If you follow me on social media, you might have seen my recent post where I shared one of my absolute favorite stress relief techniques: the 4-7-8 breathing technique. This simple yet powerful practice, developed by Dr. Andrew Weil, has been a lifesaver for me in moments of stress. While I’m not usually one to advocate for over-regulating breath, this technique stood out for its immediate calming effect, and I’ve been using it ever since I was introduced to it.

For those of you who haven’t tried it yet, the 4-7-8 technique is super accessible. Here’s a quick breakdown:

1. Exhale completely through your mouth, making a whoosh sound.

2. Inhale quietly through your nose for a count of 4.

3. Hold your breath for a count of 7.

4. Exhale completely through your mouth, with a whoosh sound and rounded lips, for a count of 8.

Dr. Weil recommends starting with four breath cycles, then gradually increasing to eight cycles over time, practicing twice a day for the best results. You can read more about it in my recent Instagram post here.

Why Stress Relief Matters When Living with Chronic Illness

Stress has a profound impact on the body, particularly for those of us living with chronic illness. If you’ve been following my journey, you know that learning how to manage stress has been a huge part of my healing. Stress activates the body’s sympathetic nervous system, triggering the fight-or-flight response, which can increase inflammation, worsen fatigue, and make symptoms of chronic illness more severe.

That’s why I’m so excited to share this practice and many others at our upcoming Masterclass on Overcoming Chronic Illness Burnout, which I’m co-hosting with Jayci Gibbs, a Millennial Burnout Coach, on October 30th at 4 p.m. PT / 7 p.m. ET. This masterclass is designed to provide both immediate stress-relief tools and long-term strategies to help you better manage the ongoing pressure that can come with chronic conditions.

What to Expect from the Masterclass

In this 1-hour masterclass, we’re going to cover the intersection of chronic stress, burnout, and chronic illness in depth. Here’s a sneak peek of what you can expect:

• Understanding the Neuroscience of Stress: We’ll walk you through how stress affects the nervous system, especially in individuals with chronic illness. This will help you better understand the stress cycle and how it impacts your body physically, emotionally, and mentally.

• Practical Tools for Stress Management: You’ll learn a variety of accessible techniques—including the 4-7-8 breathing exercise—that can be used to reduce stress in both the short and long term. These include breathwork, meditation, and other mindfulness practices.

• Building Nervous System Resilience: Nervous system regulation is key to managing chronic stress and reducing symptom burden. We’ll show you how to strengthen your nervous system over time, making it more resilient to stressors.

• Creating Space for Healing: Whether it’s through stress management, setting boundaries, or making space for rest, we’ll explore how to prioritize yourself and create a healthier relationship with your body and mind.

• Increased Confidence: One of the outcomes of this masterclass is that you’ll walk away feeling more confident in using these stress reduction strategies. Techniques like the 4-7-8 breath can feel intimidating at first, but with hands-on guidance and practice, you’ll feel empowered to integrate them into your daily life.

Who This Masterclass is For

This masterclass is designed for:

• Anyone living with chronic illness who feels burnt out, overwhelmed, or stuck in a stress cycle.

• Individuals seeking practical tools to reduce stress and inflammation, and improve overall energy levels.

• People curious about nervous system regulation and how it can help manage chronic illness symptoms.

• Those looking for accessible, easy-to-incorporate techniques for both immediate stress relief and long-term resilience.

• Anyone wanting to create more space for healing by learning how to balance stress management with self-care and rest.

Tickets are still $25 until October 25th—grab yours now before the price goes up! The link is here and below, and I encourage you to reserve your spot ASAP before they’re all gone.

I can’t wait to see you there and share these amazing practices with you. If you’ve ever been curious about how to manage burnout and chronic illness in a holistic way, this is the perfect opportunity to learn and grow in a supportive community. Feel free to reply to this email if you have any questions!

With love,

Lauren x

TICKETS: https://www.eventbrite.com/e/overcoming-chronic-illness-burnout-masterclass-registration-1041689450187?aff=ebdssbdestsearch

Last episode as of Dec 2023

Emily Ana Levy is a distinguished social impact entrepreneur, renowned patient advocate, healthcare Key Opinion Leader, and acclaimed international public speaker. Emily's journey led her to co-found Mighty Well in 2016. It’s a startup driven by her personal experiences as a patient grappling with chronic neurological Lyme disease and autoimmune conditions, along with the challenges of managing vascular access devices. Mighty Well's direct-to-patient brand offers innovative medical products and comprehensive digital learning on vascular access, empowering patients to confidently navigate their health journey. With an unwavering commitment, Levy and her team have successfully launched seven adaptive medical products, notably the Class 1 FDA-registered PICCPerfect® Pro. Emily and Mighty Well's impact has been featured across various media outlets such as The New York Times, The Wall Street Journal, Who What Wear, The Boston Globe, PBS, Forbes, and more. In 2021, inspired by her transformative healing journey in the Amazon and stepping into her gifts as a seer, medium, and deathwalker, Emily established Hamsa Healing. In her practice, she is dedicated to facilitating clients in experiencing profound healing practices from the Amazon and the spiritual realm — practices that played a vital role in saving her life and putting her chronic illnesses into remission. Currently residing in Providence, the heart of the Ocean State of Rhode Island, Emily finds solace in cold water plunges that invigorate her senses and ground her in the present moment. She cherishes moments at home with her two adopted poodles, a warm blanket, and a cup of tea; valuing introspection over bustling networking events. Emily remains devoted to self-discovery, eager to share her insights with folks who, like her, have felt marginalized within a business and medical system that often overlooks their needs for visibility, understanding, and validation. What started as an entrepreneurial journey to 'turn sickness into strength' has now become one of learning strength from sickness.

Key Links

Mighty Well

Dr. Casey Kelley on UP - Ep 118

Takeaway

Tune in as Emily shares:

* that she’d blocked out a memory of being bitten by a tick at the age of six; she was bitten again at the age of 12, alongside having confirmed EBV

* what her initial symptoms were like

* how she was overlooked because of her age and gender — and initially put on birth control to control her “hormones”

* that she finally found a Lyme-literate NP in her home state when in college — and received the diagnosis of Lyme and tick-borne illnesses at the age of 19

* her additional diagnoses: POTS/dysautonomia, Hashimoto’s disease, CIDP (chronic inflammatory demyelinating neuropathy), C-PTSD, and Gilbert’s syndrome

* that she went to see Dr. Casey Kelley after hearing her episode of the show!

* how her lived experience informs the creation of adaptive devices and wearables for Mighty Well

* how she was able to embody her identity as a disabled person — coming from a family of athletes

* that she had a lot of Lyme support in college, but also felt “othered” in the sense that she had to advocate for her health for the first time

* what a typical day was like for her before remission

* her rumination on the invisibility of her diagnoses — and their few visible signifiers, which included her PICC line and chest port, as well as her occasional use of a cane

* how exhausting it can be to tell people your life story when you live with invisible illness and have to provide validation to others

* the epidemic affecting women in healthcare: acute infections, especially those presenting with multiple and varied symptoms — and how important it is to listen to and include women, both in treatment and in research

* how her family background in textiles informed the Mighty Well product line

* her advice for fellow spoonies and entrepreneurs

* why living near the water is so important for her

* that she has trained her dog, Olive, as a medical alert service animal

* her belief that ketamine therapy saved her life, with regard to the diagnosis of C-PTSD

* her endorsement of plant medicines and herbs, and why she has moved in that direction where her ongoing treatment is concerned

Hanah Salas is the magic mama of three littles; an energy worker and maker, she is the founder of the first and only CBD wellness company that offers sliding scale pricing on its goods: Open Apothecary/Magic Mama Co.! She started consciously making herbal remedies when she was pregnant with her first child, out of the need to use healthy, natural, safe products for her whole family. Then her mom was diagnosed with Lyme disease and fibromyalgia, while at the same time, one of her twin daughters was born with a heart defect. Her intentions and need to create stronger, more magical remedies was born. She started infusing her products with more love; Reiki, prayers, and high vibrations to aid in healing. Her goal now is to make these products more accessible and affordable. The more she sells on her platform, the more she is able to donate products and services to those in need who cannot afford it.

Key links mentioned in this episode:

Open Apothecary/Magic Mama Co.

Buenqamino/Christina Kantzavelos on UP (Episode 119)

Brujitxs del Barrio Collective

@magicmamaco on Instagram

@openapothecary on Instagram

Lauren’s favorite products:

CBD Salve 150mg

CBD 50mg Pain Bath Bomb

Tune in as Hanah shares:

* how and why she first started creating natural products

* that her mom likely contracted Lyme disease as a child, and was diagnosed with late-stage Lyme when Hanah herself was an adult

* that the one natural remedy that gave her mom any relief from the chronic pain she experienced was cannabis

* how complex it was for her mother to get her Lyme diagnosis

* that her mom had over 50 diagnoses and was on multiple prescription drugs before being diagnosed with Lyme

* how her mom struggled to receive pain medication — and later ended up with opioid addiction

* how CBD helped Hanah’s mom, and also contributed to Hanah’s product line

* how Hanah has built her business with ethics at the forefront — giving away certain plant medicines to those in need, as well as teaching Reiki and sharing her expertise for free

* how her mom’s treatments hit her family financially — and why it’s so important for her that her products be accessible

* why she believes that healing — and access to said healing — are our birthrights

* what Reiki is, and how accessible it can be as a healing modality

* why she also began to access the Akashic records, and how it helped with her daughter’s healing

* why she prioritizes BIPOC, indigenous, and LGBTQIA+ clients in her business

* why she formed a collective to support communities most impacted by historical underrepresentation and marginalization in her healing work

* the importance of addressing grief and trauma in healing work

At the age of 16, doctors diagnosed Carlos Alvarez as completely blind in his right eye; the sight in his left eye had deteriorated to 73% as a result of congenital glaucoma. When Carlos was 19 years old, he went through eye surgery — but the operation was not successful. He lost all remaining sight, leaving him with permanent sight loss. A person of deep faith, he constantly reframed this experience of loss into one of abundance, telling himself: “sometimes God removes something you never thought you'd lose, to provide you with something you never thought you'd have.” Before losing his sight, Carlos had responded to school bullying by learning Brazilian Jiu Jitsu (known as BJJ by those who practice the sport), a martial art with similarities to Judo. Despite the onset of his disability, and at the encouragement of his cousin, he continued to learn BJJ…and now competes (frequently winning!) as a black belt. He also became passionate about teaching others living with sight loss, helping them improve their quality of life and confidence in their abilities. He now provides BJJ lessons to the blind community through Gama Filho Martial Arts in Miami, Florida, and reminds us that he knows first-hand what it's like to live with a feeling of defenselessness after losing one’s sight; with a fear of falling, getting lost, or the vulnerability of potentially being robbed, struggling to find employment, or being abandoned. In his own way, Carlos has given back to his community through his teaching of the Blind Warriors, and inspires others to take their destinies into their own hands, no matter what level of ability they start from.

Key Links

Key links mentioned in this episode:

Carlos Alvarez

Gama Filho Martial Arts

Takeaway

Tune in as Carlos shares:

* that despite vision problems growing up, he didn’t know he had glaucoma until he was 16 years old

* the day he completely lost vision in his right eye — and how this led to the discovery that he had been born with congenital glaucoma

* his emotional reaction to his diagnosis

* that despite his deep faith, he questioned it when he was first diagnosed

* how martial arts helped him to regain his happiness and confidence

* why Brazilian Jiu Jitsu (BJJ) is particularly adaptable to sight loss: there is no striking in the art, but it’s more of a grappling experience — and, as Carlos tells us, “your hands become your eyes”

* that disability care in his home country of Ecuador is not widely distributed

* the stigma and misconceptions about blindness that he strives to shift in his work

* the importance of independence to him, as a person living with sight loss

* how he is leveraging his skill in BJJ to help others with visual impairment to face their fears

* how his work has taught him to break through his own limited mindset

* that he has a wonderful guide dog to aid him in his independence

* instances of prejudice that he’s encountered when out with his service dog

* his hope for the future of inclusion in his sport

Overview

Michael was born to a hyper-abusive, drug-addicted mother who cut his finger off at four years old…lived with what he calls “a step-father you pray you never have,” and was frequently houseless and living in poverty. A member of the Mormon Church, he was also molested by a fellow parishioner. At the age of 13, he ended up in the custody of a racist grandmother who pushed him into an identity crisis — and quickly turned to drugs and alcohol to survive continuing abuse. “Between the guns, drugs, crime, and poverty…I was facing life as just another statistic,” he shares. Despite being diagnosed with multiple learning disabilities and not graduating high school on time, he found success in corporate America in his early 20s. But the success only made things worse: Michael found himself “morbidly obese,” high and drunk daily, experiencing debilitating panic attacks, rage, and even attempting suicide. And then, he had his Mirror Moment: he found his inner power and chose to do whatever it took to work through his childhood trauma. He says that this is when his life really began. Michael is now the author of the best-selling book Think Unbroken and is a coach, mentor, and educator for adult survivors of child abuse. He spends his time helping other survivors get out of "The Vortex" to become the hero of their own story and take their lives back. Michael hosts the Think Unbroken podcast, teaches at Think Unbroken Academy, and is on a mission to create positive change in the world.

Key Links

Key links mentioned in this episode:

Think Unbroken

Michael’s book

Michael’s podcast

Takeaway

Tune in as Michael shares:

* that he first got high at 12 years old

* that at 15, he was kicked out of school and put into a “last chance” education program

* that his family and friends — and he himself — had been to prison and arrested

* his rock bottom moment: putting a gun in his mouth — and not pulling the trigger

* how his Mirror Moment took shape: that he realized he was living the stories that others had told him about himself, and moved out of his breakdown

* why he got serious about therapy and healing his trauma — both personal and generational

* how he got into self-development and writing

* that as he sees it, there are two kinds of people: those who are kind to themselves, and those who aren’t

* how to shift the pendulum from thought and action into self-actualization

* that the idea of healing all starts with action — and making the choice to lead a more fruitful life

* why he doesn’t believe that compassion and forgiveness are mutually exclusive — and why he believes forgiveness needs to be earned

* why it’s important for him to lead with what he can actually control in his life each day

* what “self-care” looks like for him

* that he lives with an autoimmune condition (postural orthostatic tachycardia syndrome, or POTS), and has to be mindful of it as he moves through the day

* that he has also experienced SIBO (small intestinal bacterial overgrowth), which at one stage contributed to intense brain fog

* how physical and mental health are intertwined, and how he counteracts inflammation and stress in his body to be his best

* how he’s found freedom in releasing himself from what others think of him

* what authenticity means to him

* that you are not responsible for the things that happened to you — but you have to acknowledge that they happened

* the importance of community, connection, and commitment

Uninvisible Pod is a listener-supported publication. To receive new posts and support my work, consider becoming a paid subscriber.

Gigi Robinson: if you don’t already know her, then welcome to the party! From making history as a finalist in the Sports Illustrated Swim Search, to her advocacy in the chronic illness and body positivity spheres, all the way to NFT research and navigating life as a small business owner — she truly does it all. With features in Bustle, Business Insider, Forbes, and Vogue Business, Gigi combines beauty and brains as GenZ’s forefront thought leader in the content creation space. Having been diagnosed with Ehlers Danlos Syndrome (EDS) at the age of 11 (and more recently diagnosed with endometriosis), Gigi knows how hard it is to be different. However, her lively spirit, positive demeanor, and elevated work ethic have made her and her Spotify Live Podcast “Everything You Need Is Within” an instant hit. Listeners of her podcast have the opportunity to learn how to become their own advocates, challenge the status quo, and dominate in professional settings. When she is not working on her podcast or posing for national campaigns, Gigi can be found working on her newsletter, “The Creator Chronicles.” Her latest project is aimed at documenting life as a young woman with a chronic illness and unlocking behind-the-scenes tips and tricks for rising content creators. With so much more on the horizon including an upcoming speaking tour, creative production for brands, advising brands and a recently-released book, A Kid’s Book About Chronic Illness, Gigi is just getting started.

Key Links

Key links mentioned in this episode:

Gigi on Insta

Gigi’s podcast

Gigi’s website

Gigi’s book

Gigi in SI Swim

WEGO Health

Calm App

Oura Ring

Takeaway

Tune in as Gigi shares:

* how she was originally diagnosed with EDS, and how it’s shaped her life

* the role that therapy has played in her healing

* how and why she developed disordered eating behaviors

* how her EDS diagnosis dashed her hopes of pursuing a career as a competitive swimmer

* a discussion about the fear that comes up for her around exercise: both because she fears hurting herself (either in the exercise itself, or during recovery), but also because of her history of body dysmorphia

* how body image ties into the diagnosis of a chronic condition — and how it inspired her to get into the public discussion of body positivity

* some of the holistic practices that have soothed her nervous system and helped her reduce stress

* what it means to be an influencer with chronic illness — and what it might mean if remission occurs

* why it takes time to learn how to communicate with your loved ones about what you need for living well with a chronic condition

* how living with a chronic condition directly impacts mental health

* what it’s been like for her to navigate the pressures of being a full-time Master’s student with the realities of living with a chronic condition — and what the accommodations process was like

* what her career path has looked like as a result of her physical needs

* why she loves water aerobics

* what practices she invests in daily for her physical and mental health

* a gut check on evolution and acceptance

* why it’s important to track your symptoms

Transcript

Transcript coming soon!

Jared Walker founded Dollar For in 2012 in Portland, Oregon. Now a national non-profit crushing medical bills and making charity care known, easy, and fair, the organization was born out of a desire to help folks in medical crisis after Jared witnessed his own family's experience with — you guessed it — crushing medical debt. Dollar For eliminates said medical debt by empowering patients and advocating on their behalf, because, as they believe: a medical crisis should not lead to a financial crisis. The organization helps patients check if they are eligible for financial assistance at their hospital, prepares and submits applications, and eliminates those medical bills — for free, no strings attached. Jared is on a mission to pulverize as many medical bills as he can while educating patients and empowering patient advocates.

Key Links

Key links mentioned in this episode:

Dollar For

Instagram

TikTok

Twitter

Takeaway

Tune in as Jared shares:

* why he founded Dollar For in 2012, after his own family underwent crushing medical debt

* why he thinks it’s truly ridiculous that medical crises in America usually also bring financial crises along with them — and how this doesn’t serve patients at all

* how he learned about charity care programs (enforceable as a result of the adoption of the Affordable Care Act, or ACA)

* what charity care is — and why enforcing this program can save patients MILLIONS

* how medical debt can negatively impact our credit and force many into bankruptcy

* why he took to social media to spread the message about charity care

* why he thinks charity care flew under the radar for so long — and why it continues to do so

* why federal minimum income thresholds are different from state-to-state, and how this can affect access to charity care

* what the federal threshold limit is on the use of charity care (how much time patients have to utilize this bill payment option — 240 days!)

* what accountability looks like between state and federal agencies and hospitals — and how Dollar For often stands in as an intermediary

* that putting hospitals on blast on social media has often been a more effective tool to enforce charity care than letters from legal sources

* why social media patient activism makes Jared hopeful for the future

* his estimate that 30% of Americans would qualify for charity care based on income alone

* where Dollar For’s bill forgiveness tally was at in April of 2022: $16 million (as of this episode release, they’ve surpassed $28 million!)

* how he works to match his volunteers’ strengths with patient needs

* the demographics of the patients Dollar For works with: largely the elderly, and individuals who speak English as a second language

* how so many hospitals game the system to hide charity care from patients in need

* Jared’s take on medical PTSD — and how medical debt contributes to the experience

* how Jared sees the future of healthcare costs in America — and that the solution is to empower patients

* practical tips for asking hospitals to consider your bill for forgiveness under charity care: write a letter!

* Jared’s advice on NOT becoming complacent about large medical bills as they arrive

* why NOT to put your hospital bill on a credit card

* that if you’ve paid bills on a payment plan and later find out your bill was eligible for charity care — you are eligible for a FULL REFUND

* how Dollar For was first invited to the White House by Vice President Kamala Harris (they continue to be invited to this day, and are working with stakeholders to enforce and create awareness of charity care programs on a broader level)

Sponsors

This episode is sponsored by Gena Chieco Coaching. Get 10% off Executive & Life Coaching using code INVISIBLE! With a background in psychology and law, Gena inspires clients to step into their best lives by helping them access their inner strengths, clear the cobwebs holding them back, and cultivate a dream-big, growth mindset.

Transcript

Coming soon!

Tune in as Dr. Wentz shares:

- how she became interested in thyroid health

- what symptoms she experienced when she was diagnosed with Hashimoto’s

- how she applied her pharmacological knowledge to reverse her own Hashimoto’s

- how lifestyle changes (especially nutrition shifts) supported her healing

- how the concept of adrenal dysfunction became a new focus for her — and allowed her to reverse sleep and anxiety issues

- that if you have a thyroid issue, you’re likely also experiencing adrenal dysfunction

- what adrenal dysfunction means: that your body is stuck in a chronic stress response

- what a cortisol rollercoaster feels like

- how ME/CFS and fibromyalgia patients can also experience adrenal dysfunction

- why the adrenal response to stress makes sense biologically — even if it doesn’t feel like it’s serving us

- where the term “adrenal dysfunction” came from — and why it’s an oh so real biological response, despite the naysayers

- why so many people who identify as female live with adrenal dysfunction

- why it’s so important to balance our blood sugars and eat more protein in order to begin to treat adrenal dysfunction

- the success rates of her Adrenal Transformation Protocol, and how it works

- suggestions for supplementation (which should always be reviewed with your MD!)

Key links mentioned in this episode:

The Thyroid Pharmacist

Books

Key links mentioned in this episode:

Open Medicine Foundation

OMF on Facebook

OMF on Twitter

OMF on Instagram

Tune in as Chris shares...

- how he got involved in ME/CFS research

- his main area of expertise: metabolomics

- that ME/CFS outbreaks can be traced back as far as the mid-19thC, with symptoms  commonly related to significant concerns with fatigue, sleep, pain, brain fog, and a 50% loss of general function

- a description of PEM – post-exertional malaise – which is the main component of ME/CFS

- that there are up to 50 symptoms associated with ME/CFS, but the main five are: PEM, fatigue, unrefreshing sleep, cognitive impairment, and pain

- that ME/CFS is highly comorbid with fibromyalgia and other invisible illnesses

- that ME/CFS was originally described as a flu- or polio-like illness; and was first properly explained by the Ramsay definition and given the moniker of “Myalgic Encephalomyelitis”

- that patients need to have ME/CFS for 6+ months in order to receive a diagnosis

- one of the major schools of thought with regard to ME/CFS: that it stems from a dysfunction of stress response in the body; it’s possible, however, that bacteria and other pathogens may also play a role in onset

- that 1 in 200-300 people has ME/CFS

- that ME/CFS is NOT categorized as a rare disease; but it’s treated by the medical community as such – creating stigma through lack of research and understanding

- that ME/CFS has been commonly misdiagnosed as a form of hysteria – both in the past and in the present

- that very few clinicians dig in deep enough with their patients in order to give them an ME/CFS diagnosis – but that burden is not just on doctors, as diagnostics and treatment guidelines need to be standardized in order to support their work

- that the Open Medicine Foundation was built to provide effective treatments for ME/CFS patients

- that meeting patients has inspired him in his work, even from the very beginning

- the desperate need for funding for continued research into ME/CFS

- the politics of funding medical research

- that ME/CFS is often considered to be more a psychological than a physiological illness

- that the National Institutes of Health (NIH) has been more receptive than some Aussie governing bodies when it comes to research into ME/CFS

- the biggest bright spot in ME/CFS: the momentum of funding for research

- OMF’s collaborative research initiatives with Harvard, Stanford, and others

- that ME/CFS could be a collection of several diseases, and not one disease in and of itself

- the importance of specifics in diagnostics

- why medicine needs to be patient-centered

- the importance of pacing in order to avoid a crash related to PEM

Tune in as Andrew shares:

• how they were diagnosed with cerebral palsy (CP) at the age of one and a half
• their more recent diagnosis of IBS, and how it has presented its own challenges
• how COVID has affected their sex life, and why they hire sex workers
• where they can see room for disability discourse to grow
• how they emotionally process ableism from day-to-day
• the nuances of caregiving, and how bad management can lead to dehumanizing experiences for patients
• how care management can be improved from the top-down
• how they have cultivated their mindset — and how their #1 advocate, their mom, was key in encouraging them to develop a thick skin and a sense of humor
• a nuanced conversation about accessibility — and why it’s more difficult for disabled creators to create accessible content, even if we’d like to
• how we can work to get out of the public health crisis of bias in healthcare: by hiring those of us who are historically excluded to positions of power, to reshape the system from the top-down
• why and how they were inspired to create Bump’n — the world’s first disability-driven sex toy

Tune in as Dailyn shares:

• when she first experienced mania and psychosis — but that she lived without diagnosis for at least a decade
• how she was haunted by stigma and shame from the early days of her diagnosis
• how her diagnosis affected her relationship to her creative outlet: poetry
• the role her cultural background played in her relationship to her diagnosis and care
• why she came out of her “bipolar closet”
• how she interviews potential practitioners, and her tips for others looking for a new therapist
• why her diagnosis doesn’t define her
• how she became a mental health advocate
• what a “warm line” is, and how helpful it can be (see the links in show notes for some directories!)
• why asking for help is a sign of strength

Tune in as Phoebe shares:

• how she was first diagnosed with Hashimoto’s thyroiditis
• how her health has impacted her relationship with food
• how much work it takes to be well, especially when one is impacted by chronic illness
• what SIBO is, and how she was diagnosed
• how the symptoms of SIBO can manifest in the body
• about the state of SIBO research and clinical practice
• what it was like to humble herself with her own advice after writing The Wellness Project
• how big a role stress can play as a root cause in chronic illness
• about the close correlation between IBS, SIBO, and autoimmune disease
• what a low-FODMAP diet is all about
• how she accesses and optimizes her own wellness
• what she thinks the next frontier of gut health will be

Tune in as Nikita shares:

• that she first noticed debilitating pain on her honeymoon, but noticed irregularities in her cycle from its appearance at the age of 15
• the learning curve of “not knowing what you don’t know”
• that she’s been additionally diagnosed with PCOS (polycystic ovarian syndrome), adenomyosis, IC (interstitial cystitis), and vestibulitis (which she now has as a result of medical trauma caused by a healthcare provider)
• why she decided to take a year off all medications
• that she has never been offered mental health support for her conditions
• how she discovered she was a highly sensitive person (HSP)
• why she only sees female doctors
• how seeing a urogynecologist was a life-changing experience for her
• why self-advocacy is so vitally important
• why finding a way to cope with her pain has always been her first priority — and yes, even before the question of her fertility
• that the depth of her chronic pain and surgical intervention forced her to face her mortality
• how essential oils and EFT (Emotional Freedom Technique) have helped her manage her pain and anxiety
• why her hysterectomy triggered depression and anxiety
• how sharing about her chronic illnesses helped her find healing
• why she chooses to be intentional with her energy
• that in order to embrace your future, you have to face your past

Tune in as Kendall shares:

• how she was gaslighted from an early age to believe her period pain was normal
• that she became aware her son was on the autism spectrum when he was 18 months old
• that she also lives with anxiety, depression, and PTSD following adverse childhood experiences
• that she was diagnosed with endometriosis at 22, and told by her doctors that she was so far advanced in her disease that she needed to consider starting a family immediately if she ever wanted to have one
• that the pain of her diagnosis forced her to finish college online
• that after her second child, she was offered a hysterectomy for her pain — and that by the age of 26, she was undergoing menopause
• that to this day, she has had eight surgeries for her pain — and it is still debilitating
• why she regrets her hysterectomy
• that she was never offered therapy as she navigated both her diagnosis and her son’s — and why it plays such an important role in her life now
• how medical research has failed her as a woman living with stage IV endometriosis
• how she manages her pain now
• what her son has taught her about resilience
• her advice for others living with chronic pain and/or advocating for others

Tune in as Dr. Cadet shares:

• how her early symptoms first manifested
• the truth about accurate diagnosis: “in order to be diagnosed, you have to be misdiagnosed”
• how she was diagnosed with coronary artery spasms, or Prinzmetal’s angina; as well as inappropriate sinus tachycardia, pre-atrial contractions (irregular heartbeat), and orthostatic hypertension
• how she faced her own mortality during the process of being diagnosed
• what her long-term care looks like with regard to heart health: ER visits and the risk of heart attack
• the criteria she holds her care providers to
• why she is still waiting for genetic testing to determine her hEDS type
• how she manages her symptoms day-to-day — and how so much of that management involves clear communication
• what true energy management looks like for her
• why the “ER is nothing but trauma for [her]” — and why healthcare in America is such a mess
• a conversation about the concepts of intersectionality and inspiration in chronic illness and disability identities
• her advice for Spoonies and their loved ones

Tune in as Faith shares:

• how she has confronted trauma-informed services in healthcare, and how her early experience shaped her interest in medicine
• the importance of prioritizing mental health care
• about her historic role in having racism declared a public health crisis by the AMA
• how hard she and her team worked to have this policy passed by the AMA
• her hope that more BIPOC train as physicians in the future — and that these recent policy declarations can help pave the way
• how to get involved in activism locally, to support ongoing work in racial justice and healing
• the role of Black men in healthcare reform in America
• where her advocacy work is headed next: to addressing natural hair and cultural headwear discrimination 

Tune in as Pooja shares:

• that she was diagnosed with OCD at the age of 13, but recognized symptoms earlier than that
• that her symptoms manifested with obsessive thoughts, compulsions, depression, and anxiety
• that OCD is an anxiety disorder, and the compulsions are usually designed to give someone a sense of control when they don’t feel they have it
• how her background influenced her approach to mental health care — because mental health and illness can be a taboo topic in South Asian cultures
• one of the biggest challenges of her diagnosis: finding an appropriate therapist
• how her diagnosis affected her relationships, especially as a teen
• why dealing with mental illness is such a lonely experience, especially early on
• why support and community is as vital as finding the right care providers
• what ERP (Exposure and Response Prevention) is, and how it has helped her mitigate the negative aspects of her disorder
• how stress can influence her symptoms
• how OCD affected her in the workplace early in her career, and how it influences her treatment of employees now
• what we most desperately need to change about American healthcare in order to best serve patients in need
• her thoughts on using medication to manage her illness
• her advice for others living with chronic and/or mental illness
• why we need to destigmatize conversations about mental health and illness

Tune in as Nthabeleng shares:

• when she first started experiencing symptoms of EDS, and how she was diagnosed
• how she struggled with doctors who didn’t understand her diagnosis and treatment
• how her constellation of symptoms finally made sense when she discovered EDS in her research
• her experience in a psychiatric hospital, which further proved her diagnosis was not in her head
• the degree to which her organs are involved in her EDS type
• how her diagnosis has impacted her relationships
• how and why she founded RDLA
• how disability has transformed her presence in the world
• how you can support RDLA’s efforts
• her advice for others living with invisible disability

Tune in as Brandon & Matt share:

• when and how they were both diagnosed with T1D
• that when they were diagnosed, there was not support for teenage males with T1D
• how technology advancements in diabetes care has changed their lives
• how they were inspired to start giving back to their community
• why chronic illness diagnoses can be so taxing — beyond the physical
• the impact of Matt’s diabetic alert dog, Forest, on his life
• how their diagnoses have impacted their relationships
• what inspires them every day
• why mental health support is so vital to survival with a chronic illness
• when and why Matt began to address substance use
• a discussion of ADA compliance in addressing individuals who work with service animals (and the animals themselves)
• a discussion of access issues with regard to medical care and equipment for diabetes management
• why money matters in the healthcare system
• their advice for living well with T1D

Tune in as Morgan shares:

• how her symptoms started, and how she was initially diagnosed
• the importance of working with a specialist for your condition
• what her MG treatment looked like — and how a thymectomy brought her MG into remission
• what MG is: a neuro-autoimmune condition
• why seeking support and community is vital as a Spoonie
• how her diagnosis helped her strengthen her self-love practices
• how MG has changed her approach to exercise
• how MG has shaped the way she sees her life now
• how reducing toxins in her daily life has improved her health
• why holistic wellness has become a major interest for her
• her top tips for thriving with chronic illness

Tune in as Karin shares:

• that she was always in good health — but that at the age of 16, this changed
• that shortly after, she was diagnosed with type 1 diabetes
• the fear that came along with her diagnosis
• what she wishes she’d done differently after her diagnosis
• that she spent the first decade after diagnosis largely hiding it from the world, even though it played a role in shaping her career
• that when her dad donated a kidney to her 12 years ago, doctors also suggested she get a pancreas transplant simultaneously
• what qualifies diabetes patients for pancreas transplants
• how she recognized that patients can be innovators — and how this inspired her to launch Lyfebulb
• how she also realized that patients need patients — and how this plays into Lyfebulb’s community today
• how she manages the side effects of her immunosuppressants
• the importance of educating care partners in the nuances of chronic disease — and how vital it is that patients learn to ask for what they need
• the obstacles presented by the American healthcare system
• what it was like to entertain motherhood as a patient on immune-suppressing drugs

Tune in as Jemma-Tiffany shares:

• that she was born with cataracts, and is low vision/legally blind
• that she didn’t start experiencing issues with sound until she was about six years old
• that she was initially diagnosed with chronic migraine, but was eventually diagnosed with hyperacusis
• that hyperacusis was originally thought to be a psychosomatic condition — and as such, she has had to endure a lot of painful treatments
• how diagnostics have changed in recent years, as it regards hyperacusis
• that there is currently no complete treatment for hyperacusis
• what hyperacusis is, and how it can affect patients differently
• that the cause of hyperacusis is unknown, even in Jemma-Tiffany’s case
• how she has grown into a patient advocate
• how COVID has positively impacted her educational experience, enabling her to receive more supportive accommodations
• why she was driven to attempt suicide
• how she has been gaslighted over and over — in medical settings and beyond
• how some alternative therapies have helped her (though they have not cured her of her pain): TENS and PEMF, among others
• that she has been doing her own medical research since she was 11 years old, in order to present information to her doctors
• what she’s working on right now
• her advice for other young people living with chronic pain

Twenty years after 9/11, some first responders are still struggling with long-term health complications brought on by the historic event. For Tom Frey, a former NYC detective, the consequences started with a diagnosis of Hodgkin’s lymphoma — the treatment for which then caused pulmonary fibrosis (PF) — a life-threatening, incurable lung disease. His illness can be linked back to inhaled dust from his rescue and recovery efforts at Ground Zero. Tom’s not alone. Officials worry that deaths of 9/11 first responders due to illnesses caused by exposures at Ground Zero will soon outnumber deaths of those who lost their lives that day. Despite Tom’s terminal health struggles, he works hard to drive awareness, research, and funds for a cure for pulmonary fibrosis – especially during Pulmonary Fibrosis Awareness Month, which happens to be in September. A true hero, Tom will tell you he would do it all over again tomorrow, even as he struggles daily to breathe and relies on oxygen.

Tune in as Tom shares:

• how he was first diagnosed with Hodgkin’s lymphoma in 2016 — as a result of inhaling toxic dust during and in the aftermath of 9/11
• how one of his chemo drugs caused his pulmonary fibrosis diagnosis
• that the only cure for PF is a lung transplant — and his has been on hold because of COVID
• how the Pulmonary Fibrosis Foundation has changed his life
• the trauma of working in rescue and recovery after a disaster like 9/11, and the importance of talking about it
• how waiting to die — and not dying — forced him to live again…and why he hasn’t stopped moving since
• who his heroes are: nurses and doctors
• that while the average life expectancy for pulmonary fibrosis diagnosis is 2-5 years, with the right support it can be extended
• the difficulties he’s had dealing with the United Healthcare World Trade Center Fund to cover his life-saving treatments
• his plea that we take sensible precautions against COVID — like wearing masks
• a look back at what it was like on the ground on 9/11, and in the days following the attacks
• a reminder of all the individuals who were on the ground on 9/11, and whose lives and health have been impacted as a direct result

Tune in as Sara shares:

• details of the hit-and-run that eventually triggered her diagnosis
• what the diagnosis and acceptance processes were like for her, as a teenager
• how chronic pain has changed her life
• how fibromyalgia manifests in the body
• how discovering accessibility services supported her in college
• that taking holistic approaches to her symptom management has been very supportive for her
• where she has encountered “toxic positivity” in the reactions of family and friends
• how her diagnosis has impacted her relationships
• how she has worked on her mindset to cultivate balance in her life
• her experiences of acceptance and bias within the medical system, as a Muslim woman of South Asian heritage
• why she uses CBD to manage symptoms from insomnia and anxiety to chronic pain
• how the immigrant experience — from a language perspective — impacts healthcare access
• how the Canadian healthcare system needs improvement in order to better serve patients
• a reflection on her early experience of chronic illness, and how it inspires her current work
• the importance of community in ongoing healing and acceptance

Tune in as Jenny shares:

• how her chronic illness journey began in childhood, with gastroschisis and bowel surgeries
• that from the ages of two to 16 she was largely well, but that at 16 flares surfaced again through chronic bleeding in her intestines — which also caused iron deficiency anemia
• that she was eventually diagnosed with ME/CFS, but had to deal with a lot of pushback from the medical establishment
• how she got an ME/CFS diagnosis
• the symptoms that impact her most acutely — pain and fatigue
• a discussion of the social complexities of living with disability — from gratitude and “cures” to comfort zones, accommodations, accessibility, pride, and “passing”
• why she owes her life to the NHS
• how and why she started This Thing They Call Recovery
• what disabled identity means to her
• what the community she’s cultivated means to her
• why there doesn’t always have to be a lesson or a silver lining in the disability experience — sometimes it just is what it is

Tune in as Cass shares:

• how she was gaslit at the early onset of her illness
• that she was 22 when she first got sick
• that her diagnosis has brought her to the brink of her own mortality
• how her battles with health insurance have caused emotional distress over ongoing debt
• how her diagnosis brought her closer with her mom
• how her diagnosis has affected her mental health
• how the COVID pandemic has played into systemic ableism
• how her diagnosis has affected her plans for the future
• the irony that accommodations have readily been made available in the workplace because of the pandemic, but that the disabled community has been requesting them for decades
• access issues in healthcare, from financial obligation to racism

Tune in as Faith shares:

• that she underwent radioactive iodine treatment for Graves’ disease
• that she has also healed her gut from Candida and SIBO, and her immune system from EBV — all through holistic methods
• how she developed Adderall addiction, and kicked the habit
• why her Graves’ disease was so difficult to diagnose
• how she’s detoxed her day-to-day and reorganized her life with her wellness as a priority
• why the root-cause approach to healing is so important to her — and why it can be financially inaccessible to many
• some suggestions to switch-and-ditch and reduce daily toxin exposures in your home and life

Tune in as Damian shares:

• that his wife was the first to note a dip in his energy — which led to his MS diagnosis, about three months later
• why his diagnosis was both a validation and a relief
• why he’s open to multiple approaches to his health
• why meditation has been a useful tool for him — and how he learned to meditate with a friend when he first moved to LA
• how his identity forces him to navigate prejudice, and potentially triggering situations
• how sharing his MS journey launched his YouTube channel into visibility
• his lessons for others living through similar experiences

Tune in as Dani shares:

• that she also lives with bipolar II and undiagnosed EDS (Ehlers-Danlos Syndrome)
• why “annoying” is a trigger word for her
• that she was initially diagnosed with depression; then subsequently dysthymia (persistent depressive disorder), anxiety, and panic disorders
• how her ADHD presented very differently from the way it did among boys her age, which made her fall under the radar of diagnosis until she was in college
• how ADHD affects her daily executive functions and impulsivity
• how her behavior doesn’t always align with her expectations, and leads to a cycle of guilt and shame
• how avoidance plays into ADHD symptom manifestation, and can become debilitating
• how ADHD and OCD can occur concurrently
• how her ADHD impacts continuity of care within the medical system
• “ADHD tax” — when those living with ADHD end up paying more than others because the system is stacked against their success
• why forming new habits is tremendously difficult for those living with ADHD
• how her art allows her to communicate her experience with purpose
• how her work has changed lives — and why that gives her ongoing purpose
• why social media has been such a rich resource for her
• her advice for living with ADHD and neurodiversity

Tune in as Tiffany shares:

• her “disability origin story”, which left her permanently disabled — and also took her father’s life
• that she was most recently diagnosed with PTSD related to the accident that caused her disability
• her take on “toxic positivity”, and how it manifested in her life akin to internalized ableism
• how her identity as the daughter of Asian immigrants has shaped her experience: “the nail that sticks out is the first to get hammered down”
• visibility and invisibility in the disability experience
• what disability inclusion really look like
• why TikTok has been such an important space for her to occupy in anti-ablest allyship
• what an ableist micro-aggression is — how to spot them and feedback mindfully
• how she taught herself to own her disability — and how this realization was the foundation of Diversability
• four tips for being an ally to the disabled community

Tune in as Mimi shares:

• that of all her symptoms, chronic pain is most in control of her day-to-day
• that she was diagnosed with viral meningitis, and subsequently with Epstein-Barr Virus (EBV, or mono) and gastroenteritis — multiple times — and never fully recovered
• a discussion of access issues in healthcare, including the NHS and optional paid enhancements
• why doctors have a responsibility of care — both emotional and physical
• how mental health and medical PTSD have played a role in her health experience
• how she first received notice for her art — from fellow Spoonie, Lena Dunham!
• how her illnesses changed her relationship with her mum
• why she recommends those who identify as female bring a cis man with them as an advocate in doctors’ appointments
• her experiences of not being believed by medical practitioners
• who has inspired her in the disability community
• how she’s cultivated pride in her health status
• how research can give you perspective on your experience — and the experiences of others

Tune in as Estela & Juana share:

• what Juana’s early symptoms of lupus were — and that she was initially diagnosed with rheumatoid arthritis (RA)
• that Juana had to argue with a doctor (who wanted to write her off as anxious) in order to get her diagnosis and be heard — and that by the time she was diagnosed, her life was in peril
• that if Juana had not advocated for herself, she wouldn’t be here today
• how Estela was diagnosed with fibromyalgia, along with her daughter
• why Estela pursues holistic treatment to manage her pain
• the distinct role of “invisibility” in their illness experiences
• their experiences of bias in the healthcare system
• why they created Looms for Lupus, and the importance of providing patient resources in Spanish
• their tips for managing chronic illness with grace

Tune in as Alexa shares:

• how she was diagnosed with hypermobility syndrome in childhood and, later, Ehlers-Danlos and POTS (postural orthostatic tachycardia syndrome)
• how she has learned to step up into the advocacy space
• how she manages her health day-to-day
• why it’s so vital our various practitioners find ways to communicate to one another about our cases
• how access directly impacts healthcare outcomes and patient experiences
• what inspired her to start Cards for Warriors at the age of 18, and how it laid the groundwork for what would become Fight Like A Warrior
• why it’s so important to listen to our bodies, especially as Spoonies
• the importance of self-advocacy
• what the future holds for FLAW

Tune in as Julian shares:

• that he started experiencing symptoms from the age of 5, from digestive distress to dislocations — and was initially diagnosed with Celiac
• that he largely uses his wheelchair these days, in order to support his mobility
• that he was recently diagnosed with Hashimoto’s disease, but has been monitoring his thyroid health from an early age
• that as far as he knows, most of his diagnoses are likely connected to EDS
• the most significant impact on his health in his adult life: his neurological conditions, including a demyelinating neuropathy similar to MS that can flare without warning
• the emotional toll of his health conditions — from awareness of mortality to a young age, to the validation of diagnosis
• that growing up female meant that he was gaslighted over his health frequently
• how he stepped into self-advocacy
• that he started his Instagram feed as a way to manage his emotional journey through disability
• that his treatments include infusions, a feeding tube, multiple medications, physical therapy, and more
• the supportive role his service dog, Atlas, has played in his life — both physically and emotionally
• how his gender identity has influenced his experiences within the medical system — including threats to his safety from professional caregivers
• his thoughts on healthcare reform

Tune in as Shayla shares:

• that she suffered from numerous injuries during physical activity in childhood, and her hypermobility was also present at this early stage of development
• that early on, her orthopedist suspected she had EDS — but was unable to provide the genetic testing to confirm it
• that she was finally diagnosed with hypermobile EDS a decade later
• that between the ages of 13-18, she had multiple surgeries — and didn’t get her official diagnosis until 2 years ago, at the age of 23
• why her diagnosis was validating
• that one rheumatologist told her, “Black people don’t get EDS” — and her response was to lose all trust in the system for a time
• the importance of mental health support — and that it was never recommended as part of her diagnosis or treatment plan…but, thankfully, by her mother
• that she’s been exploring a vegan diet in order to reduce inflammation
• that her mom has chronic migraine — and understands what it’s like to advocate and live in chronic pain
• how she has disclosed and managed her pain in work environments — and where she’s struggled to achieve easy accommodations (even when she presented solutions)
• how triggering it can be to pursue legal action in disability cases — and why so many individuals don’t do so
• why remote work during COVID has been so much more comfortable for her
• the difficulties she had receiving disability accommodation during college, and why her disability being invisible made that fight even harder
• how her race has impacted her treatment in the medical system
• the impact of community on her experience, especially as a WOC
• why change in our healthcare system is so desperately necessary

Tune in as Rhisa shares:

• her varied symptoms: a rocking sensation similar to vertigo; migraines; a pulsing sensation in the back of her skull; loss of vision; GI issues; numbness and pain in limbs and joints; seizures; and much more
• that she also has skeeter syndrome: extreme sensitivity to mosquito bites
• that she presumes she was infected by a mosquito when visiting her family in Puerto Rico
• that she has also tested positive for Dengue fever — a viral infection also carried by mosquitoes, largely in the Caribbean
• that she didn’t get her Lyme diagnosis until 2019 — after going through at least 50 doctors on the road to diagnosis
• that she was gaslit over and over by various practitioners, frequently prescribed antidepressants, and often sent for psychiatric help as a final solution
• why she believes fibromyalgia isn’t a true diagnosis
• that when she was diagnosed with chronic Lyme, her doctor prescribed two weeks of antibiotics and sent her on her way
• that she’s learned the most about Lyme from her online community
• how her illness has affected her relationships
• how her privilege has enabled her to access treatment
• how Lyme has also put her in early menopause, and affected her fertility — with PCOS
• her specific experience of racism in the Latinx community
• why diagnoses of Lyme disease are so much more rare in communities of color

Tune in as Sharon shares:

• that she dealt with digestive flares, migraines, chronic pain, and neurological symptoms in her childhood
• why being a Highly Sensitive Person (HSP) caused her to be brushed aside by practitioners
• that doctors began to treat her body in silos, prescribing treatments for each area that was causing symptoms
• that the first time she had any relief was when she received cranial-sacral therapy — a holistic method of treatment
• how she believes her infections may have affected her son
• that she was likely reinfected as an adult
• that Lyme is an ancient bacterium — e.g., Ötzi the Iceman was discovered to have Lyme bacteria in his system
• that there is some concern her son may have Lyme, and may have been infected in utero — but that ultimately she has opted not to have him tested, and instead is raising him toxin-free
• that in the early days of her diagnosis, she saw an infectious disease doctor who likened her symptoms to HIV
• that she healed numerous gut issues with a Candida protocol
• how her diagnosis was both validating and terrifying
• that she turned to both Indigenous and Buhner healing protocols to detox from Lyme
• how trauma and loneliness affect our bodies
• what drew her to health coaching
• the importance of stress reduction for our health
• her reflections on being a chronically ill parent
• that we are all living with collective trauma due to the COVID pandemic
• how she’s discovered the importance of healing with mind-body medicine

Tune in as Dr. Hunt shares:

• what drew her to her practice
• how she handles initial appointments and testing
• why she lets the patient lead their care, and offers options for testing and treatment
• the importance of family involvement in a patient’s care
• how our work-lives are hindering our health
• why a morning routine can aid us in scheduling self-care (read: meditation!)
• what the healthcare system in the US is getting right
• the importance of extended time with patients and individualized nutrition guidance in traditional allopathic approaches
• why it’s helpful to find an integrative or functional medicine practitioner if you’re struggling with chronic illness
• other pathways to improve overall health: nutrition logs and good sleep hygiene
• that her job is to empower her patients to take care of themselves
• that care is individualized — there is no “one size fits all” approach to testing and treatment

Tune in as Christina shares:

• that throughout her childhood and into her teen years, she experienced migraines, chronic pain, panic attacks, digestive problems, and numerous other unexplained symptoms
• that she lost her brother to cardiomegaly when she was 19
• that when she got checked for cardiomegaly, she was actually diagnosed with POTS
• that it took nearly 2 decades for her to receive her Lyme disease diagnosis
• after grad school, she was diagnosed with Celiac disease — and has been gluten-free ever since
• that her health continued to deteriorate to its lowest point in 2018, when she was first referred to a rheumatologist — who was also an LLMD
• that she doesn’t recall ever being bitten by a tick, but has been bitten by tons of mosquitoes…and reminds us that mosquitoes appear to be able to carry Lyme, as well
• that she was additionally diagnosed with giardia, Lyme co-infections, and had been exposed to mold
• she was also diagnosed with lupus, Sjogren’s, and mixed connective tissue disease — all of which appear to be manifestations of her chronic Lyme disease
• that treatment for Lyme knocks you off your feet — the Herxheimer reaction is truly horrific: “it gets worse before it gets better”
• that her parents had to begin caring for her before she even began treatment
• that she’s additionally been diagnosed with mast cell activation syndrome (MCAS)
• that she now considers herself to be 60-70% better, and has redesigned her lifestyle to support healing from her chronic illnesses as best she can
• that she has always been her own best advocate, in no small part because her parents are immigrants
• that she and her parents worked through trauma together and in some ways, her illness has created that space for emotional healing
• that the people who take care of us are experiencing second-hand trauma
• a discussion of accessibility to healthcare in America
• how the Begin Within Today journal was born of her own experience
• that she has seen over 50+ doctors throughout her chronic illness experience
• the importance of reducing toxins in our everyday lives, from EMFs to diet

Tune in as Dr. Kelley shares:

• that she founded Case Integrative Health 2 years ago; but has been in the integrative health field for over 8 years
• that she dealt with chronic fatigue, brain fog, and other symptoms for years until she discovered they were part of a Lyme diagnosis
• that she wanted to “create a place for people with chronic illnesses who were misunderstood by conventional medicine, and needed a different approach”
• that she is already seeing new patients living with long COVID — a “post-immune issue”, much like chronic Lyme
• that she trusts her patients to know their bodies better than she does — and so, she believes them
• why integrative practices can save the healthcare system money (in preventing chronic disease)
• that the science supporting the existence of Lyme diagnosis and treatment is REAL and readily available
• that much Lyme testing currently available is inadequate; more funds are needed for greater research and development
• how doctors are strapped by the system of private interest in healthcare
• why she has divested from the health insurance model in her practice — and wants her patients to get better, so will always find a way to work with them to make their care accessible
• that financial support is always available to patients through various Lyme advocacy groups
• that she was diagnosed with POTS during med school, but was actually living through chronic Lyme
• all the varied symptoms that can be associated with Lyme
• the importance of thorough tick checks after going outdoors
• where ticks are most likely to be found on the body
• how she treats Lyme in her practice
• that she is licensed in several states, and practices telemedicine for patients outside of the Chicaco area
• how she celebrates patients who make it through chronic Lyme treatment

Tune in as Ali shares:

• how her symptoms were written off by practitioners: as a cold, flu, stomach flu, food poisoning, ear infections, depression, and more
• that while she was being brushed aside by practitioners, her symptoms progressed so much that she became bedridden
• a recognition of her privilege in accessing varied treatments — Eastern, Western, antibiotics, ozone, IV therapy, peptide therapy, IVIG, and more
• that she has multiple confections, dysautonomia, and Specific Antibody Deficiency as a result of her Lyme infection
• that one of her doctors had the wherewithal to send her to an LLMD for confirmation and treatment
• that so many Lyme patients are abandoned by friends, family, and practitioners
• how her illness has impacted her relationships
• the importance of mental health support through chronic illness — and that she finally sought professional support after losing a close friend to Lyme
• the disproportionate disbelief of chronic Lyme patients, and the need for systemic change in order to validate their experiences and create practical solutions
• why she is committed to helping raise voices in more marginalized communities
• why it’s more critical to DO THE WORK of erasing stigma and addressing systemic oppression behind the scenes, rather than solely taking part in performative action
• what drove she and her husband to establish Advocacy Express — and how they are leveraging the platform to create legislative change in healthcare
• what we need to change about medical education in the US — and why more doctors need to be educated in chronic disease (outside of what’s easily treated with pharmaceuticals)
• why it’s a crime that insurance companies require patients to be “sicker” in order to address their needs — and thus create long-term dependence on treatments, rather than covering preventive treatments in the short-term
• that there is hope

Tune in as Gena shares:

• that she was likely bitten by a Lyme-carrying tick as a child, but wasn’t diagnosed until she was a teen
• that antibiotics had shot her immune system, and she was plagued with bacterial infections
• that it took her five years to heal once she started to exhibit symptoms
• the role of mindset shift in her healing journey
• why she had to love herself as much as (or more than) she despised her illness
• the importance of consistent holistic wellness in her ongoing health
• that she hasn’t had symptoms for over a decade now
• how her relationship to her body has changed through her healing journey
• that she started therapy when she was experiencing Lyme symptoms — and how vital mental health support was during that time
• that she was intermittently told by medical professionals that her symptoms were all in her head
• how getting sick — and getting well — has been a gateway for her to uncover her most authentic self

Tune in as Dr. Yu shares:

• that he works with his wife, who is a family doctor also certified in lifestyle medicine…and lives with ADHD and IBS herself
• that he developed gout — an arthritis disease — after going on the Atkins diet as a teen
• that in college, his gout evolved into severe arthritis
• how he pushed through his pain during medical school
• that he was drawn to specializing in rheumatology because of his own diagnosis
• that he was never offered mental health or nutrition/lifestyle support for his diagnosis of spondyloarthritis — and it’s inspired him to become the doctor he is today, and buck the system
• hat chronic diseases are increasing by 7% a year
• that he used to see his diagnosis as a curse; but he now sees it as an asset in his work
• that lifestyle medicine centers on whole-food, plant-based nutrition
• that he was inspired after watching Forks Over Knives — and when he experimented with a plant-based diet, his inflammatory markers decreased significantly
• that he’s using lifestyle to manage his health, and is trying to avoid medication until absolutely necessary
• why he spends at least an hour with new patients
• that he’s been moonlighting two nights a week treating and admitting COVID patients to the ER
• why post-COVID syndrome is so frightening
• that he’s witnessed new-onset autoimmune disease following COVID infections in formerly able-bodied people who had a genetic predisposition to the diagnoses
• how the flu vaccine compares to the COVID vaccine
• what mRNA and adenovirus are
• that mRNA and adenovirus do not alter genetic code or DNA
• the short-term side effects of the COVID vaccine
• that the COVID vaccine has indeed been tested thoroughly, and no less so than any other vaccine released to the public
• that, in VERY rare cases, it’s possible to contract autoimmune disease because of vaccination — and that this is known as ASIA (autoimmune induced by adjuvants) syndrome
• that he practices remotely, and currently has 15 state licenses in order to serve his patients
• his take on the US healthcare system

Tune in as Rana shares:

• that she struggled with a weak immune system as a kid
• that she started having chronic knee pain at the age of 15
• that she was recently diagnosed with osteoarthritis in both of her knees
• that her previous diagnoses of depression and anxiety were blamed for her physical issues early on — and she was brushed aside by doctors and her pain not taken seriously
• how her physical pain began affecting her ability to work
• that she experienced debilitating pain from the onset of her period — and realized eventually that it wasn’t normal
• the textbook PCOS symptoms she experienced
• how the PCOS diagnosis was validating
• that she uses cannabis regularly to manage her pain and mental health
• what her day-to-day looks like as she works around chronic pain
• how her upbringing influences her momentum to this day — the idea that she should overcome and carry on
• the importance of listening to our bodies
• that she grew up in a strict Muslim household — and her family denied her mental health struggles
• how her identity has impacted her experience in the medical industry
• why it’s vital for her to vocally support the Black disabled community

Tune in as Michole shares:

• how she first started experiencing symptoms
• that it took almost three years and several hospitalizations for her to get a diagnosis
• that her symptoms overlap with numerous other chronic illnesses
• that polymyositis is a progressive disease, and largely affects her limbs
• that she was never offered mental health support along her diagnosis and treatment journey
• that she’s now got the additional diagnosis of ILD — interstitial lung disease
• the struggle of being believed when living with invisible illness
• how her mother has stepped up as an advocate for her since her diagnosis, and how they have become even closer as a result
• how caregivers experience chronic illness and disability alongside their loved ones
• the importance of remote work opportunities for her
• why the cost of healthcare and treatments can be debilitating for patients
• discrimination she’s faced from the public
• how race has impacted her experiences in the medical system (and beyond)
• her frustration with lack of representation in rare disease
• how a lack of curiosity in the healthcare system is causing problems for patients
• how she’s learned to say “no”
• why it’s useful to develop a meaningful relationship with your practitioners

Tune in as Rachel shares:

• that she was diagnosed with Crohn’s disease at age 14
• how body image and fatphobia informed her relationship to self from an early age
• why the transition from pediatric to adult medical care is so rough for patients
• a discussion of neurogastroenterology, and the brain-gut connection — and what it means to be a young person living with chronic illness and trauma
• how she connected to somatic therapy as a Spoonie
• how her identity as queer, indigenous, and fat has influenced her understanding of self AND the way she presents to the outside world — especially in the medical industry
• that she wrote her grad school thesis on unlearning fatphobia and medical bias
• that she’s built her entire life and career to be sustainably achievable around her chronic illness
• that she works virtually and on a sliding scale in order to make her work accessible to those who need her help the most
• her experiences of discrimination in a disabled body — and how these experiences have been intersectional with what is visible about her identity, especially her body
• that she is ineligible for stoma surgery
• what somatic therapy is
• what it means for her to decolonize her practice as a caregiver
• why mental health support is so important for anyone living with a chronic illness
• the importance of pleasure activism, and what it means

Tune in as Samantha shares:

• that she was diagnosed with Crohn’s at age 18
• that Crohn’s disease can affect any area of the digestive tract, from the mouth to the anus
• why her relationship with the word “remission” is tricky
• the importance of boundaries in order to manage her fatigue
• a discussion about healthcare accessibility and the need for systemic change
• where improvements need to be made in the working world in terms of accommodating folks with chronic illness and disability
• her experiences of medical gaslighting
• how she gets the most out of her doctor’s visits
• what her work in lowering drug prices means to her
• why pharmaceutical price gouging is killing Americans
• that every major country in the world has made it illegal for big pharma to advertise to civilians — except for the US and New Zealand
• how her diagnosis hinders her work options because of drug pricing and access to insurance
• that funding for the research behind the development of many of the drugs that pharmaceutical companies charge us for…came from the public
• that Abbvie makes more on Humira than the profits of ALL NFL teams combined
• that she testified to Congress in favor of HR3 (which is currently stalled in the Senate, though it passed in the House)
• that we are living in an interesting time: legislators are beginning to understand that the public is holding them to their word and watching them
• the vital importance of mental health support for those living with chronic illness and disability

Tune in as David shares:

• how he was first diagnosed with multiple myeloma after experiencing severe back pain
• that he’s been on maintenance drugs continuously for the past 10 years — and these drugs are what have kept him alive
• that at the time of his diagnosis, the median age of survival for his form of cancer was 3-5 years; that has now increased to 8-10 years
• that myeloma mutates and finds its way around drugs — so when treatments stop working, patients typically pass
• that he plans to live to 95 and die of something else entirely
• that the disadvantageous side-effects of his drugs are manageable in comparison to the cancer itself
• how his wife stepped up as a fearless advocate for him until she herself endured breast cancer and its accompanying treatments (she’s a survivor!), and he stepped up for her
• his belief that no cancer patient should endure the “acute” stages of diagnosis and treatment alone
• the importance of looking after his physical and emotional health, and why it’s vital his work be meaningful
• what P4AD does: how they help patients share their stories and are creating communities among these patients
• that P4AD not only engages patients, but patients are also among their staff
• that there is no free market for drugs, and that drug companies have created monopolies to set drug prices and protect those monopolies in whatever way they wish
• that pharma invents groups akin to P4AD, including Patients Rising and the Alliance for Pharmaceutical Access
• how insurance and drug companies monopolize pricing and gouge patients
• where he sees the breakdown of the medical system in the US: that it’s systematically designed without the patient’s access to affordable, comprehensive care in mind
• an acknowledgement of systemic racism in medicine
• that he is also a recovering alcoholic — and has been for 30 years

Tune in as Kayla shares:

• that she was injured during a tour as a dancer — and that this led to all her subsequent health issues
• that she struggled to be understood by doctors and experienced gaslighting
• how her race has played into her relationship with the medical industry
• that she was initially diagnosed with chronic TMJ and eczema before being diagnosed with trigeminal neuralgia (TN)
• the importance of accepting her chronic pain — from within — in order to find solutions
• that she’s cycled through every possible medical solution to TN — from epilepsy meds to opioids
• that she now uses holistic methods to manage her pain: self-hypnosis, breath work, IV vitamins, and reflections on her experience as a doula
• what her pain feels like: and that it can travel from her face all the way to her chest
• that she experienced suicidal ideation as a result of her pain
• that she’s had to teach herself a new way of speaking in order to better manage her pain with mindful facial movement
• how she taps into her spirituality to find healing: through her religious beliefs and connection to her ancestors
• other holistic methods she uses for pain management: CBD, cannabis, and massage
• how the US healthcare system has failed her, and why she looked abroad for inspiration in her healing
• all about becoming radical about your joy

Tune in as Celine, Yael, and Dave share:

• how Flowly offers interactive experiences that teach users to control their nervous system through mobile VR and biofeedback for relaxation training
• that biofeedback is traditionally difficult to access; and now, it’s fully accessible through Flowly
• that Flowly is affiliated with University of Pittsburgh and USC to make sure their app is truly efficacious
• that the work of biofeedback — and Flowly — is in creating new neural pathways
• how Celine’s upbringing influenced her to create Flowly
• the goal of StuffThatWorks: to empower patients and medical professionals through the creation of knowledge bases that are automatically analyzed and personalized
• how the information shared through StuffThatWorks is helping build the world’s largest and most up-to-date database of patient reported outcomes for every chronic condition
• that within each community on the StuffThatWorks platform, members can see insights about anything from age of onset, to most reported and most indicative symptoms, early symptoms, indicative comorbidities, aggravating factors, treatments, and more
• how AI crowdsourcing has the potential to fill the gaps in our understanding of medicine
• that so many clinical guidelines were written decades ago — and StuffThatWorks creates the opportunity to recreate the knowledge base for various chronic conditions en masse
• why Yael started StuffThatWorks: because her daughter had a chronic condition at a young age
• how technology has the potential to eliminate bias
• how Dave was inspired to create his company after his own battle with maladaptive stress syndrome and gut health issues
• about the potentially life-saving importance of managing and monitoring our own health records
• that as the doctor/patient relationship becomes increasingly depersonalized and decentralized, it’s vital we track our own medical records to present a full picture to caregivers
• why data access is empowerment; and that in enabling people to bring their health records together in one place, patients can prevent a misdiagnosis when medical emergencies arise
• the founding principle of Heads Up Health: that well-organized data holds the key to optimal health

Tune in as Nitika shares:

• that she didn’t feel comfortable leading conversation about her chronic illnesses until 2017
• how she has grown as a patient advocate — and what this role means to her
• how she understands “toxic positivity”
• how she pivoted from Chronicon as an in-person event to an online community, as a result of COVID
• why the Chronicon Community is about meeting you where you are
• how to join the Chronicon Community
• how she showcases community members regularly in the Chronicon Community
• how Chronicon addresses the decolonization of wellness
• how she views diversity in advocacy
• what future events in the Chronicon Community are looking like
• how her morning routine really helps keep her balanced
• why it’s important to invest in your relationships
• why — as Toi Derricote says — joy is an act of resistance

Tune in as Jaime shares:

• that she was diagnosed with migraine at eight years old
• that she has lived in chronic pain since the age of two — in the form of abdominal migraine
• that her mom also lived with migraine — and as such, she had a shoulder to lean on from the very beginning, as well as someone to learn advocacy from
• that having support from such a young age was critical to the foundation of her advocacy work
• how chronic pain is directly connected to mental health — and that she lived with depression from an early age because of her pain
• that she was diagnosed with fibromyalgia in 2012
• that she developed fibromyalgia as a direct result of persistent daily migraines, which had her central nervous system working in overdrive
• that migraines often have no known cause, and are totally individual to the person who lives with them
• that she manages her pain with a combination of medications and holistic methods: Botox, nerve blocks, massage, CBD salves, and meditation, among others 
• that the pain scale is subjective, and her pain is at level 2-5 daily
• that aside from chronic pain, she also lives with gastric distress symptoms every day — and how the brain-gut connection is so clear when you live with chronic pain conditions
• how she finds self-worth and confidence in her relationships…and beyond her pain
• how she minimizes stress to manage her spoons
• how she tackles the “angry Black woman” and “hysterical” narratives
• that migraine is so much more than a headache
• what’s coming up for her: she is the lead writer on a new white paper aiming to address disparities in communities adversely affected by migraine and headache (the incarcerated, immigrants, and BIPOC, among others)

Tune in as Brittany shares:

• how she realized something was up…her muscles were recovering much more slowly and keeping her behind her peers physically, among other symptoms
• that she grew up in rural South Carolina, which affected access to the right kind of medical care for her condition
• that adrenaline makes her condition worse — so a fight-or-flight reaction can be very dangerous for her
• that the diagnosis was, in part, a relief for her — because it validated her sense that she was living with a condition that was affecting her body
• that PMC requires genetic testing to confirm — but nobody in her family has the gene mutation. However, there’s a 50% chance she can pass the disorder to her future children
• that PMC isn’t curable, and that the side-effects of medications she tried actually made her symptoms worse — she she opted out of medication and turned to lifestyle and nutrition
• that potassium and sodium most directly affect her muscle spasms
• that figuring out her triggers and symptom management has been a process of trial and error
• that she only connected to others living with PMC in recent years
• that the severity of symptoms and response to treatment varies widely from patient to patient
• her keys to successful movement: water, breaks, and snacks
• that extreme cold can cause paralysis for her
• how she’s working on communicating about her condition — especially because it’s invisible
• how gender has impacted her medical care
• how awareness is impacted by lack of research funding, and vice versa — where rare diseases often get lost in the shuffle
• that those living with PMC can’t go under general anesthesia (because of its potassium content) — and she still needs to figure out how to alert emergency care if necessary
• how she finds solace in nature

Tune in as Jeniece shares:

• that she knew her son, Christian, had a seizure disorder around age 2, when he had a grand mal
• that it took more than one doctor to diagnose Christian — and Jeniece was empowered to seek second opinions because her mother is an anesthetist, an “insider” in the medical industry
• that Christian was diagnosed on the autism spectrum at the age of 3
• that Christian is largely non-verbal, but clearly engaged with the world around him
• why she founded Special Needs Siblings
• the role of caregiving and the importance of support for siblings and parents of individuals living with disabilities and/or special needs
• how she’s tackling home school during the pandemic — with 6 kids at home!
• experiences of discrimination she’s faced in medical and community settings, and how she’s had to stand up for Christian’s needs against pushback
• what makes a good medical provider
• what’s next for Special Needs Siblings and for Christian’s care

Tune in as Kelly shares:

• how Adelaide was initially diagnosed as an infant
• that Adelaide’s longest stretch seizure-free was three months long
• that in 30% of epilepsy patients, seizures are intractable despite intervention
• that 1 in 26 people will be diagnosed with epilepsy in their lifetime
• that while certain types of epilepsy can be rare, epilepsy itself is not
• that there is a lot of stigma attached to the diagnosis — especially for adults
• why NOT to call an ambulance when you see someone having a seizure
• that epilepsy is always a symptom of something else: from TBI (traumatic brain injury) to genetics
• the need for more funding in epilepsy research
• how she acted as an advocate for her daughter
• how she learned to speak medical jargon to be taken more seriously by Adelaide’s doctors
• the importance of mental health support in the grief journey
• that Adelaide also had MCAS (mast cell activation syndrome) alongside her epilepsy — and her epileptologists often saw these comorbidities occur together
• why research gives her hope
• the importance of documenting seizures with video

Tune in as Natalie shares:

• how she was first diagnosed with epilepsy
• that she’s had periods of seizure inactivity that have enabled her to go off medication
• that by the age of 28, damaged tissue on her left temporal lobe had expanded — and a surgical implant was suggested in order to remove the tissue safely
• that the cyst on her brain has never been removed, because its removal could paralyze her
• that surgery really helped control her seizures, and reduced their severity and occurrence by about 80%
• how her family has provided her with emotional and practical support
• why she is a cannabis advocate
• that meditation has been an effective coping mechanism to control seizure activity
• when and how she reveals her condition to dates, employers, and the like
• why she founded Angels of Epilepsy

Tune in as Vatesha shares:

• that she was diagnosed with stage 2B breast cancer at 36
• that she was referred to a fertility clinic to freeze her eggs before treatment started
• that she had a lumpectomy because she was negative for the BRCA gene; additionally, she endured chemo and radiation
• that the most devastating result of her chemo was the loss of her hair
• that her 6th anniversary is on 11/29 this year
• how strong she feels having defeated cancer
• that she will be living with the fear or recurrence for the rest of her life
• how she’s organized her present and future lifestyle around ongoing prevention
• the importance of mental health support for life-changing diagnosis and treatment
• why her health isn’t hers alone — it belongs to a community
• the importance of Black female voices in breast cancer care
• why it’s vital we know our family health history

Tune in as Bassima shares:

• that she was diagnosed with stage 4 endometriosis and chronic back pain
• that she was told for 2 years that her pain was all in her head
• that she had endometriosis excision surgery — and it was a 5-hour procedure
• that stress and lifestyle really contributed to her back pain
• that working with one of her SkinTē co-founders, Dr. Amy Bader, to get on an anti-inflammatory diet helped alleviate numerous symptoms — but she still required surgery
• how she’s optimized her work-life with her health at the forefront of her mind
• her experience with pain suppression — and how it took a doctor to advise her to speak up sooner: “Do not wait for the knife to hit your bone”
• how she has operated in corporate environments to liberate her own story of pain and hormonal imbalance
• how her illnesses — and Dr. Bader’s patients — inspired them to partner with chef Elizabeth Zieg in creating SkinTē to make collagen ingestion more enjoyable
• how collagen has aided in her healing — especially her joints and gut (and the data behind collagen ingestion)
• the importance of functional medicine, and how she has accessed it through Parsley Health
• how she has learned to see food as medicine

Tune in as Lauren shares:

• that her gynecologist first discovered she has a tilted uterus — a common trait often associated with endometriosis
• that she was diagnosed with endometriosis in 2011
• that she manages endo with lifestyle and diet changes, but still lives with chronic pain, nausea, allergies, and brain fog
• the importance of advocating for oneself when it comes to healthcare
• why self-advocacy is harder as a Black woman — because of prejudice associated with the trope of the “angry Black woman”
• how her symptoms have changed over time
• that endometriosis is a multi-systemic disease
• how her diagnosis has affected her relationships
• how she practices self-care
• why it’s important to be organized when you live with a chronic illness
• her experience of medical and systemic racism, especially in relation to women’s health
• why she founded ENDO Black: because she couldn’t find other Black women living with endometriosis
• about the Black Women’s Health Coalition

Tune in as Nkem shares:

• that she was first diagnosed with uterine fibroids in 2015 because of excessive bleeding and clots
• that she normalized her body’s gynecological dysfunction until she was entirely unable to function at all
• that she developed cardiomegaly (enlarged heart) to compensate for the lack of blood in her body caused by uterine fibroids
• that she has yet to have fibroid surgery because of (not unreasonable) fears about the process
• that she has been prescribed various forms of birth control to manage her bleeding
• that BC is masking her symptoms and not treating the root cause, but she’s been working through her own fears about fibroid surgery
• her concerns about fertility in relation to the presence of her fibroids
• that she didn’t know how to effectively advocate for herself until she became a member of The White Dress Project
• that she felt immense shame about her diagnosis until she made a friend who showed compassion and encouraged her to seek further care (and yes, people who work at HHS can indeed feel timid about their own health!)
• that based on her research, individuals living with HIV are more likely to be victims of intimate partner violence (IPV)…and those living with intimate partner violence are more likely to contract HIV
• the importance of community in patient advocacy — and how this work can strengthen our humanity
• how collective action can make a difference
• how fibroids have affected her relationships and experiences
• from whence she draws her strength
• why your relationship with your healthcare providers should be a partnership in your care

Tune in as Jahlove shares:

• that Sex Ed when he was a teen was entirely hetero-focused, and as such, excluded him from the conversation
• that he contracted HIV when he lost his virginity at the age of 16, and later recognized the incident was rape
• that his mother kicked him out of the house and he was rendered homeless not long after
• that according to NYS law, any individual 13 years of age or older can get privately tested for any STD and pregnancy — and get treatment — as long as they give consent to their healthcare providers
• that there are actually two different strains of HIV
• that in the US, HIV/AIDS is primarily contracted by men who have sexual contact with other men; but that globally, HIV/AIDS is primarily a disease contracted by individuals engaging in heterosexual sex
• that his diagnosis inspired him to go back to high school, get into college, and begin to pursue a career as a dancer and entertainer
• that it took years of ill health — and an AIDS and cancer diagnosis in 2008 — for him to confront his diagnosis and start taking his medication regularly
• why your health is your own responsibility
• that so much ignorance and stigma about HIV/AIDS still persists, and that he combats that in his work both as an educator and as an entertainer
• that he has found joy and resilience in his advocacy work — a joy and resilience that touches each of his intersectional identities as a Black gay HIV+ man living in America
• why the trans community is so important to him
• a background lesson in the early AIDS epidemic — and the role of medical racism, homo- and transphobia in early AIDS advocacy
• why his work in public policy is so important to him
• his commitment to make and hold space for the next generation of advocates

Tune in as Giuliani shares:

• that they received their status abruptly while living in the Bay Area; but with the help of a wonderful case director, became undetectable within a month
• how understanding their friends and romantic partners have been about their diagnosis
• that being HIV-undetectable means they cannot transmit the virus to anyone
• the importance of open communication with potential lovers
• how they’re addressing HIV laws in Louisiana, which often stigmatize and criminalize HIV+ individuals
• how they have learned from their past and are using their experience as a tool to create change
• why racial bias in healthcare is a public health crisis, and needs to be addressed in the legal field
• that they are an ambassador for the CDC’s Let’s Stop HIV Together campaign
• how housing, detention, and immigration play a role in public health
• why advocating for people over property and profit is essential for universal healing

Tune in as Charles shares:

• how he was first diagnosed with AIDS in 2003, and almost died
• that he’s had only positive experiences with his doctors since being diagnosed
• how he balances holistic and medical treatments for HIV
• that he took advantage of mental health care support early on, and continued to do so
• a discussion of the stigmas associated with an HIV diagnosis
• why he believes in universal healthcare
• the importance of community when living with chronic illness and disability
• how dance nourishes him
• the importance of perspective and openness to new information

Tune in as Ade shares:

• that testing for sickle cell among infants was limited in Nigeria when he was growing up there
• how being the child of immigrants has influenced his healthcare experience
• the impact of religion on his upbringing — and how it intersected with perceptions of his diagnosis
• that sickle cell is often stigmatized in African cultures
• that he didn’t start advocating for himself until he was in grad school
• that on average, he is hospitalized in crisis 2-3 times per year
• that he has often faced racism in the ER — which, of course, has only exacerbated stress and pain
• that it was a blessing in disguise to grow up with a sister who understood his disease experience
• that bone marrow transplant is currently the only viable cure for sickle cell

Tune in as Bukky shares:

• that her older brother, Ade (next week’s guest!) also has sickle cell
• her biggest crisis triggers: chief among them, stress
• that the transition from pediatric to adult care was a shock to her system
• her experiences of medical trauma and racism
• the push-pull between her ambitions and her body’s needs
• the struggle to have her pain taken seriously in a medical setting
• that she recently changed care to a Black female doctor at Johns Hopkins Hospital, and was incredibly touched by the experience — because her doctor implicitly understood her
• about using her photography as a form of advocacy, in “The Warrior Series” — where she photographs sickle cell warriors looking strong, in order to shift prevailing narratives
• the history of racism at Johns Hopkins — including, most infamously, their treatment of Henrietta Lacks
• how she practices self-care
• that the patient advocacy space is very white-dominated

Tune in as Revée shares:

• what it was like growing up with sickle cell
• how growing up with chronic illness tested her faith
• how her treatments developed over time before her remission
• how her health experiences drew her into a career in medicine
• how she became the first adult in Alberta to undergo a stem cell transplant to cure sickle cell
• that her sister was a perfect bone marrow match, and donated for her stem cell treatment
• that she’s gone from sickle cell patient to transplant patient
• that she’s officially sickle-cell-free — and that this strangely sent her into a kind of identity crisis
• that as a transplant patient, she doesn’t fit into the “traditional” model of aftercare support
• that for her, transplant was a choice — but for most recipients, transplant is the only option
• how her sister’s advocacy played a role in inspiring her to be a patient advocate
• how she became expert at playing down her own pain

Tune in as Sabrina shares:

• that HHT is genetic, and runs in her family
• that HHT causes the development of AVMs (arteriovenous malformations, which cause a tangle of blood vessels that disrupt normal blood flow), which require surgery to repair
• that HHT can seemingly affect anybody, regardless of race or gender; 90% of HHT patients also remain undiagnosed
• how race and gender have affected her experiences in the healthcare system
• that in the past, she has been rendered invisible, and not believed (in the healthcare system)
• that about 50% of HHT patients experience a chest pain called pleurisy — and not enough research has been done to prove whether or not pleurisy is caused by AVMs, repair coils, or HHT itself
• that she has a cerebral AVM, and her brother died from a stroke and seizures caused by one
• the problems with mental health support in the US healthcare system, particularly for those who are living with comorbid chronic conditions
• how important it is for her to bring her culture and her pride to any table at which she sits
• why claiming her sexuality is so important to her — and that for women, sexuality and success are NOT mutually exclusive

Tune in as Amanda shares:

• that Amanda’s sister was also born with a heart defect — which was repaired when she was a baby
• that Amanda had her first open-heart surgery at 7 days old
• that at 12 years old, her doctors discovered she had dilated cardiomyopathy — and gave her a pacemaker
• that her heart was failing by age 13, and she had her transplant at 15
• that most heart transplants last a decade — and Amanda’s has now lasted well beyond expectation
• that she needs a kidney transplant along with her heart — and the kidney transplant is necessary because of long-term use of anti-rejection drugs
• that she’s currently doing dialysis 3 days a week
• that heart attacks have traditionally been regarded as a “white man’s disease” — and that only recently has research shown symptoms to present differently in women
• her experiences of discrimination in the medical system
• that the privatization of healthcare has threatened her family’s stability on numerous occasions
• the importance of bridging the gap between pediatric and adult healthcare
• that she lost friends who were lost in the system during the transition to adult care
• the problems with the US healthcare system, and how it’s linked so closely to education and access to healthy food
• how understanding her own mortality has made her bold and live life without regrets
• the importance of mental health support when living with chronic illness
• how joining her community and speaking about her struggles has given her strength
• that she’s had to learn that spontaneity is OK

Tune in as Kendall shares:

• that she was diagnosed with pediatric liver disease biliary atresia at 8 weeks old — and had her first surgery at that age, as well
• that she had her second surgery at 4 years old — and a grand total of 6 major liver surgeries, to date
• that she had 2 liver transplants at 11 years old — the first a living donor (her Dad), the second a deceased donor
• how liver transplant works
• that she’s coming up on 16 years post-transplant
• that her abdominal muscles are also flipped — a condition called abdominal situs inversus
• that as a result of a surgical complication from her second transplant, her bile ducts narrowed and collapsed — and she had to have a tube inserted to drain her liver in order to avoid sepsis. The tube was changed out every 6 weeks under general anesthesia, from the ages of 11-23
• that when she had an aneurysm of one of her arteries, she narrowly survived — there was only a 2% chance of survival
• that she’s achieved so much because when you face your biggest fear at all times (mortality) — it instills a boldness in you — and she sees that as a huge advantage in life
• that Kids Caring 4 Kids gave her tremendous purpose while undergoing transplants when she was young — and supported her healing
• why it’s so important to fight for disability accommodations in college and beyond
• that medicine is an art, not a science — and still involves a lot of guesstimation. That’s why you should trust yourself above all others

Tune in as Tori shares:

• that she has worked with past guest Dr. Jessica Shepherd for the last 2 years, helping clients manage mental and physical wellness
• that sometimes her work is about bridging the gap between patient and clinician
• that she specializes in grief and loss because she worked as a licensed mortician for 14 years
• that she sees grief and loss not only as the loss of a loved one — but also as losses related to relationships, jobs, home, finance, health, etc.
• the importance of cultural sensitivity and competency in mental health counseling: that often, patients want to talk to clinicians who can understand their experiences
• that she often comes across clients who have not been believed, had requests denied, or felt they were not heard by other clinicians
• that her role is to empower and validate her clients — to acknowledge that their experience is real, and not imagined
• a discussion of the social factors that impact mental health and wellness
• that so much of medical research has been created out of bias — and it’s time to reinvent mental health service infrastructure to support the Black community, among others
• that race, gender, and other inequities in healthcare are a public health crisis of the scale of COVID-19 — or greater
• why she works on a sliding scale with her clients
• why she coaches clients to cultivate life-work balance, rather than work-life balance
• why consistency is key to creating real, lasting change
• why you are one decision away from changing your life
• that it is your right to be healthy in mind and body
• why everybody needs a therapist

Diana Chao is a 21-year-old first-generation Chinese-American immigrant from southern California. During her sophomore year of high school, bipolar disorder nearly ended her life…and inspired her to create non-profit Letters To Strangers (L2S), which uses the healing power of the written word to create awareness of mental health and illness, and spread comfort as “humanity distilled into ink”. Today, L2S is the largest global youth-for-youth mental health nonprofit, impacting over 35,000 people on six continents. For this effort, Diana has been named Oprah Magazine's 2019 Health Hero, the youngest winner of the Unilever Young Entrepreneurs Award, and the only American winner of the 2019 Global Changemakers cohort. As part of Adobe's inaugural class of global Top Talents, Diana seeks to further the intersection of creativity and social impact through conceptual photography. Her Minority Mental Health Month self-portrait series went viral with 2+ million views, and she gives workshops and speeches on youth mental health.  She’s also a 2020 recipient of the Diana Award, named for Princess Diana and honoring youth changing the world. But most of the time, she is a third-year at Princeton University trying to wake up for class on time. And, as you will soon learn: an absolute delight.

Tune in as Diana shares:

• that she was diagnosed with bipolar disorder at the age of 13
• that she struggled to validate both her disorder and diagnosis
• how culture — and the immigrant experience — has played into her experience of mental health support and awareness
• that she has also been diagnosed with autoimmune eye disease anterior uveitis, which causes temporary blindness
• that anterior uveitis was her way in to increased medical care, and gave her access to a psychiatrist — which played a huge role in her access to ongoing mental health care
• that her brother found her during her last suicide attempt, and her honor and love of him helped shift her perspective on her self-worth
• that writing and connecting has been healing for her — which is why she founded L2S
• that L2S started as a student club during her sophomore year at high school
• that L2S is as much about connecting the community as it is about changing access to and integration of mental health support services in schools around the world, destigmatizing conversations about mental health and illness
• that she’s been episode-free for the past 2 years
• that over 80% of mental health practitioners in the US identify as white — which causes difficulties in treating patients with diverse backgrounds who don’t necessarily feel fully understood
• that in the mental health DSM, culture-bound symptoms are mostly included only in the appendix
• that L2S is also creating inroads for young people of color to pursue careers in mental health care
• that — understandably — she got into a depression spiral during quarantine for COVID-19
• why the basic concept of self-care comes from a place of privilege

Tune in as Dana shares:

• how Rob was first diagnosed with autism spectrum disorder at 4 years old
• that support services when Rob was first diagnosed — in the late ‘80s — were far from comprehensive
• that her parents were lured into many biomedical therapies when Rob was a kid — none of which have been proven effective
• that so many treatments for autism focus on the condition as a defect — and that her family never subscribed to that POV
• that Rob is semi-verbal, and his family has learned his communication tools
• that at 21, Rob was involved in a traumatic assault incident that left him with PTSD— and that he and his family only began to overcome 10 years later
• that in Dana’s household, her father is the sole source of income — and that COVID has caused a lot of anxiety as a result
• the importance of maintaining your mental health as a caregiver
• how prejudice and privilege have affected Rob’s movements through the healthcare system
• that the adult services area of autism care is far from ideal
• that vaccinations and ABA are very divisive topics in the autism community

Tune in as Dan shares:

• that he didn’t know anything about autism until he was diagnosed on the spectrum — at 26
• how Dan’s mum-in-law suspected his diagnosis and encouraged him to seek assessment
• that he was probably one of the last people in Wales to receive an Asperger’s diagnosis — before the DSM-5 moved Asperger’s, autism, and other developmental disorders under the umbrella of autism spectrum disorders in 2013
• that his diagnosis was liberating, and helped him understand past behaviors
• that the conservative government in the UK imposed austerity measures that have made Dan lose essential mental health support services
• that he’s in the middle of writing his second book
• the importance of the patient voice in autism advocacy — and how infrequently we have access to resources for the community, by the community
• how he structures his day with apps and activities, and why he’s committed to self-improvement
• about his issues with small motor skills and spatial awareness
• why he needs to be able to control his environment to some degree
• how autism diagnosis and treatment protocols serve men much better than women
• why autism is f**king cool
• how the NHS is inaccessible for individuals living with autism
• why YOU are f**king awesome

Tune in as Jen shares:

• how Knox was diagnosed with autism — and how his family views his disorder as natural, and embraces his needs
• how Jen and her husband have been sure to monitor Knox’s needs and environments so he can thrive
• how Jen created the first zine to support Knox — as a fun guidebook for his teachers
• that Jen has sought Black joy in autism, and uses design to demonstrate it
• how she supports her neurodivergent students at Bowie State University
• how she has created structures to support Knox and accommodate his needs
• how Knox’s Blackness intersects with his disability from a healthcare and human perspective
• a discussion of the injustice of racial discrimination and inherent bias — and why Jen has intentionally created a safe space for Black disabled individuals and caregivers to occupy
• how Jen works with her community to keep Knox safe as a Black autistic child
• why she has Knox registered with the local police in her area
• how she was diagnosed with Graves’ disease at 21, and was given radioactive iodine treatment to effectively “kill off” her thyroid
• how little guidance she was given for her long-term health after her own diagnosis
• that art is a form of self-care for her — and for Knox
• what intersectional allyship really looks like
• how she plans to work toward an official diagnosis of ADHD
• where you can get your free printable #BDLM images, and how her design has swept the world in community protest

Tune in as Tanika shares:

• that The White Dress project are authors of legislation that has gone through the US House declaring July Fibroid Awareness Month
• that Tanika’s mother also has fibroids, and lost two sets of twins because of them
• why The White Dress Project advocates for fighting to create a healthcare team that works in partnership with you
• what fibroids are: benign tumors that can grow in or around a woman’s uterus, and can cause a host of issues from pain and heavy bleeding to bladder issues and miscarriage
• that you can have fibroids and be asymptomatic
• the importance of healthy lifestyle in maintaining long-term health and avoiding the growth of further fibroids
• the psychological impact of living with fibroids
• how bias has affected the care she’s received — from access to care as a thin woman, to race and gender
• that Black women are disproportionately affected with fibroids — they grow larger, Black women are more symptomatic, and hysterectomy is often offered as a first course of treatment well before it’s typically offered to white women
• how medical research in women’s health is affecting Black women’s care
• why it’s important that women vote and run for office — and how this reflects back on our medical care
• the importance of redefining the power dynamic of the patient-doctor relationship
• how medical bias affects women’s health — and especially Black women’s health
• why we all have to do internal work to eliminate bias

Tune in as Lisa shares:

• that she was first diagnosed 12 years ago — 6 weeks before her wedding
• that chronic illness treatment is always focused on the physical, and rarely addresses mental health and other holistic concerns
• what dermatomyositis is — a progressive muscle disease that also attacks and weakens her immune system
• that in 2010, she had a DM flare that left in hospital for a month, and led to such severe muscle weakness that she had to learn the basics of motion all over again
• why her life is “firmly cast in Jello”
• what pacing looks like when you’re living with chronic illness
• what to expect at her free virtual summit this month

Tune in as Erica, Sarah, and Henriette share:

• Sarah got sick at 20, and didn’t get her diagnosis of SIBO until 5 years later
• how rare a diagnosis of SIBO can be, but how common Sarah’s experience in the medical system — both in the UK and in the US — was
• Sarah has been treating her condition with a low-FODMAP diet, among other protocols
• Erica was diagnosed with lupus a decade ago, and waited 3 years for her diagnosis (she was originally misdiagnosed with ankylosing spondylitis)
• Erica’s main lupus complication: pericarditis (inflammation and fluid around the heart), which has become chronic
• that Henriette had her first kidney transplant at 19 (her mother donated); 20+-years later, her husband was her second donor
• that Henriette developed drug and alcohol addiction between transplants
• that Henriette has also developed nerve damage which has left her in chronic pain; she also lives with migraines
• that addiction recovery is daily work; Henriette relies mainly on spirituality to remain in recovery, and makes the decision to heal every day
• Henriette’s early understanding that she had to literally perform illness — she had to LOOK sick and avoid wearing makeup, etc. to be taken seriously by clinicians
• how COVID has coincided with chronic illness diagnoses, and how it’s affected social response in the Spoonie community
• their takes on the healthcare systems in the US, UK, and Canada
• a discussion of representation in the disability and chronic illness space — because so little media is actually representative of the range of experiences in the community
• that Henriette’s own father died of alcoholism at 38
• the importance of community if you’re living with chronic illness or disability

Tune in as Sheryl shares:

• that she had a mild stroke at 14, at which point blood clotting disorder antiphospholipid syndrome (APS) was diagnosed
• that she has to take blood thinners daily in order to prevent clotting
• that APS is usually diagnosed in late-stage pregnancy, as it can cause miscarriage — so Sheryl was unusual in that her case was diagnosed sooner
• that at 17, she had her first brush with death when she suffered a massive blood clot in her lung — and a doctor didn’t take her seriously at first
• that because the episode with APS at 17 was so severe, it likely triggered the genes for lupus, Sjögren’s, and more
• that her second brush with death came at 25, when one of her heart valves prolapsed
• that she raised funds ($100K USD) to have her prolapsed valve repaired at the Cleveland Clinic with minimally-invasive techniques
• that because of her experiences, she is no longer afraid of death
• how she is constantly balancing her mental health and chronic pain
• how she’s become her own advocate, and become skilled at firing doctors who aren’t working with her
• that her medications cost $1-2K/month, despite a chronic illness payment scheme
• that pain is often not the worst part of chronic illness: isolation and fatigue can be just as difficult to deal with
• that mental health issues come along with all chronic illnesses at some point — and need to be taken care of from diagnosis. Sheryl recommends adding a therapist to your medical team ASAP
• why it’s important for all your doctors to work with you, and be open to communicating as a team
• why it’s important to trust yourself and your own knowledge of our body
• why it’s important to ask for help and seek community

Tune in as Keisha shares:

• that she was diagnosed with muscular dystrophy after an MRI and muscle biopsy
• that when she was first diagnosed, she knew nothing about her condition
• that she was very much in denial of her condition early on
• that muscular dystrophy is a progressive condition, and that her limb-girdle type also affects her heart
• what muscular dystrophy is
• that because her condition is progressive, she’s slowly deteriorated physically — beginning at first with a cane, then a walker, and now full-time in a wheelchair
• how much more independent she is in her wheelchair, which she adopted in 2019
• how she’s decorated her wheelchair to customize her appearance
• how she’s connected with other Spoonies through social media
• the grieving process of being diagnosed with a progressive and chronic disease
• how she unwinds
• why she's still working toward accessibility equity as someone who is wheelchair-bound
• discrepancies in insurance coverage, from prescriptions to mobility and transportation as a disabled person
• what’s next in her business: a Girls Chronically Rock adaptive clothing collection
• her top tips for staying happy and fulfilled when living with a disability

Tune in as Alicia shares:

• that she was diagnosed with seep apnea in 2010
• that in 2016, she started having pain in her body during a pregnancy — and was diagnosed with osteoarthritis
• that she grew a goiter in her neck and was later diagnosed with Hashimoto’s disease
• that she miscarried her son’s twin and has had 8 miscarriages, as well as a blighted ovum
• that despite all her miscarriages, no doctors ever flagged fertility issues in her medical file until she had her last son
• the medical PTSD she developed in relation to her fertility because of her many miscarriages
• that fat women have to fight harder to be treated normally when it comes to pregnancy — because so many doctors resort to C-sections before they become necessary
• that as a fat Black woman, she has been discriminated against in multiple medical scenarios — from being told to lose weight, to being put on unnecessary medications, to being ignored and not believed (re: pain, labor, and more), to procedures performed while she was unconscious that were not communicated — to facing her own mortality
• that in hindsight, many of her later birth experiences were likely influenced by mounting thyroid concerns
• that she developed Asherman’s syndrome in the midst of her pregnancy issues
• how her weight, age, and race played into delays in treatment tantamount to medical malpratice
• that she’s been told she needs a hip replacement because of her osteoarthritis, but her doctors are requiring her to get a gastric sleeve (to lose weight medically) in order to give her the replacement
• how she feels about weight loss surgery as a proud fat woman — and how this new experience relates to her struggles with eating disorders
• how food deserts affect health — and how food deserts often surround Black communities and communities of color
• why it’s so important to know your family medical history
• why she uses mobility aids
• what it’s like to be a special-needs mom in the midst of her many personal health concerns
• that she’s been committed to the psych ward before (for a week, about a decade ago) — and recognizes the importance of mental health in her total wellness journey
• her tips for living a full, self-aware life — from one’s own health, to being a special needs momma

Tune in as Annelise shares:

• that she was diagnosed with Crohn’s disease when she was 24
• that she sought therapy early on in her diagnosis, and recognizes it as one of the best moves she’s made in her chronic illness journey
• that she had to leave her job in order to heal her body — the 9-5 grind was not sustainable for her anymore
• that she launched her own business in order to work around her body’s needs
• that so much of healing is about finding your individual formula
• that being stressed about finances is “no way to live”
• her top tips for chronic illness patients looking to organize their finances
• why it’s important to have a will and healthcare directives, especially if you’re a young Spoonie
• the importance of mindset in the healing journey
• her views on money: that it is to be used to live your life more intentionally — and that it can be used to nourish your life
• why her job is to help clients to use their money to reduce stress and create joy

Tune in as Joe & Danielle share:

• that they were winners of “Hilarious Patient Leaders” at the WEGO Health Awards 2019
• that Danielle changed majors because of her ill health, and wasn’t diagnosed with UC until she was 22
• that getting a diagnosis was a relief, and gave Danielle a plan of action
• that Joe had appendicitis at 14, and believes this was the first flare of his Crohn’s disease
• that like Danielle, Joe wasn’t diagnosed until he was a young adult
• that Joe’s diagnosis took 1 year to ascertain, and Danielle’s took 6 years
• why Joe and Danielle both ended up with ileostomies
• all about Danielle’s car toilet
• what “Ostomy Bombing” is, and why they do it
• how they met
• that there are local support groups available through the Crohn’s & Colitis Foundation, as well as the United Ostomy Association
• their work speaking to legislators and creating policy change in favor of patients
• the importance of clinical trials to advance treatment options for IBD and other chronic illnesses
• Joe’s favorite ostomy cover — Carter’s newborn baby onesies

Tina Aswani Omprakash has been a Crohn’s patient for 14 years, and is the award-winning patient expert and advocate behind Own Your Crohn’s. Her aim is to normalize the rhetoric around chronic illnesses and disabilities in order to help patients own their ailments to live fuller, happier lives. Having endured multiple surgeries and overcome the stigma of her disease among family and friends, she is now pursuing a Master’s degree in Public Health at Mount Sinai’s Icahn School of Medicine. Tina is involved in IBD Social Circle and is on the Board of Advisors for the HealtheVoices 2020 advocacy conference. She also sits on the Board of Advisors for Health Advocacy Summit, the non-profit founded by former guest Sneha Dave. Tina was recently awarded the 2019 Healio Gastroenterology Disruptive Innovator Award in the Patient Voice category at the American College of Gastroenterology conference for moving the needle on GI care for patients. Via her platform of influence, she spearheads public health causes, including those proposing research for and creating awareness for inflammatory bowel disease (Crohn’s and ulcerative colitis), life-saving ostomy surgery, gastroparesis, fistulizing disease and initiatives supporting health concerns for women and racial, ethnic & sexual minorities.

Tune in as Tina shares:

• that early on, she was additionally diagnosed with Lyme disease and Epstein-Barr Virus (EBV)
• that Crohn’s disease runs in her family, and was fatal for her father at the age of 39 (when she was 8)
• that at 21, she was diagnosed with mild ulcerative colitis — and neither given the diagnosis directly nor medicated
• proactive steps to take control of your health: requesting your medical records and labs, and seeking second opinions
• her first life-and-death experience: she developed C. diff after taking courses of antibiotics to treat contracted gastroenteritis — and had to leave work and move home
• the cultural stigma associated with IBD as a woman of South Asian descent
• that she had a 4-step J-pouch surgery after a temporary ostomy, but she developed chronic refractory pouchitis — and then went back to Wall Street
• that she developed her first rectovaginal fistula in 2011 — after one year of marriage
• how dehumanizing and desexualizing her experience has been
• that she has traveled to Cleveland Clinic and Mayo Clinic for treatment, and has had over 20 surgeries to-date
• that when trying biologics again to treat her condition, she went into anaphylactic shock — and then later, developed pyoderma gangrenosum, hidradenitis suppurativa, erythema nodosum, and Sweet’s syndrome
• that she spent 6 years with her J-pouch, and developed 4+ rectovaginal fistulas despite the use of biologics and follow-up surgeries
• that her J-pouch removal surgery was botched — by a doctor who had previously saved her life in 2008 — and as such, she was torn about pursuing a malpractice suit
• that follow-up surgery to correct the J-pouch issue revealed an abscess and open wound, which required more extensive long-term care
• her second life-and-death experience: at this stage, she was a ticking time bomb — considered septic, with a fistula growing toward her spine, and told to act fast to avoid potential paralysis
• that she ended up with a JP (Jackson Pratt) drain attached to her bottom and was told she’d need 3 more surgeries — and medical PTSD finally kicked in
• breaking point: when she became suicidal
• how her mom stepped up for her at her worst
• that she now lives with a permanent ostomy
• that she now has an additional diagnosis: gastroparesis (but was also diagnosed with IBS-C)
• that in early 2016, her Crohn’s disease went into remission
• how she’s navigated disagreements between different doctors on her medical team
• that her currently-advised diet consists largely of soup and smoothies
• that one of her doctors now believes she may never have had Crohn’s, but possibly had severe inflammation all along
• that advocacy work has become a coping mechanism for her
• how COVID-19 has influenced her healthcare choices
• how she’s experienced prejudice as a racial, ethnic, and cultural minority — both within and outside the medical system
• that in many ways, “coming out” with her health story 2 years ago was social suicide for her — she lost friends who couldn’t handle either her illness or her outspokenness as an advocate
• the role of mental healthcare in her approach to wellness
• how she got involved in patient advocacy

Tune in as Sarah shares:

• that her main diagnosis is ME/CFS, and she experienced an abrupt onset during her senior year of college, in 2003
• her first symptom: consistent UTIs that couldn’t be eradicated with antibiotics
• her first treatment: a urethral dilation gone wrong, which caused her to develop sepsis
• that these experiences were the beginning of years of pelvic pain
• that as tests began to come back negative, she was immediately referred to psychiatric counseling
• the disparity in funding between AIDS, cancer, and ME/CFS research
• a discussion of medical bias in research and practice
• that she got her CRPS diagnosis 10 years into her medical journey
• that her CRPS presented much like vulvodynia, but the Mayo Clinic finally gave her the correct diagnosis
• that her CRPS has been connected to a neuroma inside her vagina — and for the longest time, she could barely even sit down or wear pants
• that for years, she was denied tests because they would have required her to be under general anesthesia due to her pain — and these tests ultimately revealed the root cause of so much of that pain
• that she endured multiple medical traumas, from biopsies without anesthesia and incorrect device installment, to constant pain and disbelief
• the role of stress in chronic illness: and why so many chronic illnesses are modern problems
• that mistreating patients actively contributes to the worsening of disease
• how her relationship with her parents (who are both doctors) evolved over the course of her illness
• that she was early to research the microbiome and gut health, and was repudiated by friends, family, and doctors
• aspects of the feminine that influence medical bias
• that “pathological niceness” is a personal trait she has modified in order to better serve herself and others
• why the doctor-patient dynamic is one of imbalanced power
• how she practices mindfulness around her “spoons”
• that she’s recently gotten an ileostomy in order to manage her digestive symptoms
• the importance of functional medicine in her health journey and the future of medicine
• how she envisions the future of medicine and patient-hood

Tune in as Lauren shares:

• how she was first diagnosed
• what CIPO is, and how it affects her body
• why she’s permanently on TPN — and how her understanding of nutrition has changed over time and with experience
• how her experiments with holistic medicine failed her
• that while she doesn’t live with chronic pain, she is in chronic discomfort
• that she now has both a G-tube and a J-tube to assist in her digestion, as well as a central line for absorbing her TPN
• just how rare CIPO is
• how she has become her own advocate
• how chronic illness has directly impacted her education and career prospects
• that she is now able to work part-time remotely, matching TPN patients with the best care for them
• why she loves her work, which overlaps with advocacy
• that there is a lot of misinformation out there about TPN
• that TPN is not often or readily prescribed (about 40k/year in the US are prescribed it) — and many individuals prescribed the treatment are given it short-term in the NICU or in hospice — very few people live long-term on TPN, like Lauren does
• that she may explore multiple-organ transplant options in the future
• what eating is like for her, given that she gets no nutrition from food
• the misunderstanding that people living with disabilities aren’t willing to fully participate in life — and how she actively works to challenge that misconception
• why her big-city vs. small-town healthcare experiences have been so vastly different

from the word cyst, a characteristic of the syndrome. PCOS is known to cause weight gain and make that weight even harder to lose — so instead of letting PCOS get her down, Lorna decided to use her diagnosis as a platform for inspiration and motivation for others as she navigates the world … with curves. In this honest, revealing, and intimate episode, Lorna addresses that #bodypositivity life, how she contracted Type 2 diabetes as a direct result of living with PCOS, how she manages a healthy lifestyle, and why representation matters.

Tune in as Lorna shares…

• what PCOS is: an endocrine disorder that begins in childbearing years and typically comes along with hormonal imbalance (usually excessive male hormone production), insulin resistance, hair loss/hirsutism, infrequent ovulation, irregular periods, blood clotting, and infertility/increased risk of miscarriage
• that PCOS is linked to many other conditions
• that some people living with PCOS develop cysts inside their ovaries — and the pain is similar to fibroid pain
• that she was diagnosed shortly after graduating college, while enduring menses that lasted for 120+ days
• that she wasn’t diagnosed right away, and also had to see several doctors before receiving the diagnosis
• that she started having symptoms as early as 12 years old
• that the doctor to diagnose her was Indian, and more familiar with PCOS than any of the American doctors she’d previously seen
• that the historical trope of the “bearded woman” was most likely a woman living with undiagnosed PCOS
• that most women living with PCOS need to be on low-carb diets in order to manage symptoms
• that she had to change her relationship to food
• what it’s like to live with fertility issues — and how she’s found strength in community and in being able to look toward other influencers and celebrities
• how she avoids sugar crashes and fatigue
• how routine supports her lifestyle and symptom management
• discrepancies and bias in research, funding, and awareness because PCOS is a women’s health issue
• that chronic illness changes the course of your life, and supportive mental healthcare is essential as you adjust to your new lifestyle and identity
• why it’s important to become your own advocate and prevent others from policing your body

Tune in as Dr. Shepherd shares…

• about her COVID safety videos on social media
• how she realized she wanted to be a surgeon
• why endometriosis is an illness that she really cares about
• why women often feel shame or guilt around their reproductive health issues — and how she actively seeks to discuss them in the open
• the kinds of diagnoses she commonly sees, aside from endo: ovarian masses, fibroids, fibromyalgia, dispareunia (vaginismus, vulvar issues)
• her approach: to give women improved quality of life, with an understanding of integrative options and the body-mind connection
• that endometriosis diagnosis can take, on average, 6-10 years
• the nature of pain: that it is entirely subjective, but it is up to doctors to teach patients to express what the pain actually feels like so they can accurately diagnose and treat
• understanding the difference between pain that’s normal — and pain that isn’t
• that pelvic pain issues are publicly underrepresented
• understanding how specialists receive referrals, and how to ensure continuity in your care
• a discussion about the use of power morcellators in fibroid removal — and how minimally invasive surgeries have been adjusted since the blackbox warning from the FDA went into effect in 2015
• why she keeps a sex therapist and a relationship therapist on call for her patients
• how the COVID pandemic is showing us the cracks in the US healthcare system
• why it’s worth asking doctors and specialists about their cash rate
• that while lifestyle management is important in overall health, it’s equally important that your choices be sustainable
• when women should begin getting regular Pap smears and other regular sexual health tests, and why they’re important

Tune in as Syren shares:

• that their illnesses are in various stages of diagnosis because of the state of healthcare here in the US
• that when they’ve been insured, they have usually been on a form of Medicaid, which has rarely been adequate (they’ve never been able to access private medical care)
• that they are only able to work part-time, and manages life on a limited income
• that their father was also disabled
• how they rose to the challenge of self-advocacy as an adult
• that a lot of adaptive gear is inaccessible because of its high price point
• that a lot of people learn about adaptive gear through disabled athletes — but we don’t all have to perform at that level
• that so many of us need more than a paved path and/or adaptive gear to make it into the great outdoors — and these accessibility needs should to be acknowledged
• how they have enacted direct change through the National Park Service
• what information could make the outdoors more accessible
• how they’d like to see healthcare in the US change
• why disability “inspiration porn” rubs them the wrong way
• how important it is to ask for help, especially when living with chronic illness

Tune in as Dr. Kandula shares…

• what The Breathing Triangle is, and how it applies to his work
• that if you have obstructive sleep apnea, you have a throat issue — 100% of the time
• the main foci of his practice: sleep apnea, snoring, nasal blockage, and sinus issues
• that he encounters many patients who feel frustrated because the healthcare system hasn’t worked in their favor
• that the success rate in treating sleep apnea is generally only about 30% — but with the proper interventions, it can be treated properly
• that he commonly treats snoring and fatigue (usually caused by sleep disorders like apnea)
• his approach: more integrative and root-cause-related, rather than putting a Band-Aid on symptoms
• that there are too many people walking around in this world suffering needlessly — who ought not to be
• that sleep apnea doesn’t discriminate based on age: it can affect anyone, at any time
• that our airways are evolving to be narrower over time, which is causing more breathing issues during sleep (as well as a host of other complications)
• that our environment has changed over time, exposing us to new allergens
• how he envisions change in the medical system — with a shift to preventive care that could save time and money
• why doctors are experiencing burnout in the current healthcare system structure
• how his practice treats sleep apnea, and how the approach to treatment needs to change

Chris Abdullahi is the founder of The Sound of Sickle, a non-profit organization that raises awareness of sickle cell diseases (SCD) and blood donations in the UK. He has spoken about sickle cell awareness on various platforms, including Google, Facebook, Guys and St. Thomas’ Hospital, and the BBC, and works closely with the NHS Blood Donations team to curate events and sign up new black blood donors. He also lives with hemoglobin SS disease, the most common and severe type of sickle cell — which means he inherited copies of the hemoglobin S gene from both of his parents. In this interview, he sat down with Lauren shortly after coming out of a ‘crisis’, which is the term used to describe the bouts of intense pain that those living with SCD can often experience. They discuss the importance of raising awareness of SCD outside the community, what living with SCD means to him, and how he manages his symptoms on a daily basis.

Tune in as Chris shares…

• what SCD is
• that he was diagnosed with SCD when he was a toddler
• that while SCD is prevalent in Afro-Caribbean communities, there are also instances of it occurring in Hispanic & Asian communities, as well as rare cases in white communities
• that the biggest challenge in treating SCD is in getting blood donations
• how a crisis can manifest in SCD patients — that pain usually ensues when clots are present, caused by sickled blood cells
• what crisis triggers can look like
• that many SCD patients get regular blood transfusions as a preventive measure to avoid crisis
• that SCD is a lifelong chronic condition — patients cannot “grow out of it”
• that he didn’t meet many other SCD patients until he was in his 20s
• the mental health side of managing chronic illness like SCD
• the cultural side of managing chronic illness like SCD
• why he holds back from revealing his condition at work, and how he manages symptoms with his work schedule
• that sickle cell diseases have just been classified as a disability in the UK
• about his work in creating The Sound of Sickle
• that in the UK, black blood donors make up only 3% of the donation base
• why he won’t use stem cell treatments to cure his SCD
• why his friends are so important to his health
• his parting words: “Donate blood!”

Tune in as Andrew shares…

• how he began his legal career, and his focus on ME/CFS cases (and unidentified chronic fatigue cases)
• the wider range of illnesses he’s come across in his practice: MS (multiple sclerosis), Parkinson’s, EDS (Ehlers-Danlos Syndrome), TBI (traumatic brain injury), autoimmune disease (including lupus), mental health issues, and lots of back injuries
• that insurance companies are 20 years behind medical science, and won’t push themselves to the cutting edge until someone else pushes them to
• that so much of the outcome among disability cases comes down to the treating physicians
• information about CPET (cardiopulmonary exercise testing), which is an objective test used to prove the extent of disability, and often used in ME/CFS cases
• why the pain scale is totally subjective in legal defense
• that the CDC is behind on information with regard to ME/CFS — and that there’s nothing more harmful to individuals than when the government takes a bad position
• patients’ difficulty in acquiring needed drugs — particularly opioids for those in need
• that workers’ comp is creating more harm than good in CA — blocking inroads to proper medical care
• a discussion of gender disparity in believing women’s pain
• that he has yet to lose a disability case — and that most settle to avoid litigation
• how his firm makes their services affordable to those in need (i.e., no upfront fees) — and free consultations
• why it’s so critical you read your employer’s insurance policy in detail before signing off on it (paying special attention to mental health allowances)

Tune in as Jen shares…

• that she’s been in hospital and residential school care since she was 15, and wasn’t aware when she was first diagnosed with autism spectrum disorder (ASD)
• that for a long time, doctors and caregivers didn’t inform her about her diagnosis and treatment because they incorrectly assumed she wouldn’t understand
• that she didn’t become aware of her diagnosis until she was a young adult, and this realization was a relief because it validated her, explaining so many of her own behaviors and allowing her to release judgment and self-criticism
• what her early emotional reactions looked like — including self-harming reactionary behaviors
• that she originally thought all people on the autism spectrum were nonverbal
• how awareness (via diagnosis and proper care) has improved her confidence and self-esteem — and allowed her to be herself
• that she responds well to routine, and works to challenge herself to change things up (and share with others how she feels, and that her feelings are valid and relatable!)
• prejudice she’s experienced in the medical system: doctors often addressing her carers and not her directly — without first consulting on address
• that her YouTube channel started with her posting piano videos — and grew from there
• a description of some of the darker moments in her treatment — in state hospitals and psychiatric facilities, where electric skin shock was used for behavior modification
• that until recently, she continued to have nightmares about her violent past
• the role her faith plays in her healing
• the sage advice her mom gave her that changed her life

Tune in as Amanda shares…

• that her sister was diagnosed with nephrotic syndrome (rediagnosed as FSGS, or focal segmental glomerulosclerosis) in 4th grade
• that her sister has now had 2 kidney transplants, and her body has essentially reabsorbed her failing kidneys
• that a transplant can theoretically put FSGS into remission
• that Brenna’s first kidney transplant was donated by her Dad
• that Amanda was able to donate a kidney to a stranger’s wife, and the stranger was able to donate his kidney to Brenna — all through a living kidney donation exchange program
• that it was very hard for her when she discovered she wasn’t a match for Brenna; but that the donation has ultimately made them much closer
• that she has become an advocate since making a living organ donation
• that she recognizes her sister as the real “hero” in their story
• that in the US, someone is added to the organ donor waitlist every 10 minutes
• that she now speaks to her representatives in favor of organ donation and protective legislation for patients
• that support for organ donation legislation is bipartisan, so the foundation for support of patients and donors exists
• that there are limitations to provisions for organ recipients within Medicare and Medicaid, as well as through various health insurance contracts
• that not all transplant centers are created equal, and there is a need for standardization of care in these centers
• how systematic racism plays into access to medical information and treatment

Tune in as Melissa shares…

• that her chronic pain journey started with a sports injury, when she was an Olympic hopeful for CA in the 800m
• that she suffered a concussion and couldn’t even walk up stairs when her chronic pain began — and she was eventually in a wheelchair
• that fibromyalgia had rarely been seen in juveniles when she was first diagnosed as a teen in the ‘90s
• that fibromyalgia itself is far from rare, and its incidence has increased over the years
• that she was placed on numerous anti-psychotics and other drugs, which caused terrible side effects
• that in 2016, still in a state of physical decline (and about to invest in an electric wheelchair), she heard about Dave Asprey and began exploring his approaches, Dr. Terry Wahls’ writing, Dr. Dale Bredesen and his book The End of Alzheimer’s, and functional medicine — and finally began to see a positive change in her health
• that she gathered past labs, studied her inflammation levels, and began to design and implement a 36-variable protocol that gave her back her life
• that mental health has been a big component in her healing
• how she plans to continue the growth of the Support Fibromyalgia Network — through patient education initiatives that empower them to reclaim their health
• that she combats depression by keeping her mind focused and busy — and learning new skills
• that fibromyalgia isn’t currently classified as an autoimmune disease

Tune in as Natasha shares…

• that she was anti-psychiatry before she experienced a breakdown in college
• that she uses vagal nerve stimulation (VNS) as one of the treatments for her depression
• that she lives with bipolar type 2, which means she experiences hypo-manias, and not manias as in bipolar type 1 (both include depressive episodes, but the severity of the manic episodes distinguishes the two)
• that her first doctor refused to properly diagnose her, telling her she had “minor depression”
• that antidepressants can make bipolar worse, rather than better
• that she was dismissed by a number of therapists through university health services
• that she found community and affirmation through her university’s skydiving club
• that coping skills take work, but become easy reflexes over time
• that there is a difference between the brain and the mind — while we can’t control the brain, we can control our mind
• that she has survived suicide attempts
• that the majority of patients living with bipolar disorder experience tolerance to their treatment at certain stages — this is to be expected, and can be navigated
• myths and realities of bipolar disorder
• why it’s important to seek (good) help from a professional
• that seeing a therapist AND a psychologist statistically leads to better outcomes for patients living with mental illness
• the importance of seeking trusted information, and her recommended resources

Tune in as Sylvie shares…

• that she knew something was wrong, but had inconclusive test results — and waited 3 years for a solid diagnosis (20+ biopsies and many doctors later)
• that meditation and hypnosis have been incredibly healing for her
• additional modalities that have helped her: Reiki and healing touch
• that the manner in which the medical treatments recommended for her breast cancer were administered felt both sterile and brutal
• that taking care of yourself with chronic illness is a full-time job — and it’s hardest when you’re alone
• something that really helped her navigate treatment: a workbook a friend co-created with her based on National Cancer Institute guidelines
• that she’s writing a book based on her experience — for both patients and practitioners alike
• that she has developed medical PTSD since starting her cancer treatment
• her realization that cancer is an illness completely misunderstood at the human level
• that it takes great strength to insist on changing doctors when you need to
• that healthcare needs to be redesigned around patient comfort
• how cancer is misrepresented in media
• that cancer is a chronic illness
• the emotional toll cancer takes on a patient
• that chronic illness forces patients to transform — and this involves grieving one’s old self as well as opening the door to one’s new self, and then communicating that to others
• how she has embraced her transformation and is getting closer to who she is now, every day
• that she has made a conscious effort to face her mortality
• why it was crucial for her to find her voice and learn to ask for what she needs
• that you cannot heal by fighting; healing comes from letting go
• that Twitter is her favorite support space as a cancer patient

Tune in as Dibs shares…

• how her early symptoms manifested
• that fatigue comes hand-in-hand with chronic pain, and that these symptoms create mental health concerns of their own
• that her pain was largely in her extremities — hands and feet
• about the Frankenstein shuffle, as experienced by RA patients
• typical age of onset for RA
• that she lived her early years as an out lesbian, and came out as transgender around the same time she was diagnosed with RA
• that her family was very supportive of her coming out
• that she experienced body dysmorphia in relation to her gender identity, and had difficulty looking at herself in the mirror…and that this identity confusion was compounded by the onset of RA, which made her even more confused and angry at her body
• that she has healed mentally with years of therapy
• that she is still legally known by her female-identifying first name, although she goes by “Dibs” — and that this can become an emotional hardship when being called at doctors’ offices and elsewhere
• that she had her breasts removed in 2012, and is uncomfortable showing her scars at certain doctors’ appointments because she fears the judgment of others
• that her treatment includes infusions of methotrexate, a cancer drug — but used in MUCH smaller doses for RA treatment, as well as Remicade (an immune suppressant)
• that RA is closely related to psoriatic arthritis and ankylosing spondylitis
• that one of the most common complaints among RA patients is not wanting to take methotrexate infusions — but in many cases, it’s a necessity for quality of life
• that getting an RA diagnosis made her start taking much better care of herself
• that she fears smoking may have triggered her RA
• that there is a high prevalence of RA among first responders from 9/11 — and she lived directly across the river from the Twin Towers and was in NY in 2001
• that she now plans each day around flares as they come and go
• that her treatments can cause gastrointestinal side effects, and that those can be difficult to work around day-to-day
• how difficult it is to have an invisible disability and maintain a 9-5 job
• that she has to plan her life around infusion scheduling — a constant 8-week cycle
• that the US healthcare system doesn’t help all people equally

Tune in as Sneha shares…

• how she was diagnosed with ulcerative colitis, and what treatment was like in the early stages of her illness
• that she used the restroom up to 20 times a day in her worst flares
• that she weighed about 60 lbs during her freshman year of high school
• that she had a full colectomy in her freshman year of college (removal of her large intestine and colon)
• that she now lives with a j-pouch and has chronic antibiotic-refractory pouchitis —and is still seeking a viable treatment option for this condition
• why bowel disease is difficult to discuss as a young adult
• background on 504 accommodations (disability accommodations for US high school students)
• how Sneha’s mom has been an advocate for her over the years — and how they’ve become closer as a result
• how she seeks accommodations for her illness, and the barriers she’s had to surmount to do so
• her journey to identifying as disabled
• why she started Health Advocacy Summit
• the urgent need for peer support among young women with chronic illness, in particular
• why young adults have such particular needs in terms of disability support, community, and access

Tune in to learn…

• how Brooke recently faced her fears by returning to the place where she experienced her first chronic illness symptoms
• that she didn’t see her first tick bite — but she DID see her second
• that she rapidly lost functionality after her second Lyme infection
• that she sees Lyme as a gift now — she has shifted her perspective entirely
• a run-down of several of the treatments she tried (which allowed her to regain about 40% of her functionality) before discovering BVT
• that a chance run-in with a nurse from a Lyme clinic brought BVT into Brooke’s life
• that she prejudged BVT as “woo-woo”, and initially dismissed it
• that she started BVT, and after a few months tried LDI (not FDA-approved) at her LLMD’s recommendation. It crashed her immune system — and she got so sick she ended up in the ICU after being infected with rare bacteria radiobacter
• that radiobacter is so rare, she’s the only person in the US who has had it — and the only person who’s had it, period, who hasn’t been treated with chemo to eradicate it
• that when she was in the ICU, her family and friends were called in to say goodbye to her
• her realization after surviving radiobacter: that Western medicine saved her life in the hospital, but the medical system is broken — and she needed to stop blindly accepting advice, start asking questions, and do her own research
• “chronic illness can save your life” — and what she means by that
• the importance of balance — and socializing with more than just Spoonies
• that BVT is medicine — it’s only part of the healing picture — and that whole-body health (including mental health) is vital for full healing, as well as an acceptance of the good aspects of Western medicine
• how she empowered herself with research
• how The Heal Hive grew organically from patient outreach
• how BVT supports the bee population
• the potential for bee products to be used in a wider context of healing…and where research is still needed
• a reminder that nature is usually the greatest source of information, if we can return to it for knowledge
• how important it is to invest in comprehensive lab testing so you can get a true picture of what’s going on in your body — and why you need to do your own research in order to interpret the labs
• the importance of eating healthy — and why there is no excuse not to
• the importance of finding a community based in positivity — and outside of victimhood
• the importance of seeking reliable, TRUTHFUL, scientifically-backed information

Kelsey Darragh is a writer, comedienne, and former Buzzfeed producer. She currently hosts the podcast Confidently Insecure, and is a regular on Dating: No Filter, where she boldly shares some of her best and worst dating escapades (season 3 premieres Feb 4th on E!). You may also remember her from a series she did with former guest Lara Parker – Can We Cure – which took them both to a laser clinic in Florida to explore chronic pain management therapies. Kelsey may be funny as hell, but she also lives with one of the most painful chronic pain conditions we know: trigeminal neuralgia (as well as anesthesia dolorosa, a co-morbid condition that causes her to have constant facial pain). An outspoken LGBTQ+ and mental health advocate, she’s also been very open about her struggles with anxiety, and has partnered with organizations like NAMI to raise awareness. In this episode, we get down and dirty on ableism, life with chronic pain and anxiety, gaslighting in the medical industry, and how we need to actively seek to change our perspectives in order to better understand the world around us. Ladies and germs…meet Kelsey. 

Emily Dwass is a writer living in Los Angeles. Having written for numerous publications about food, health, and cultural issues (including the New York Times, Los Angeles Times, LA Weekly, Chicago Tribune, and USA Today), she also served as the “Kid Health” columnist for the Los Angeles Times for four years. She has also written several feature scripts and been a writer on TV shows produced by Disney and Lifetime, among others. A writer by training and trade, she holds a degree in creative writing from the University of Illinois, and a master’s degree from the Medill School of Journalism at Northwestern University. Several years ago, she struggled to receive effective medical treatment and was forced to have a craniotomy to remove a non-malignant brain tumor. This experience led her down the rabbit hole of  adverse women’s health experiences – and she began research into the depth of medical bias, discovering how both medical research AND the health system are, in many ways, rigged against women’s better health. This served as the jumping-off-point for her groundbreaking book, Diagnosis Female: How Medical Bias Endangers Women’s Health. In this episode, she sat down with Lauren to discuss her personal journey and what she discovered. Both shocking and revelatory, her exposé reminds us that health is a human right, and gives us hope that with accurate information, we can begin to better serve everyone. 

Atlanta native Samantha Denäe is a former magazine writer and entertainment blogger-turned novelist, poet, and screenwriter. At the age of 24, she was diagnosed with endometriosis – and turned this devastating revelation into a gift, making it her mission to educate women around the world through partnerships with the Endometriosis Foundation of America and The ENPOWR Project’s Endo Edukit, among others. An outspoken advocate for women living with endometriosis, she bares all in educational workshops and social media posts. While holistic approaches have helped her begin to control her symptoms, she presents a unique take on the nature of women’s pain – and whether or not we were born to suffer. 

Lara Parker is a writer living in Los Angeles. She rose to popularity after publicly discussing her issues living with endometriosis and comorbid conditions, including vaginismus, vulvodynia, vulvar vestibulitis, PMDD, pelvic floor dysfunction, and interstitial cystitis, among others. You may remember her from the short-form docuseries Can We Cure, in which she and fellow Buzzfeed producer Kelsey Darragh tried laser therapy in an attempt to treat their chronic pain (new flash: Lara still uses laser – in case you were wondering, like I was!). Here’s the thing about Lara: she is as real as they come. She sees and acknowledges her privilege, she is unapologetically self-possessed, and she’s mad as hell (listen in to find out why). Her first book, Vagina Problems – a collection of essays that discusses the effects of endometriosis and chronic pain on her life and relationships – comes out October 6th, 2020. 

At this point you’re all pretty familiar with my voice, right? Well, as we head into the holiday season and close in on our one-year anniversary (!!), we thought it was time we gave you what you’ve been asking for: more of me! This episode was initially recorded for a FB Live appearance with Naomi Batty of Holtorf Medical Group – and we had such a great chat, I thought it would make the perfect round-up for 2019 and give everyone more of an insight into my WHY – and how the podcast was born out of my adverse health experiences. Learn more about my journey through Hashimoto’s disease, sleep apnea, depression, and anxiety – and how I’ve found strength in the community that Uninvisible Pod has given me. Y’all are my secret sauce – and if I know how to do anything, it’s how to tell stories…and give you the platform to share yours. Here goes nothin’! (Please also note: this episode was recorded a few months ago, and in it I mention I am a finalist for the WEGO Health Awards 2019. By now you probably know – I won!) 

Join us as we revisit some past guests to discuss new topics! Trishna Bharadia and Anisha Gangotra are sisters – both thriving with their own chronic invisible illnesses. Trishna lives with MS (multiple sclerosis) and works tirelessly as a patient advocate; Anisha lives with UC (ulcerative colitis) and has also survived PTSD (post-traumatic stress disorder). Anisha was inspired by her own journey to begin teaching inclusive dance classes – which Trishna frequently attends! The two are a wealth of information and experience, and are incredibly close…chronic illness seems to have brought them closer, rather than pushing them apart. In this episode, Lauren sits down with them to get more into the nitty gritty of their healthcare experiences – including their take on the NHS. 

Camille Thornton-Alson is a classically trained actress, coach, and teacher. A longtime friend of Lauren’s, the two met while studying abroad in London – right before Camille began a stint in Paris at L'École Internationale de Théâtre Jacques Lecoq. Following her stay in France, Camille returned home to the Bay Area and was immediately stricken with a mysterious illness…one that took her almost a decade to break through. Mistakenly diagnosed with chronic fatigue syndrome, for years she struggled to find her footing while maintaining an active career in the arts (and graduating with a MFA from the University of Washington). Eventually, she was diagnosed with lead and mercury poisoning…and after years of inner remediation (think major detoxing and every change in diet – and in mindset – that you can imagine), she now lives a full and functional life, mindful of her sensitivities. She teaches acting at Santa Barbara City College and USC, among others, and is the co-founder of Speak LA, an organization founded to help actors find their way in Hollywood. In this episode, she sat down with Lauren to share her journey – long and winding, but with a happy ending indeed. 

Thomas Smith is a an international consultant providing expert patient insights; diagnosed with cystic fibrosis (CF) as an infant and taking control of his livelihood in his late teen years, he is now involved with numerous patient advocacy groups that span the rare and chronic disease spectrum, with a focus on mental health. A former member of the European Health Parliament in Brussels, he’s an expert patient reviewer for the European Medicines Agency, a trustee at Britain’s biggest national mental health charity, Mind, and works for the Research Ethics Committee (as part of the Health Research Authority) of the NHS. He also works with patient organizations all over Europe, including the European Patients’ Forum, EURORDIS, and EUPATI. Combining experience of policy, clinical research, and media representation skills with an unshakeable belief that meaningful patient involvement is key for sustainability and meaningful innovation in healthcare, Thomas is a constructive challenger of the status quo. As in previous CF patient interviews, you may hear him clearing his throat periodically throughout this interview – it is to be expected![Text Wrapping Break] 

Jaelin Palmer is a 25-year-old activist and organizer living with CRPS (complex regional pain syndrome, or reflex sympathetic dystrophy) and TN (trigeminal neuralgia). She was diagnosed with CRPS at 15, following a jaw surgery gone wrong; the TN diagnosis came much later, despite her extreme chronic facial pain. Her mother, Natalie, joins us in this special mother-daughter interview not only because she is Jaelin’s full-time caregiver, but also because we so value her perspective as the loved one of someone living with chronic invisible illness. Both women have gained and lost so much in the experience of living with and striving through chronic illness, and have a wealth of knowledge to share. Jaelin is a happy, social individual, committed to a number of causes – but chief in her interests is LGBTQIA inclusion and awareness (she and her sister McKenna founded the Yucaipa Rainbow Coalition), as well as chronic illness activism (especially with groups like Fight Like A Warrior). In their journeys, mother and daughter have learned what it means to be an advocate – both for oneself and for others – and sat down with Lauren to enlighten listeners with their message of hope, love, and strength. 

Dr. Rashmi Mullur is an integrative endocrinologist leading practices at UCLA and the VA in Los Angeles. She received her medical degree from University of Texas Southwestern Medical Center, and completed her internal medicine and chief residency at Barnes-Jewish Hospital/Washington University School of Medicine, St. Louis. After this, she completed a fellowship in Endocrinology at the VA-Cedars Sinai Medical Center. A certified yoga instructor registered with the International Alliance for Yoga Therapists (IAYT), she is also a board-certified integrative medicine practitioner (American Board of Integrative Medicine), in addition to completing a research and medicine education fellowship. Dr. Mullur is also part of the David Geffen School of Medicine at UCLA curricular faculty, and chairs a course in endocrinology for first-year medical students, as well as leading the UCLA Health Integrative Medicine Collaborative as its education director. Her goal is to educate up-and-coming doctors in integrative medicine as they enter their training, with a focus on experiential learning. She has pioneered several clinical programs using integrative medicine techniques for the management of chronic disease, and she is recognized as a national leader on the use of integrative medicine for patients with diabetes. Given her background, the focus of her practice is in fully integrating Eastern and Western approaches to clinical care, using teachings from yoga, TCM, Ayurveda, and other modalities to truly connect mind and body in the treatment of endocrine disorders such as diabetes, thyroid disorders, stress management, and fatigue – often referring to acupuncturists, movement specialists, and other practitioners to complement her work. As a patient, Lauren can attest to the effectiveness of Dr. Mullur’s approach. One stunning fact: she takes a longitudinal history of each new patient, and has tailored her schedule to spend as much time with them as they need for appropriate treatment. So, basically: the needle in the proverbial healthcare haystack, and Lauren’s medical hero. 

Anisha Gangotra is an inclusive dance instructor living in the UK, and the sister of former guest Trishna Bharadia. In 2008, at the age of 24, she was diagnosed with ulcerative colitis (UC) – an autoimmune condition that attacks the gut. Shortly after, in 2011, she was a victim in a high-speed car accident; during her long recovery and rehabilitation, she was additionally diagnosed with PTSD, depression, and anxiety. For the next 4-5 years, she sought to access mental health treatments such as CBT (cognitive behavioral therapy), EMDR (eye movement desensitization and reprocessing, covered in Episode 11 with Michele Sherman MFT), and others – but in some cases, it took years for her to receive proper access to these treatments. In a total career shift inspired by her own experience, she also began working full-time to support people with mental health issues in the workplace – be they seeking work, navigating discrimination, or considering leaves of absence. In 2015, she began to teach inclusive dance classes – designed for people with disabilities/long term conditions, as well as for those without – partly for her own mental and physical health, but also to provide a safe space for others with similar conditions to rediscover freedom and joy in their bodies – in a safe space. 

Devri Velazquez – or, as she has aptly proclaimed herself, “pretty, sick. chick” – is a content creator, writer, editor, speaker, model, and advocate for chronic illness. She lives with a very rare form of vasculitis called Takayasu’s Arteritis. Diagnosed in 2011, she was told by doctors that she might not live to see 30 – and she turned 30 last month! Not only has she defied the odds with her physical health, but her mental health has played a big role in her ongoing wellness and healing. Since diagnosis, she has worked tirelessly to advocate for awareness of this rare disease, connecting with individuals all over the world living with similar conditions. She sat down with Lauren to talk about what motivates her, how she approaches her mindset, and why hard boundaries in her relationships have kept her in good stead. We also touch on gender, ethnicity, and sexual identity as they apply to her medical experience. 

Chris Armstrong, PhD was first introduced to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) through research into metabolomics at the University of Melbourne, Australia. As he delved deeper into his work, he discovered its connection to ME/CFS patients, and empathized so much with their plight – and the lack of resources, funding, and research available to both patients and clinicians – that he made it his mission to continue research in this field in the hope of finding a cure. Since publishing his first ME/CFS metabolomics study in 2015, he has continued research into the disease, spurred on by patients whose stories have moved him. As the Open Medicine Foundation’s Science Liaison, Chris works on collaborative studies with their partner organizations and helps to translate scientific language for the public. He is also a Visiting Scholar at Stanford University. 

Nitika Chopra is, in her own words, “a woman on a mission to inspire radical self-love.” Her goal is not only to show us how to fall in love with ourselves, but, like her, to “learn to thrive with a chronic illness.” If she’s one thing: she’s real. Nitika shares the raw pain she had to grow through in order to find that self-love she speaks so passionately about. Diagnosed with debilitating psoriasis at 10, she was further diagnosed with psoriatic arthritis – which at that point had taken over most of her body’s joints – at 19. She lived for years with unsightly sores from head to toe, unable to move without severe pain. She lived through, as she tells us in this episode, more than 15 years of pain, insecurity, confusion, and depression. In that darkness, she made a decision: “to be more committed to [her] happiness than [to her] suffering.” By 2010, she’d mastered the concepts of self-love and self-care and founded lifestyle magazine Bella Life; a few years later, her now-glowing skin came center-stage as she became the host of Naturally Beautiful, a talk show that aired on the holistic lifestyle channel Z Living. Most recently, she became a luxury skincare spokesperson and regular expert on QVC. She’s also the host of her own podcast, The Point of Pain, which explores how we can navigate pain in our lives – both literally and figuratively – with grace and heart. This week, she launches perhaps the most heart-centered of her projects to-date: the first annual Chronicon, in partnership with Healthline. For one day in New York City, she and numerous chronic illness advocates and experts will join panels (in an ADA-compliant space!) to talk about life with chronic illness: the good, the bad, and the ugly. She prides herself on being able to truthfully feel the fear – and do it anyway. And do it she does! We are so excited to hold space for this inspirational, real woman – who pulls no punches. Uninvisible Pod crew: meet Nitika! (P.S. We know you’re all wondering – and no, she’s not related to Deepak or Priyanka!) 

Clare Stafford is one of Lauren’s oldest friends. Hailing from Melbourne, Australia (by way of Irish-born parents), Clare has built a career as a social justice advocate and lawyer. Having worked in refugee camps in Greece and campaigned for indigenous rights in Australia, her focus has always been on immigration, native rights, gender equality, and climate justice. She is an avid follower of music, traveling the globe to attend festivals and visit friends far and wide. In 2017, shortly after turning 33 years old and subsequently losing her mother to lung cancer, Clare herself was diagnosed with cancer in her left breast. She has now survived this cancer twice, and has been told by her Western medical team that a third occurrence would mean she’d be treated as terminal. When she discovered integrative medicine, her doctors laughed (in a good way!) at these claims. She sat down with Lauren in July 2019 to discuss her recent trip to an integrative medicine center run by Cuban doctors in Colombia (Instituto Medico Cubano) – and how the holistic treatments she received there have changed her perspective on cancer – and on chronic illness. 

Ilana Jacqueline is a best-selling author, speaker, patient advocacy strategist, and professional patient advocate. While her background is in PR, her career as a patient advocate started with an early blog, Let’s Feel Better, in 2012, and gave birth to the book Surviving and Thriving with an Invisible Chronic Illness – which was Lauren’s playbook when she first got diagnosed (Ilana has a way of saying it like it is and managing to stay sane and amused that is right up Lauren’s alley). She has a longstanding relationship with Global Genes, where she served as the managing editor of The RARE Daily for five years. She was later appointed the Manager of Patient Advocacy at FDNA, where she developed the Genomics Collaborative program. Most recently, she has joined the boards of RUN (Rare and Undiagnosed Network), HAS (Health Advocacy Summit), and IDA (Invisible Disabilities Association), while also working at WEGO Health and continuing her regular column in IG Living. She has a long career of freelance writing, and has contributed to publications including The Huffington Post, Marie Claire, Everyday Health, Mashable, and The Miami Herald, among others. She speaks at medical, patient, and pharma conferences as well as consulting with companies on how the patient voice can improve the design of healthcare. 

Aditi Juneja is a lawyer, writer, and organizer living with epilepsy. She is the creator and host of Self Care Sundays, a podcast about self-care for communities of color. With past guest T. Sydney Bergeron Mikus, she is also the co-founder of the Invisible Illnesses Support Circle at The Wing in NYC. While at NYU law school, she co-created the Disability Allied Law Students Association (DALSA). In 2017, she also cofounded the Resistance Manual, a nonpartisan organization crowdsourcing content on legislative and policy issues and offering it to the public at a basic reading level in order to make it accessible to all English speakers. This project was created in partnership with StayWoke; as part of it, she also co-created OurStates.org. In 2018, she was selected by Forbes as one of the 30 Under 30 in Law & Policy. She is currently the communications manager at Protect Democracy. In this interview, we talk about what it has been like to manage her seizure disorder throughout her early life and career, and how we can make healthcare more accessible.