Major Pain

How much movement do you need to feel better? Movement has been part of DK’s life since childhood, but so have anxiety and recurring pain. After years in healthcare management consulting, she chose to leave the demands of corporate life, for the sake of her physical and emotional wellbeing. DK dove into Pilates, training as an instructor in 2018 and continuing an exploration of movement as more than exercise. At Movement Remedies, her business that is now based in Edinburgh, she helps clients navigate chronic pain, reconnect with their body, and make space for the full range of emotions that comes with movement and being human. That philosophy is echoed in her book, You’re Meant to Move.

DK and Jesse explore the complicated relationship between physical pain, anxiety, stress, and the stories we tell ourselves about our bodies. Looking back at childhood trauma, anxiety, diet culture, and years spent in an adversarial relationship with her body eventually changed how DK understood her symptoms. As her mindset, support system, and relationship with movement improved, so did much of her pain.

For the first time, publicly, DK also opens up about her experience with prescription medication. After experiencing panic attacks in 2017 that became near-daily, she was prescribed benzodiazepines and eventually found herself taking a combination of medications that seemed to make her symptoms worse. She has spent the past 18 months addressing a resulting dependence by slowly tapering her dosage and navigating withdrawal with limited clinical support. She speaks to the ways in which healthcare systems, despite a wealth of research and resources, can fall short when mental health, physical symptoms, and medication effects overlap.

Through it all, movement remains DK’s most reliable tool. Rather than chasing a perfect explanation for every symptom she experiences, she now focuses, and encourages clients to focus, more on what makes life feel meaningful. Her approach asks us to question socially dictated goals, notice what our bodies are communicating, and use our values as a decision-making guide. DK offers a reminder that movement does not have to be punishment, performance, or obligation. It can simply be one way back to yourself.

Learn more about DK and Movement Remedies:  https://movementremedies.org/

Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform.

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
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How do you go beyond enduring pain and turn it instead into a transformative artistic experience? Casey and Elicia are the powerhouse behind Sensory Dimensions, a creative collaborative that recontextualizes experiences of chronic pain and disability through music, movement, projection, and tactile art. Their work asks what happens when pain is pushed beyond the silent tragedy of the clinical setting and given new ways to be seen, heard, and felt.

Both Casey and Elicia came to the project through deeply personal experiences with chronic pain. Elicia has trained as a violinist for more than 20 years. At 17, ankylosing spondylitis forced her to reconsider her artistic future. Years of pain, unsuccessful physical therapy, and medical dismissal eventually led to a diagnosis that brought both relief and fear. Casey’s path through dance was repeatedly disrupted by severe muscle spasms, undiagnosed injuries, and other overlapping symptoms that did not fit neatly into a single diagnosis. Eventually, they were diagnosed with fibromyalgia and hypermobility. Trying to remain in the world of performance while navigating disability pushed them both to explore other avenues to art, including choreography, production, and accessibility work.

In this episode, Jesse speaks with Casey and Elicia about how their connection to someone with a similar experience changed their approach to their work and bodies. Since collaborating on their masters’ thesis, they have built immersive, inclusive performances, and interactive programs like Paint Your Pain. On stage, they turn pain into sensations that everyone can experience, regardless of disability or predilection. Accessibility is embedded from the beginning: for instance, if an audience member cannot see an element, they may be able to hear or touch it instead. 

Through performances like “My Body’s Wake,” Elicia and Casey embrace the unpredictability of disability. They incorporate improvisation that enables them to create a resonant performance every time, even as what their bodies are capable of shifts day to day. For both artists, that shift has changed their definition of chronic pain. Something once private, inconvenient, or shameful has become visible, tangible, and even beautiful. Rather than being the end of the creative process, pain becomes part of the material itself and a catalyst for entirely new ways to create.

Learn more about Sensory Dimensions and their mission to recontextualize chronic pain and disability through art: https://sensorydimensions.godaddysites.com/

Follow Sensory Dimensions on Instagram: https://www.instagram.com/sensorydimensions/

Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform.

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1

SOCIAL MEDIA
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YOUTUBE: https://www.youtube.com/@MajorPainPodcast
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When your body is a medical stomping ground, how do you transform it back into a vessel deserving of joy and pleasure? For Melissa—a Seattle-based mental health counsellor—this question arises from a lifelong exploration filled with relapses, flare-ups, malnutrition, and self-discovery. With compassion and confidence, she shares the story of her rare major pain: neuronal dysplasia.

At just two days old, Melissa underwent her first surgery. Faced with the news that, if their daughter survived, she would likely be deaf, blind, and mute, her parents spent years traveling in search of answers. In elementary school, Melissa’s disease was finally officially diagnosed: neuronal dysplasia is a rare condition impacting the nerves that control intestinal function. After countless surgeries for true and pseudo-bowel obstructions, Melissa has no large intestine and only a partial small intestine. Years of malnutrition and dehydration from her body’s inability to absorb nutrients means that today Melissa receives total parenteral nutrition (TPN) through an IV directly into her bloodstream.

Anyone who has had to abstain from food for any length of time knows what hunger feels like. Because Melissa’s stomach is always empty, she feels these same cues and pangs, but decades of careful experimentation have taught her that eating anything orally results in painful and debilitating symptoms or even surgery. As such, she seeks out alternatives to the pleasurable sensations most people derive from food. From scented candles to cozy clothes and bodywork practices, Melissa provides her body with other affirmations of its innate need for physical pleasure.

The rifts wrought from decades of internalized ableism drove Melissa to hide her disease and work herself too hard to “make up” for her perceived deficits. Ultimately, this resulted in another diagnosis: severe autonomic nervous system dysfunction. She shares what she went through during what she considers the hardest part of her experience and how she worked—and is working still—to shift the mindset that led her there and rejoin all parts of herself into one full, proud human worthy of love, and success, and pleasure.

Shed light on the disconnection of chronic illness and how we begin to heal:

Learn more about the Seattle-based Center for Chronic Illness: https://www.thecenterforchronicillness.org/

Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform.

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1

SOCIAL MEDIA
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AFFILIATE LINKS
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What does “body positivity” mean to you? To Kelvin Davis, it began as a gap in the market. Women’s clothing advertising was leaning, more and more, into diversity in their models, while menswear seemed content to maintain the status quo of ultra-ripped or ultra-thin. Kelvin launched his body-positive menswear blog, Notoriously Dapper, to address this lack in the fashion industry. Since then, he has published two books and modeled for big names, including Lululemon and Gap. When his Type II Diabetes diagnosis came in 2021, Kelvin had a new crossroads to face: the intersection between loving his body and initiating positive changes for the sake of his health. 

In this episode of Major Pain, Jesse and Kelvin discuss the mechanisms and symptoms of this challenging disease and the medication and lifestyle change approaches that can improve its outcomes. Since enrolling in a diabetes education course, Kelvin has a strong grasp of what his symptoms—like high A1C levels and nerve pain in his hands and feet—mean for his well-being and longevity. Today, he manages his condition with movement and nutrition habits, but the  process wasn’t easy. Particularly in Black communities, where access to health care, food, and education is all too often scarce, recognizing and acting on the healthier choices can be daunting and expensive.

With a heartfelt combination of tough love and empathy, Kelvin discusses the importance of “choosing hard now and easy later” rather than “easy now and hard later,” and how this tradeoff plays into his new book, “Be a Good Man, Not a Nice Guy.” Body positivity must go beyond just accepting and showcasing larger bodies. Kelvin calls for taking accountability for your shortcomings and ownership in the pursuit of long-term health. For the sake of the future—his own and that of his two young daughters—he’s living that journey every day. 

Learn more about Kelvin and Notoriously Dapper: https://notoriouslydapper.com/ 

Buy Kelvin’s book, Be a Good Man, Not a Nice Guy: https://bookshop.org/p/books/be-a-good-man-not-a-nice-guy-a-guide-to-true-masculinity-kelvin-davis/923e9e4fd6fcc492

Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform.

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1

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How do you live with the ever-looming uncertainty of being a gene carrier for a fatal disease? Amyotrophic lateral sclerosis—better known as ALS or Lou Gehrig’s disease—was long believed not to be genetic. Today, however, research shows that 10-15% of cases are linked to the mutation of various genes. The journey of potential future illness is one Mindy Uhrlaub has navigated since 2018, when she learned that she carries the C9OF72 genetic mutation.

Since losing her grandfather and then her mother to ALS, Mindy has navigated the precariousness of questioning every symptom she develops, the hard knowledge that her children could also be carriers, and the decisions that come with any life-changing diagnosis: how will this knowledge impact my approach to the present and the future? In Mindy’s case, it has led her to advocacy and authorship. She is a founder of the End the Legacy community for carriers of ALS and FTD (frontotemporal degeneration) and the author of the Amazon bestseller, “Last Nerve: A Memoir of Illness and the Endurance of Family.” 

Everyone with chronic illness or the genetic potential to develop it must select a unique path. Mindy has chosen to immerse herself in the promise the future holds. She takes every preventative step available to her, including avoiding chemical exposure and inflammatory foods and taking an ALS drug prophylactically. Through End the Legacy, she and other community members pursue policy change and education through webinars and summits. She participates in numerous studies and shares the struggle of facing down the inevitable emotional triggers. For Mindy, this approach is not about fearlessness but about devoting her time, and her heart, to the life-affirming aspects of her unpredictable situation.

Learn more about End the Legacy, a non-profit org for genetic carriers of ALS and FTD: https://www.endthelegacy.org/

Buy “Last Nerve: A Memoir of Illness and the Endurance of Family”: https://www.mindyuhrlaub.com/last-nerve

Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform.

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1

SOCIAL MEDIA
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Pointing to Edward’s first symptom of Relapse–Remitting MS is tricky. From anxiety in his 20s, to poor sleep and numb hands, to back pain and difficulty walking, the road to diagnosis has been rocky. When he finally received confirmation—in the form of a terrifying MRI showing countless lesions on his brain and spine—Edward was a new father in his early 30s. Coming to terms with a lifelong condition that presents differently for everyone was a process that has slowly shifted his outlook on both his past and his future.

In this episode, we speak with Edward about what his journey through symptoms and diagnosis looked like, and reflect on how facing down a debilitating illness can change your outlook on life if you let it. A musician from a young age, today Edward is exploring live performance with his solo project, Green Plastic Whistle, and facing an aversion to fame that derailed some previous opportunities. As he puts it, being told you have an unpredictable disease, that has the potential to impact anything from bladder function to your ability to see, really puts fear into perspective.

With cautious optimism and a balanced take on the pros and cons of the medical system, Edward and Jesse delve into how you envision your future when you don’t know what your health will hold. They explore the promising remyelination medications that have the MS community abuzz and what it’s like to start a family in the midst of disease progression. Edward’s experience with Multiple Sclerosis has given him a new perspective on how we prioritize our lives and what’s possible when you begin to face the future without fear.

Learn more about Edward’s solo project, Green Plastic Whistle:  https://www.instagram.com/greenplasticwhistle/ 

Listen to Green Plastic Whistle on Spotify: https://open.spotify.com/user/0b6gv1y0qrwlp4bp3ztmusnsa?si=d557f3eb1a0947c2

Watch the episode on YouTube or Spotify, listen here on our website or on your favorite podcast platform.

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1

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Katie Brennan’s experience with Long COVID began in the earliest days of the pandemic, while she was working with the UK’s National Health Service on data-driven policy changes to improve care for patients. Though her experience with the acute phase was relatively minor, instead of steadily recovering, she developed a range of ongoing symptoms—difficulty breathing, sudden heart rate spikes, dilated pupils, fatigue, brain fog, and difficulty focusing. Although she was still functional enough to work, everything felt harder, and she no longer felt like herself. Eventually, she realized she had Long COVID.

Navigating the push–crash cycle is common for many people with chronic illness: Katie would push herself too hard, frustrated by what her body could no longer handle, then crash and face hours or days of exhaustion and other symptoms as she recovered. A second COVID infection eroded what gains she had made. Recognizing the need to try something new, Katie attended a fitness class run by former biathlon Olympian and world champion Andrea Henkel Burke. Andrea’s combination of gentle but purposeful movement and various nervous system regulation techniques gave her participants small, tangible ways to control the body’s shift out of near-constant fight-or-flight into essential rest-and-repair.  

Together, Katie and Andrea founded ThriveNinety, which aids people with Long COVID and other infection-induced conditions by translating science into simple, practical tools that help restore how their bodies function and help them rebuild capacity and performance. Their program provides movement and other sensory inputs that are accessible for anyone, wherever they’re at in their illness recovery or maintenance. They also guide participants through nutritional changes known to have a positive effect, such as anti-inflammatory diets. Throughout her journey, Katie has discovered the phenomenal impact of listening to her body’s cues and making proactive adjustments that enable her to live a healthy, happy, active life with Long COVID. ThriveNinety shows others how they, too, can improve and even thrive in the face of long-term illness.

Learn more about ThriveNinety’s programs and mission: https://www.thriveninety.com/ 

Buy the book, Recovery Kitchen: https://www.thriveninety.com/recovery-kitchen

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
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NEURAHEALTH: https://www.neurahealth.co/majorpain

Today we kick off the sixth season of Major Pain by catching up with previous guests Danni, Courtney, Joan and Kaitlyn.

Danni is a baker who was risking extreme pain every time she would eat, and doctors had no idea why. She returns to the show with a huge update: she finally has a diagnosis! She tells us how a pocket of fluid around her heart and shortness of breath finally triggered doctors to take her seriously, opening a diagnostic pathway that has resulted in treatment and answers. Listen to her original episode here: https://majorpainpodcast.com/every-time-this-baker-eats-she-risks-intense-abdominal-pain/

Courtney used to think of herself as a hot potato patient, being passed from specialist to specialist in search of a diagnosis for her mystery illness. She returns to the show with a new diagnosis of Yao syndrome and new treatment plan, and is even seeing the doctor her disease is named for! Listen to her original episode here: https://majorpainpodcast.com/the-infuriating-contradictions-of-undiagnosed-illness/

Joan lives with a complex and frustrating form of GERD that has prevented her from lying flat for the past 5 years. She returns to the show having recently undergone surgery called toupet fundoplication, aimed at managing her symptoms. She describes the surgery and the outcome, discussing whether she feels it was a worthwhile procedure. Listen to her original episode here: https://majorpainpodcast.com/joan-of-heart-from-pedal-playhouse-on-her-complex-medical-journey/

Kaitlyn originally appeared on the show as a recent college graduate who had been diagnosed with 14 chronic illnesses. She returns with an additional diagnosis and a new outlook on life. Listen to her original episode here: https://majorpainpodcast.com/kaitlyn-tells-us-about-living-with-14-chronic-illnesses/

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
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Justin Goodman is on a mission with his organization Project 55: to educate, equip and empower the 55% of adults with mental health struggles that aren’t getting the care they need. His journey to this mission was a tumultuous one, in which he has overcome addiction, learned to manage Bipolar II, and faced the lifelong challenge of Scheuermann’s disease. Justin is now focused on helping others in crisis, having developed a deep sense of gratitude for the lessons he has learned along the way.

In this episode of the Major Pain podcast, we sit down with Justin to hear the incredible story of everything he has overcome, and how it inspired the founding of Project 55. As a teenager he developed Scheuermann’s disease, a skeletal disorder characterized by uneven growth of the vertebrae, leading to a forward curvature of the spine known as kyphosis. At first it was assumed he was just having growing pains, but as his disease rapidly progressed it began to restrict every aspect of his life. By the time it was determined he was actually experiencing Scheuermann’s disease he was given two options: manage the pain with opioids, or undergo extreme surgery. He chose prescription pain management. Since this was in the time before narcotics were not closely monitored, he soon developed a dangerous dependence. If not for an intervention from his closest friends, he would not have survived.

Justin now manages the pain from Scheuermann’s disease using a variety of alternative techniques, including conditioning his lower back, mobility work and staying away from inflammatory foods. He has also found relief from a manual therapy called rolfing, in which the rigid fascia around the muscles is ground down to make it malleable. Justin is an avid golfer, and although Scheuermann’s disease initially took him away from the sport, he is now able to participate again due to the success of his disease management. Justin also discusses his journey with Bipolar II, and how mental health struggles inspired him to create Project 55. As a passionate advocate for others in need, Justin has translated his own struggles into a powerful platform for change.

Learn more about Project 55 on their website: https://project55.org/

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
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As a baby, Sarah didn’t know that her diagnosis with asthma would be the first in a long list of diagnoses that would eventually grow to over twenty.  Today she manages these conditions with the help of her husband Dan and cat Daisy.  She juggles her self care with working as a fundraiser for a charity organization and screening films for the South by Southwest film festival.  When not working, she finds joyful movement as a ballroom dancer.

In this episode of the Major Pain podcast, Jesse talks with Sarah about her health journey, including several illnesses we have never discussed on the show before.  The first is exercise induced laryngeal obstruction (EILO), an asthma like condition involving the vocal chords closing, which prevents patients from bringing in air properly during intense physical activity.  The second is lichen sclerosus, a skin condition causing discolored and thin skin.  Due to the sensitive and personal nature of this condition it can be extremely hard to discuss, making first-hand information scarce. Other topics of discussion include central auditory processing disorder, making it difficult to understand words spoken in a noisy or distracting environment, and managing neurodivergence on top of multiple physical conditions.

Sarah is continuing to work at being joyfully disabled. She hopes to show others that with a little accommodation you can live a full life with chronic illness.  She wants others to take the advice she has the most trouble taking herself, to be compassionate to yourself, and know that gratitude is not a competition.

PODCAST LINKS
WEBSITE: https://majorpainpodcast.com
EMAIL: [email protected]
SUBSCRIBE: https://majorpainpodcast.com/subscribe
SPOTIFY: https://open.spotify.com/show/5NDoD07WJmICdfdRKq0TyN
APPLE PODCASTS: https://podcasts.apple.com/us/podcast/major-pain/id1562947550?mt=2&ls=1

SOCIAL MEDIA
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