Major Pain

Major Pain A podcast about chronic illness and disability The Major Pain podcast is a collection of interviews from people living with chronic illness and disability.

Our goal is to spread awareness, empathy and community around experiences often lived through in isolation. Through sharing these stories important themes have become increasingly apparent, including the dangers of medical gaslighting, the importance of self-advocacy and the fact that none of us are in this alone. You can share your thoughts, your story, or inquire about appearing on the show at [email protected].

Hannah is still trying to live her life as any other 22 year old would, dancing with friends, enjoying the outdoors, and...
07/05/2025

Hannah is still trying to live her life as any other 22 year old would, dancing with friends, enjoying the outdoors, and loving the cows on her family farm. She hopes to share this positive view of life with chronic illnesses on her public Instagram page .the.label_0  to help show other young people with challenging diagnosis that joy and a life worth living are still possible.  In this episode of the Major Pain podcast, she took a few minutes to talk to us about her journey with vascular Ehlers-Danlos syndrome from a lake near her home in Tennessee.

Hannah started life as a perfectly healthy kid playing basketball, softball, cheerleading, and getting into trouble on the farm.  Even then she watched her brother struggle with seizures and a difficult road to diagnosis that ended with Chiari malformation and tethered cord syndrome.  When she got a concussion at the age of 13 everything seemed to change, and Hannah was also diagnosed with both Chiari and tethered cord, in addition to vascular Ehlers-Danlos syndrome (VEDS). She would later be diagnosed with postural orthostatic tachycardia syndrome (POTS) and is exploring the possibility that she may have mast cell activation syndrome (MCAS).  Her doctors narrowed in on the vascular form of EDS when she was 16 and began having pain, fever, and illness with her periods which became unpredictable, either missing months at a time or lasting up to a year of continuous bleeding.

After many surgeries to release the Chiari, fuse vertebrae, release the tethered cord, and a difficult decision to have a hysterectomy at age 19 to resolve her constant bleeding, Hannah still would not change a thing.  Though she used to wonder why god would do this to her, she now sees the good that can come from perseverance.  She talks us through her history with VEDS, tells us about her medications and coping mechanisms, as well as how her chronic illness journey has strengthened her faith.  With her long term boyfriend and service dog at her side, Hannah is a resource for other patients going through similar life challenges as she continues to find what her future will bring.

Willemijn lives with a rare condition called visual snow syndrome, or VSS. She sees static in her entire field of vision...
30/04/2025

Willemijn lives with a rare condition called visual snow syndrome, or VSS. She sees static in her entire field of vision, no matter if her eyes are open or closed. This constantly moving static is black and white, similar to that of an old TV. The static itself is only one symptom out of many that Willemijn experiences, including blurred motion, after images and tinnitus, a constant ringing in the ears. She also experiences burning or cold prickling sensations in her body, and a sense of depersonalization. Overall, this is an overwhelming and debilitating constellation of overstimulating sensory experiences that has drastically changed her life.

Willemijn’s journey with VSS started about a year ago, but this was not her first unexplained health crisis. Several years before she had woken up with her legs no longer working, precipitating the need for a wheelchair for the next 6 months. Doctors never figured out why this happened, partially because the problem was worked through in physical therapy while Willemijn waited a year to see a specialist. Her visual snow started when she was about 20 weeks pregnant, and when her son was born she experienced a thyroid issue that eventually turned into Hashimoto’s disease. Dealing with her day to day symptoms has been frustrating enough, but the lack of answers or support from medical professionals has been deeply discouraging.

In this episode of the Major Pain podcast, Willemijn tells us what it’s like to live with visual snow syndrome, and talks us through her medical journey so far. The onset of VSS has felt like she’s in some kind of glitch where she doesn’t feel like herself anymore, which has understandably led to anxiety and depression. Still, Willemijn has hope that researchers will uncover clues about how to treat this mysterious disease in the future. In the meantime, she has learned a great deal by connecting online with others going through similar things. She hopes that by sharing her story she can shed a light on VSS, spreading awareness about the disease itself, and the importance of continued research.

Today we are kicking off the fifth season of Major Pain! Jesse reflects on the past year before we jump into three inter...
21/04/2025

Today we are kicking off the fifth season of Major Pain! Jesse reflects on the past year before we jump into three interviews with previous guests, updating us on their health journeys.

Joey tells us about a surgery to manage his hidradenitis suppurativa, plus updates on his amazing advocacy work.

Colby updates us on a new diagnosis, and discusses how past trauma has influenced their decision to undergo elective surgery.

Angela tells us how breathing problems led to her diagnosis with pulmonary hypertension.

Since being diagnosed with bipolar 1 disorder, Sarah Fox has made it her mission to break down the stigma surrounding me...
06/04/2025

Since being diagnosed with bipolar 1 disorder, Sarah Fox has made it her mission to break down the stigma surrounding mental health. She is the host of the Rough Edges podcast, which provides tools for mental health education and examines the intersection between faith and mental health. Sarah’s faith journey has been an integral part of her bipolar journey, in fact her diagnosis initially triggered a crisis of faith that she has since overcome.

In January of 2021, Sarah experienced a severe manic episode. This involved disruptions in her sleep, incoherent thoughts and psychosis, with both auditory and visual hallucinations. Her memories of this time are hazy, but she does remember feeling a powerful sense of euphoria, like she was on top of the world. As this manic episode increased in intensity Sarah became aggressive, at which point her family decided to have her hospitalized. During her three week stay in the hospital Sarah was diagnosed with bipolar disorder, and the severity of her manic episode qualified her as type 1.

In this episode of the Major Pain podcast, Sarah discusses how her bipolar diagnosis transformed her life, initially turning her world upside down. Her prior knowledge of bipolar had a negative connotation due to poor representation in popular media, and to be diagnosed with this disease triggered not only a crisis of faith but also an identity crisis. She suddenly had to re-contextualize everything she thought about herself, but the resulting transformation has brought her to a place of stability in both her bipolar journey and her faith. Through her mental health advocacy work she endeavors to spread a message of hope, proving it is possible to thrive with bipolar.

Alex Burket believes that his bout with bacterial meningitis in middle school may have saved his life, because it led to...
26/03/2025

Alex Burket believes that his bout with bacterial meningitis in middle school may have saved his life, because it led to the discovery of his type 1 diabetes. Although meningitis resolved in about a month, diabetes would become a constant companion. 17 years later, Alex has learned a tremendous amount about living with this disease, in a journey that has gone from rebellious to transformative.

Alex is the host of the Rise to the Challenge podcast, where he speaks with athletes, CEOs, entrepreneurs, recovering addicts and more, sharing stories of overcoming obstacles. Facing challenges is Alex’s passion, he enjoys pushing himself out of his comfort zone to see what he can achieve. Doing so while balancing type 1 diabetes requires a level of discipline that Alex worked hard to cultivate.

In this episode of the Major Pain podcast, Alex discusses his history with type 1 diabetes. We discuss what it was like to be diagnosed at such a young age, including the feeling of isolation this brought about. He talks us through his rebellious phase, where he pushed his body to the limit and fought against his diagnosis. He also discusses his transformation in the last 6 or 7 years, where a renewed focus on nutrition and fitness changed his body and mind for the better, developing the discipline to live harmoniously with his disease.

Pallavi’s journey through chronic pain began with physical agony, but led to spiritual transformation. She grew up in In...
16/03/2025

Pallavi’s journey through chronic pain began with physical agony, but led to spiritual transformation. She grew up in India with a deep love of dance that had turned into a passionate career in her early 20s. On a fateful day about 6 months after her marriage in 2011, she fell from her bike while racing her cousins and went sliding down the road. This accident ended her dance career, leaving her in extreme pain that did not improve with time, baffling her doctors. Pallavi’s situation expanded far beyond chronic pain – it became mysteriously difficult for her to use the right side of her body. She struggled to sleep, get out of bed and feed herself. Doctors had no idea how to help her, prescribing a large cocktail of medications out of desperation.

Pallavi’s turning point came when she overheard a doctor saying that she wasn’t actually in pain, and just wanted attention. This made her extremely angry, and she vowed to find a way to overcome this mysterious affliction. Pallavi began to learn everything she could about energy healing and holistic wellness. She soon realized that the more she meditated, the less pain she was in. After around 3.5 months of meditation, she was pain free.

On this episode of the Major Pain podcast, Pallavi shares how her harrowing journey with chronic pain has fueled her new purpose in life: to lead people with chronic pain and chronic illness through holistic wellness practices. She tells us about getting diagnosed with fibromyalgia several years after her accident, finally having a name to put to her mysterious pain. She also discusses the deep spiritual journey that resulted from this experience, learning to listen to ancient wisdom that helped transform her life. She now provides a healing space as a meditation, yoga and energy healing practitioner.

The normal gestation period for birth is 40 weeks, and anything under 37 weeks is considered premature or preterm birth....
12/03/2025

The normal gestation period for birth is 40 weeks, and anything under 37 weeks is considered premature or preterm birth. Preeti experienced a premature birth at 24 weeks in 1989, weighing only 2 pounds, an astonishingly early birth that she feels incredibly lucky to have survived. Premature birth can impact health in a variety of ways over the course of someone’s life, including neurodevelopmental challenges, cardiovascular disease, congestive heart failure, high blood pressure, chronic kidney disease and more. These impacts can present throughout the course of someone’s lifespan, often unpredictably.

In this episode of the Major Pain podcast, Preeti discusses not only her personal history with preterm birth, but also the wide-ranging spectrum of how premature birth can impact someone’s life. She also shares the incredible steps that were taken to keep her alive at birth in 1989. So far, the majority of Preeti’s challenges have been neurodevelopmental. She lives with ADHD and anxiety, as well as mild issues with executive functioning, visual-spatial learning and focusing. Luckily she has not experienced any issues with her organs so far, but remains constantly aware that there is potential for these issues to develop at any point in her life. As an adult she has made it her mission to educate other people about premature birth, to help both patients and their parents learn about how their lives may be impacted.



Danni Hertel (aka ) has turned her passion for baking into a full time career. She is known for putting a fresh spin on ...
29/01/2025

Danni Hertel (aka ) has turned her passion for baking into a full time career. She is known for putting a fresh spin on classic treats. Her recipes have been featured in the Houston Chronicle, she has worked with dozens of celebrities and she has even won Best Holiday Cookie for the Houston area in 2021. While she enjoys bringing tasty treats to the masses, behind the scenes not everything is so sweet. For almost 5 years she has been dealing with intense abdominal pain, which is set off almost every time she eats.

Danni has been through every test her doctors can think of, but her pain remains a mystery. She experiences early satiety (getting full quickly when eating), bloating, nausea and sharp shooting pains that often leave her curled up in agony. This condition seems to be flared not only by eating, but by external stress and anxiety. Doctors often don’t take her complaints seriously, blame it on anxiety, or even on the fact that she is a woman. She says, “A young woman walking into a hospital or ER complaining of stomach pains, the first thing they always think of, oh, it’s your cycle, you’re pregnant … and so I’ve been tested for pregnancy a million times because that’s what they think it is.”

In this episode of the Major Pain podcast, Danni describes her quest to diagnose her medical mystery. She shares the mental toll her journey has taken, including the development of an avoidant eating disorder. Since she experiences pain so often after eating, she struggles to eat at all. She tells us about the tests she has undergone, the potential diagnoses her doctors have discussed and the immense impact her symptoms have had on her life. Even though this situation has been extremely difficult, it has also prompted intense personal growth. She shares the things she’s learned, the ways she’s changed and how this challenge has helped her become a better person.

After hearing Danni’s story, please reach out to [email protected] if you have any ideas of what might be causing her symptoms.



Looking back through the history of her medical challenges, it becomes painfully obvious that Tayler was born with the c...
15/01/2025

Looking back through the history of her medical challenges, it becomes painfully obvious that Tayler was born with the connective tissue disease EDS (Ehlers-Danlos Syndrome). Unfortunately, the lack of quality healthcare in her youth prevented this diagnosis for many years. She struggled physically throughout childhood, often being accused of laziness or being unwilling to participate, when in fact physical activity was more difficult, painful and dangerous for her than for her peers. Medical challenges often made her stand out, like her time spent in a back brace for scoliosis or her runaway heart rate in health class that led to a POTS diagnosis (postural orthostatic tachycardia syndrome) at 15 years old. Her EDS was constantly manifesting, screaming to be acknowledged, but doctor after doctor refused to take Tayler’s complaints seriously.

In this episode of the Major Pain podcast Tayler shares her remarkable health journey with us, eventually coalescing around her EDS diagnosis. The tumultuous road she has traveled includes many unexpected diagnostic detours, like septic arthritis, congenital muscular torticollis, visceroptosis, MALS and more, all conditions she teaches us about during this conversation. In the past year her GI issues have necessitated transitioning to an ostomy bag, and the ileostomy surgery led to unexpected complications that she will also share. Tayler found a creative outlet in crafting custom ostomy bags (found on her Etsy store). Since her ostomy bag gave her a second chance at living more fully, she likes to craft these bags out of second-hand materials found at thrift stores. Her experiences have given her a passion for helping others, working as a sign language interpreter and disability advocate.

After recovering from CFS (chronic fatigue syndrome aka myalgic encephalomyelitis) Miguel Bautista felt like he had a ne...
01/01/2025

After recovering from CFS (chronic fatigue syndrome aka myalgic encephalomyelitis) Miguel Bautista felt like he had a new lease on life. At the height of his illness he was unable to walk or sit up in bed and needed meals blended so he could drink them. Now he is running marathons, traveling, spending quality time with loved ones and running a successful CFS recovery program. His journey through chronic illness was extremely tumultuous, but led to several profound realizations about how he was living his life. It also re-defined his life’s purpose moving forward.

In this episode of the Major Pain podcast, Miguel walks us through his incredible journey through the depths of chronic illness and back. Realizing his immune system was overactive was a turning point in his journey. He elected admittance into in-patient psychiatric care to work on calming his hypersensitive nervous system. Through the use of medication and therapy, he was back on his feet within a month, experiencing long-lasting recovery.

After getting out of the hospital, Miguel began sharing his experience online. He quickly discovered the methods he had used to recover and the lessons he learned about neuroplasticity could be applied to other people. He now operates CFS Recovery, offering both free and paid coaching to individuals living through similar circumstances. He tells us about the three fundamental principals of his recovery program: determining your individual stress threshold, understanding the base problem of a hyperactive nervous system, and recognizing that your success will be dictated by how you respond to flaring symptoms.

When Amee was first diagnosed with epilepsy at 8 years old, one simple medication was able to control her disease. This ...
18/12/2024

When Amee was first diagnosed with epilepsy at 8 years old, one simple medication was able to control her disease. This made it easy to hide her illness from almost everyone in her life, which remained the case for about 35 years. Of course there were complications along the way. When looking to start a family she faced the potential that this medication could cause birth defects, but with the help of an understanding doctor Amee was able to have two healthy children. It wasn’t until Amee was in her mid 40s that her relationship with epilepsy underwent a profound shift. Her symptoms worsened significantly – the frequency of her seizures went up dramatically. Keeping her disease a secret was no longer possible.

Amee needed to be electively hospitalized to trigger seizures and scan for their location of origin in her brain, and she knew her disease could no longer remain secret. Of the decision to go public she says, “I could do two things. I could sit and feel sorry for myself…and fall into the societal norms, or I could use it as a tool of education and empowerment. And I chose the second route.” She started advocating publicly on social media on behalf of the epilepsy community, finally opening up about what she was going through. Friends that had known her for decades had absolutely no idea that Amee had this chronic condition. The outpouring of love and support she experienced was deeply cathartic.

In this episode of the Major Pain podcast, Amee discusses her complicated journey with epilepsy and the decision to stop hiding her disease. She shares the challenges of being a mother living with an unpredictable chronic illness. She also discusses the power of turning to public advocacy, and how it has precipitated intense emotional healing.

In 1982 Steve Lovelace was pinned by a felled tree that barber chaired, meaning it split lengthwise while being cut down...
04/12/2024

In 1982 Steve Lovelace was pinned by a felled tree that barber chaired, meaning it split lengthwise while being cut down. His injuries were severe – his face and several vertebrae were crushed. Steve found himself instantly paralyzed and stuck under this tree, where he would remain for hours while waiting for help. Eventually he was taken to the hospital, where he would begin the months-long recovery process. Miraculously, Steve would eventually regain full functionality, but the ramifications of this injury would continue to reveal themselves for years to come.

In this episode of the Major Pain podcast, Steve talks us through the many twists and turns of the journey he has been on since being crushed by a tree. He discusses developing arachnoiditis, an intractable pain condition involving chronic inflammation of the arachnoid tissue that surrounds the spinal cord, developed after a surgery to remove hardware from his low back. This has led to the slow progression of paralysis below the waist, on top of a second condition involving nerve damage of the lower back called cauda equina syndrome. Although Steve’s pain is extreme it hasn’t stopped him from making sports history, becoming the 2nd disabled person to complete a triathlon. He discusses the mindset that allows him to overcome adversity, saying you can either succumb to it or rise above it. Helping others to face adversity has become his life’s passion, a life filled with joy and gratitude in spite of chronic pain.

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