Nancy Muir’s diagnosis journey has been more difficult than any marathon she has ever run. During her 24th marathon, Nancy began experiencing hip pain that concerned her enough to seek medical care. She was diagnosed with hip dysplasia, a condition where the hip socket doesn’t fully form or cover the head of the femur.  Nancy was shocked to receive this diagnosis in her 30s, especially since she works as a pediatric physical therapist and had only encountered hip dysplasia in children.

In this episode of the Major Pain podcast, Nancy shares her knowledge of hip dysplasia from a patient and physical therapist perspective. After her diagnosis, she quickly discovered that hip dysplasia intervention is much more challenging in adults than in children. She initially had a labral repair and periacetabular osteotomies (PAO), which involved making cuts in the pelvis. Although this surgery went well, it began a chain of events that required over a dozen surgeries and monopolized a decade of Nancy's life. She has had femoral osteotomies, reconstruction of her labrum using cadaver labrum, L5/S1 spinal fusion, and even circled back around to redoing her initial pelvic osteotomies.

Hip dysplasia challenged Nancy to grow and develop in ways that she never expected. While putting her passion for running on hold to recover from surgery after surgery, she felt like she lost a part of her identity. However, this led her to re-examine and redefine her sense of self, bringing new perspective to her work as a pediatric physical therapist. Nancy's experience with hip dysplasia inspired her to create a patient driven organization called Miles4Hips that educates patients and families about hip conditions and treatment options, and aims to bring the hip community together through meaningful movement. Nancy doesn’t allow hip dysplasia to be a sentence for a lack of movement. Rather, she continues to make strides to overcome in the face of adversity.

Check out Miles4Hips on their website: https://miles4hips.org/

Numbers never made sense to Michelle. She would struggle to follow the steps in a math problem, could not tell time from the face of a clock and could not memorize her multiplication tables. At an early age she was diagnosed as having a learning disability, eventually identified as dyscalculia. This is a condition in which the brain is not wired to process numbers, making it extremely difficult to learn math.

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In this clip, Michelle describes dyscalculia and how it affects her life.

In this episode of the Major Pain podcast, Michelle describes what living with dyscalculia is like while also recounting the challenges of growing up with a little known and poorly understood learning disability. Many aspects of adult life depend on numbers, such as grocery shopping, budgeting, driving and more. All of these activities present unique challenges for Michelle, but over the years she has developed coping mechanisms and adaptations to get by. She has also been diagnosed with visual perception issues and limited hand dexterity. As she puts it, "My brain is just wired differently. So there's just certain things that I can't do, or I need to find a different way to do them."

Growing up with dyscalculia was difficult in many ways. Michelle was bullied throughout school, mocked for her inability to learn math, told she wasn't smart and assured she would never graduate college. Although Michelle's intelligence manifested in many other ways (including her passion for writing), there were still times when the relentless bullying made her feel hopeless. However, Michelle eventually proved her detractors wrong by graduating college and becoming a published writer, as well as becoming a paraeducator to help the next generation of children with learning disabilities to flourish. In this podcast interview she shares tips for navigating the world with dyscalculia, discusses the importance of disability accommodations and helps spread awareness of her learning disability.

Check out Michelle's writing, photography and more on her website: https://www.mrsmichellesmission.com/

This week Kevin returns to the Major Pain podcast to catch us up on his health journey. The big news is that he was recently diagnosed with Ménière's disease, adding one more diagnosis to his already long list. He was also finally approved for disability, and he discusses this process with our host Jesse who also recently won his disability case. They share valuable insights for anyone applying for disability benefits. Kevin also shares how he almost lost an eye due to severe inflammation, and has made huge progress integrating his bipolar diagnosis into his life.

Check out Kevin's original episode here: https://majorpainpodcast.com/a-diagnosis-from-every-category-ankylosing-spondylitis-vestibular-migraines-bipolar-disorder-and-more/

While AK’s peers were shopping for prom dresses and applying to college, she spent senior year self-advocating and undergoing hospitalizations. AK had been diagnosed with juvenile arthritis at 12 years old after experiencing jaw and ankle pain. Subsequently, the flares became increasingly systemic with daily spiking fevers. AK shares how difficult it was for her to communicate to doctors what she was feeling at a young age. As she learned more about her condition, she eventually received the diagnosis of systemic juvenile idiopathic arthritis (SJA), also known as Still’s disease, which causes high spiking fevers, organ inflammation, joint pain, and rashes.

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In this clip, AK describes juvenile idiopathic arthritis, AKA Still's disease.

AK details her diagnosis journey and how her symptoms worsened during high school. She shares her experience with infusions, using a wheelchair due to joint contractures, and surgeries to remove bone fragments. Ultimately, her jaw pain became so severe that she couldn't open her mouth to eat, which led to malnutrition. Further, she was having daily fevers around the same time each day and could hardly get out of bed. As AK grew older, she realized that her doctors were looking at what was on the surface, rather than looking deeper into imaging and why she was experiencing painful symptoms. Through her persistence, she advocated for doctors to find the correct diagnosis and changes in her symptom management. 

In this episode of the Major Pain podcast, AK emphasizes the joy and appreciation she has found through her diagnosis. Just two years ago, AK was at her lowest point in life. However, after studying her condition and advocating for an accurate diagnosis and treatment avenues, she sees how fulfilling life can be. Now, she is living her dream by studying film production and pursuing adaptive skiing. Though there are moments she cannot relive and will undergo joint replacements in the future, AK continues to find beauty in the present.

Donate to AK's GoFundMe to help her purchase a sit-ski rig! https://www.gofundme.com/f/help-alexa-ski-again?member=32197051&sharetype=teams

Check out this interview with our host Jesse on the Grants for Creators Substack! https://www.grantsforcreators.com/p/jesse-mercury?publication_id=708860&post_id=146641097&isFreemail=false&r=1q16dp&triedRedirect=true

A few years ago, Ali DiGiacomo was shocked to discover her face on a Daily Mail article called 'Addicted to being sad: Teenage girls with invisible illnesses - known as 'Spoonies' - post TikToks of themselves crying or in hospital to generate thousands of likes - as experts raise concerns over internet-induced wave of mass anxiety.' Aside from the fact that Ali was not a teenager, they had used her post about self-injecting rheumatoid arthritis medication (which had amassed 15 million views) as proof that spoonies on TikTok were using their illnesses for likes, encouraging each other to lie to doctors to get the diagnoses they wanted and competing to see who was sickest. (We have not linked to the article to avoid driving traffic to this post.) At first, Ali thought the whole thing was a hilarious misappropriation of the truth. That changed when the negative comments started rolling in, disparaging herself and the other chronic illness warriors whose intentions were being defamed.

In this episode of the Major Pain podcast, Ali shares the ups and downs of her chronic illness journey while recounting her reaction to the Daily Mail ordeal. Ali lives with chronic pain from both rheumatoid arthritis and a mysterious nerve pain in her chest, which she describes as "drop to your knees pain" that "feels like a heart attack." At 31 years old, she has now been in chronic pain for about 10 years. Still, she has managed to travel the world and work as a personal trainer. She describes how chronic illness has shaped every aspect of her life, impacting her work, relationships and identity. Sharing her journey on social media was born from the need to connect with people her age going through something similar, and has resulted in a huge community of spoonies lifting each other up in spite of chronic pain.

Find Ali online at https://www.anotherdaywithra.com/

Sunny did not consider her diagnosis as a major pain, but rather a “major inconvenience,” until she realized how affected her daily life was. Since childhood, Sunny battled to stay awake during the day. She experienced sudden waves of drowsiness and her eyelids feeling heavy, which often would not resolve until she went to sleep. Sunny did her best to stay as busy as possible in order to keep alert. Further, other people normalized her symptoms, stating that teenagers are often tired, require extra sleep, and are “checked out.” At one time, Sunny even believed that this was a part of her personality rather than a symptom. However, this condition was affecting Sunny’s participation in social activities, daily life tasks, occasionally her ability to drive safely, and even job interviews. After years of drowsiness, Sunny was diagnosed with hypersomnia: a sleep disorder that causes excessive sleepiness during the day.

Sunny faced a long and cyclical diagnosis journey. As a child, she verbalized her sleepiness to others, but didn't feel believed. Then as a first-year student in college, people observed her excessive sleepiness, and Sunny felt validated. Sunny was growing increasingly frustrated with having tasks to do but needing to sleep more than others. Therefore, she decided to undergo multiple sleep studies, which came back with insignificant findings. When Sunny was 28 years old, she went to a doctor regarding digestive issues. This doctor not only diagnosed her with SIBO (small intestinal bacterial overgrowth), but sent her to a neurologist due to sleep concerns. She underwent another sleep study, and the doctor determined that she required more sleep than an average adult (hypersomnia). Now, Sunny’s symptoms have improved since her diagnosis and initiating a lifestyle plan that improves her quality and quantity of sleep.

In this episode of the Major Pain podcast, Sunny shares the struggle of living in a world where rest is met with resistance. Despite society’s perception of rest and through her personal healing, Sunny has learned the significance of balancing rest and keeping busy. She affirms how having a diagnosis has helped her and others make sense of what she is experiencing, as well as making lifestyle changes to manage her condition and improving sleep hygiene. Sunny shares insights of the importance of advocating for yourself, showing compassion towards yourself, and resting when you need it. Now, Sunny no longer views hypersomnia as a major disruption nor is she constantly fighting to keep her eyes open. Rather, she is succeeding in navigating her daily activities and making space for all life has to offer. 

Check out Sunny's new astrology Substack: https://sunnyroberts.substack.com/

Avery was gearing up for senior year of college when she began to notice painful changes in her body. Her initial symptoms included difficulty sleeping and intense jaw pain. Avery also began to notice growth in her facial features, hands and feet. She thought these changes could be from another growth spurt or from the stress of being a student athlete. Though these changes challenged her self-esteem, especially as a woman in her early 20s, Avery did not realize these symptoms were reasons to consult with a doctor. That is, until her symptoms intensified and the pain in her jaw became unbearable. After three years of symptoms, doctors diagnosed her with acromegaly: a rare disease caused by a tumor on the pituitary gland that pumps out growth hormone.

A self-portrait by podcast guest Avery Toomes

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In this clip, Avery describes acromegaly.

Avery’s health journey was full of misdiagnoses, costly interventions, unnecessary sinus surgeries, and painful splinting for her jaw alignment. Though a doctor ordered a head CT scan, the tumor on the pituitary gland was missed which led to jaw and sinus treatments. These surgeries did not resolve her symptoms, and Avery began to lose hope of ever finding answers.  Eventually, Avery found a cardiologist who listened to her and referred her to an endocrinologist. As a result, an MRI revealed a three-centimeter tumor on the pituitary gland and blood work revealed high hormone levels. The endocrinologist diagnosed her with acromegaly, and after years of constant pain, doctors performed surgery the following day. Now, just two months after surgery, Avery is almost entirely free from pain.

In this episode of the Major Pain podcast, Avery shares her encounters with doctors, family, and friends who believed her symptoms were “in her head” rather than actual physical symptoms. Being doubted led her to experience self-isolation and feeling as though she was alone in this journey. Avery reveals her struggle with depression and internal blame for her condition. She details her perspective shift from anger at her situation to feeling overwhelmed with support from her loved ones once her tumor was discovered. In her healing, Avery started to look inward to see her beauty and inner strength. Further, Avery shares the importance of advocating for yourself, trusting that your pain is real, and believing in yourself. Now that her acromegaly tumor is removed and is no longer causing bodily growth, Avery is recognizing how this journey has prompted emotional growth in its place.

Subscribe to Avery's Substack: https://substack.com/@averylaaa

Sydney Anne Bennett lives with functional neurological disorder (FND), which is a condition where the brain doesn’t communicate properly with the nervous system. Sydney's symptoms include chronic pain, hallucinations, loss of taste, trouble sleeping, hand paralysis, seizures, ataxia, muscle spasms, fatigue, and difficulty using her legs. Consequently, after a year of fighting symptoms and multiple emergency room visits, emergency room doctors referred her to a neurologist who diagnosed her with FND. 

Sydney shares her experience with a neurologist who indicated that her symptoms were due to past trauma and that she was “just stressed out.” The neurologist referred her to a psychiatrist and canceled further imaging despite finding unusual white matter in her brain. Following her own research on functional neurological disorder, she recognized that FND is not simply a stress response. Rather, FND is a real disease indicative of dysfunction in the connection between the brain and the nervous system. Moreover, Sydney consulted with a different neurologist. The neurologist also confirmed the FND diagnosis after a detailed workup with brain and spine scans and ruled out multiple sclerosis. Sydney accepted the condition and worked on symptom management once she recognized that this diagnosis wasn’t in her head or brought upon herself.

In this episode of the Major Pain podcast, Sydney discusses her chronic illness journey with functional neurological disorder as a new mother. She shares her initial insecurity and then acceptance of using mobility aids to navigate her symptoms and to improve quality of life. Further, she reveals her process of gaining confidence by changing her mindset about disability. On social media, Sydney has become an advocate for people with FND. Additionally, she has found connection and community, and works to break the stigma of FND, disabilities, and mobility aids. Through confidence and faith, Sydney is making the best of her journey with FND.

Connect with Sydney Anne Bennett on her website: https://sydneyannebennett.com/

Kyle Ayers is a well-known comedian, famous for his podcast 'Never Seen It' in which comedians re-write a scene from a show or movie they've never seen. Kyle is also living with a severe chronic pain condition called trigeminal neuralgia. When he was first diagnosed with this condition he was initially happy, having finally found an explanation for the severe right temple pain that had been plaguing him for the past three years, a pain that had confounded doctor after doctor. But when Kyle began to research trigeminal neuralgia and discovered that people online were calling it the 'suicide disease,' his relief at getting a diagnosis was short-lived.

Doctors don't know what triggers the trigeminal nerve in the face to start jumping around, causing the electric shock-like sensations that are typical in trigeminal neuralgia. Unfortunately, when this condition is triggered it is remarkably difficult to manage. There is a procedure called microvascular decompression that can be helpful, but as Kyle learned first-hand this relief can be temporary.

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In this clip, Kyle Ayers describes what trigeminal neuralgia feels like.

In this episode of the Major Pain podcast, Kyle talks us through his journey with trigeminal neuralgia. He discusses the difficulty in getting a diagnosis, his experience with microvascular decompression and the medications he has tried. One of his coping mechanisms is performing comedy, and he has recently been working on a new stand-up show that centers around his experiences with trigeminal neuralgia, which he will be performing at the 2024 Edinburgh Fringe Festival.

Check out Kyle's podcast and other work on his website: http://kyleayers.com/

Rho has a self-described laundry list of diagnoses, and she has had to fight for every single one. Her list includes autism, ADHD, bipolar 2, CPTSD, excoriation disorder, keratoconus, IBS, GERD, chronic kidney disease, tactile allodynia and chronic pain. Along the way she faced constant medical gaslighting and dehumanizing treatment, with doctors more likely to brush her off than provide appropriate care, and a lack of support from her family. Of her journey to uncover these many diagnoses, Rho says, "It's been a long difficult fight to get to where I am now. I'm pretty proud of where I've gotten."

In this episode of the Major Pain podcast, Rho walks us through her chronic illness journey while defining her rare illnesses like allodynia and keratoconus. Her chronic pain remains a frustrating mystery, since doctors have yet to pin down a cause or provide relief. The pain is focused in her extremities, particularly her hands and traveling from her hips to her knees. Rho wonders whether there may be an underlying cause yet to be found that may shine a light on her situation. While pursuing answers she is also fighting to get on disability, which is another uphill battle. She discusses how chronic illness has touched every corner of her life, reflecting on the good and the bad that has come from these health challenges.

Rho also tells us about her work with Mask Bloc Seattle, a mutual aid organization providing respirators and masks to people in need. Learn more: https://linktr.ee/maskblocseattle

Host of Major Pain Jesse Mercury has just released his synthpop album 'SciFi' on all major streaming platforms! The album features his song 'Time Machine,' which you may recognize as the theme music from Major Pain. Click here to listen: https://tr.ee/t-TPmnAIRh