Major Pain (2025)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

11/11/2024

Andi and Jesse are married! For their wedding registry they asked their community to donate to an Undiagnosed Disease Fund, with the goal of raising enough money to provide genetic testing for an individual in need. Full genome sequencing can be helpful for individuals with a mystery illness, either to point towards an answer, or rule out upwards of 7,000 diseases in one test. This process was very helpful in Jesse’s own search for a diagnosis, but his insurance would not cover the test. Andi gave Jesse a massive gift by purchasing full genome sequencing for him, and the couple have fantasized about providing this gift to others ever since.

Andi and Jesse created a GoFundMe for their wedding registry, and have been absolutely astonished to already raise over $9,000. This means we can purchase genetic testing for at least 3 people! If you are in need of genetic testing to help diagnose a mystery illness, you can apply now to receive it for free. Email us at [email protected] and tell us a bit about your health journey so far, or send us a DM here on Instagram.

There is a link in our bio to check out the Undiagnosed Disease Fund on GoFundMe. Learn more in the latest episode of Major Pain.

23/10/2024

Living with a chronic health condition is difficult enough, but managing health records, medications and symptom tracking can feel impossible. That’s what the folks at Guava are trying to fix. They have created a free centralized holistic health management tool that integrates with over 50,000 health organizations across the US (including MyChart), top fitness/medical devices and even local weather to bring you personalized insights into your health. Guava allows you to effortlessly track symptoms, mood, medication and activities, pulling data from your hospital records and lab tests for an integrated picture of your health. It features an AI enabled visit prep experience to help you prepare for doctors visits. You can even track your medication, hydration and more with Guava tags. Stick a tag to anything you want to track and tap your phone for instant logging.

In this episode of the Major Pain podcast, we learn about Guava from Isabel Stewart (Head of Product) and Emily von Weise (Head of Marketing). Emily also shares her chronic illness journey with us, and how her experiences have impacted the development of Guava. She lives with the classic trifecta of EDS (Ehlers-Danlos Syndrome), POTS (postural orthostatic tachycardia syndrome) and MCAS (mast cell activation syndrome) along with celiac disease and several tick-borne illnesses. She talks us through the frustrating diagnostic process, where she had to quit working and focus solely on her health. Living through years of medical gaslighting makes her work with Guava feel deeply impactful, allowing her to make life easier for individuals within the chronic illness community.

16/10/2024

Danielle was born a micro preemie at just 25 weeks, weighing only 1 pound 8 ounces. Diagnosed with cerebral palsy, doctors gave her a .5% chance of living a meaningful life. Alongside cerebral palsy, she also lives with POTS and scoliosis, but this has not stopped her from owning a restaurant at the age of 25 and empowering individuals with disabilities. With the support of her family, friends, therapists, and caregivers, Danielle has been able to thrive, turning challenges into opportunities.

Cerebral palsy is a condition that affects motor function, caused by a brain injury before or shortly after birth. In Danielle’s case, all four limbs are affected. She was wheelchair dependent until she was 6 years old, then transitioned to a walker and eventually forearm crutches. Her own journey with disability has led her to create opportunities for others. At her restaurant Pizza Pete’s in the south suburbs of Chicago (which has now opened a second location) she encourages an inclusive and accessible environment for both her employees and customers, while also donating 20% of proceeds to families in need every Tuesday.

In this episode of Major Pain podcast, Danielle emphasizes the importance of gratitude, noting that if she had been born just three years earlier, prior to certain medical advances that impacted her early care, she might not have survived. Additionally, Danielle raises awareness that cerebral palsy exists on a spectrum, which tends to be overlooked in media portrayals of this disease. She has proved the doctors wrong who claimed she would never lead a meaningful life, not only through her personal journey but through the impact she continues to make on her community.

Podcast description by Kait Williams

02/10/2024

Jennifer Weaver is the host of the My Spoonie Sisters podcast, and her history with chronic illness is a storied tale. While most people never have to worry about the 1% chance of side effects from medication, Jen is the person who will develop the rare reaction. That’s exactly how she came to suffer from medically induced pustular psoriasis, living through a horrific year where her skin was basically being burned from the inside out. Of her journey she says, “It feels like my body hates me. There’s something so wrong with me because I have all the reactions. If it’s in the tiny print and it says there’s going to be a 1% chance it somehow ends up being me.”

In this episode of the Major Pain podcast, Jen shares her chronic illness journey so far. She talks us through the frustrating experience of getting diagnosed with rheumatoid arthritis (RA), spending a full year seeing a rheumatologist who provided terrible care. Firing that doctor allowed her to finally find good care and an official diagnosis of seronegative RA, but a whole new set of problems arose while trialing medications to treat her disease. That’s when she discovered she has a rare reaction to TNF inhibitors, and developed pustular psoriasis. Although her journey has been a tumultuous one, she feels it has also made her a better, more compassionate person. She started the My Spoonie Sisters podcast and community at the end of 2021, and finds great joy helping others who live with chronic illness feel less alone.

Watch the episode on YouTube, or listen on your favorite podcast platform.

Major Pain