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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 describes the sensation of having a seizure, including the first seizure she ever experienced. Amee suffers from simple partial seizures, where she does not lose awareness or consciousness, but is not able to move until the seizure passes. A huge piece of her story is the medication she takes, and the side effects it causes. Sometimes it feels like these side effects are more of a major pain than the epilepsy itself. Amee also discusses the power of turning to public advocacy, and how it has precipitated intense emotional healing to no longer hide her disease.
PlayWatch the episode on YouTube, or listen on your favorite podcast platform. -
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.
Connect with Steve on Instagram: https://www.instagram.com/splovelace/
PlayWatch the episode on YouTube, or listen on your favorite podcast platform. -
Puuttuva jakso?
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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 they 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 this gift. Email us at [email protected] and tell us a bit about your health journey so far.
You can also contribute to the Undiagnosed Disease Fund, in the hopes of helping more people! https://www.gofundme.com/f/our-registry-the-undiagnosed-disease-fund?attribution_id=sl:b2f12341-d3a8-4a01-8efc-588023fac387
PlayHere is a video from Andi and Jesse discussing their wedding registry, the Undiagnosed Disease Fund
In this episode of the Major Pain podcast, Andi and Jesse discuss their wedding, the Undiagnosed Disease Fund, and an unexpected update to Jesse's health journey. While his own genetic testing did not reveal a diagnosis, new information has been provided by re-running his genome sequencing to report out carrier testing. He has tested as a carrier for a disease called cystathioninuria, which can cause movement disorder symptoms eerily similar to what Jesse has experienced. Although he is only a carrier and should not actually have the disease, he moved forward with blood work that shows evidence that he may have some form of this condition. Since cystathioninuria is so rare very little is known about it, and he is struggling to find information. Please reach out at [email protected] if you have any relevant information to share!
There is no video version of the podcast this week, as this episode was recorded in person instead of via Zoom. There will be no new podcasts for the remainder of November, while Andi and Jesse are on their honeymoon. We will be back with new episodes in December. Patreon subscribers can look forward to a special bonus episode, recorded from a honeymoon suite in Jamaica! Sign up on Patreon to gain access to all bonus episodes, receive special gifts, shoutouts and more: https://www.patreon.com/majorpainpodcast -
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.
Learn more about Guava at https://guavahealth.com/
PlayWatch the episode on YouTube, or listen on your favorite podcast platform. -
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.
PlayWatch the episode on YouTube, or listen on your favorite podcast platform. -
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.
Check out My Spoonie Sisters: https://linktr.ee/myspooniesisters
PlayWatch the episode on YouTube, or listen on your favorite podcast platform. -
Dr. Melanie Hoppers never planned to become an expert on chronic fatigue syndrome (CFS). She learned about it briefly in medical school, but her professors largely brushed off the complaints of CFS patients. It wasn't until her own daughter got sick that Dr. Hoppers began to research CFS, becoming desperate to find anything that might help. That's when she discovered the work of Lucinda Bateman and the Bateman Horne Center, a clinical care and research institution specializing in CFS (also known as myalgic encephalomyelitis or ME) that focuses on educating not just patients, but healthcare providers about this complex illness. Dr. Hoppers learned so much about how to manage CFS and it's common comorbidities like mast cell activation syndrome (MCAS) that she soon decided to join forces with the Bateman Horne Center to fight back against these complex chronic diseases.
In this episode of the Major Pain podcast, Dr. Hoppers discusses her journey from CFS caregiver to practitioner. She shares the personal history of her daughter's illness that brought CFS to her attention, and discusses how learning to combat this disease has changed the course of her professional life. We also discuss the disease itself, and some of the techniques the Bateman Horne Center is utilizing to manage it. She tells us that many people with CFS/ME also have to deal with MCAS, while sharing the basics of bringing mast cells under control. She also discusses the importance of pacing for those suffering from post-exertional malaise (PEM), her thoughts on low-dose naltrexone (LDN) and an overview of the important work being done at the Bateman Horne Center.
Learn more about CFS/ME, MCAS and more at the Bateman Horne Center website: https://batemanhornecenter.org/
Sign up for their upcoming webinar: Severe ME/CFS: Care, Rights and Research
PlayWatch the episode on YouTube, or listen on your favorite podcast platform. -
For Kindra, it's been a 17 year journey to figure out why she is chronically ill. Her symptoms started around 14 years old, and include not just widespread chronic pain, but also severe fatigue and brain fog. Although the pain is difficult, the fatigue has the most detrimental effect on her functionality. Two years ago she was told she fit the profile of someone with lupus, but this past June the rug was pulled out from under her when she was officially diagnosed with fibromyalgia. She is now going through the process of getting to know herself all over again, while fitting this new diagnosis into her self-image.
In this episode of the Major Pain podcast, Kindra discusses how living with chronic illness has impacted her personal journey. She spent years being gaslit and ignored by doctors, experiencing the depression and loneliness of people not believing or validating her symptoms. Although there is huge relief in finally finding doctors willing to listen, her rheumatologist believes she may also have an autoimmune disease, leaving a sense of unresolved uncertainty hanging over her diagnostic journey. Like many people living with chronic illness Kindra has lost friends who were unwilling to believe or accommodate her symptoms. But she has also found a powerful sense of belonging within the chronic illness community, finding strength in going public with her diagnosis.
Connect with Kindra on TikTok: https://www.tiktok.com/@rin_a_kinkin
PlayWatch the episode on YouTube, or listen on all podcast platforms. -
In 5th grade Billie's classmates were all evaluated for scoliosis, and she was the one person in her entire class who had it. Scoliosis is a condition in which a person's spine has an irregular curve, and as Billie got older this condition got worse and worse. Her spine was bent 53 degrees on top and 38 degrees on bottom and she also developed kyphosis, an excessive rounding of the upper back. These two conditions were so severe that Billie's internal organs were being crushed, forcing her diaphragm upwards into her rib cage and compressing her heart. She was in constant pain and began struggling to breathe.
In this episode of the Major Pain podcast Billie (known online as BillieBillieB AKA 'The Pyrex Lady') talks us through her history with scoliosis and kyphosis, including a posterior spinal fusion at 17 years old. Two nine inch rods and 14 screws were surgically installed to straighten her spine, eliminating the kyphosis and improving her spinal curvature from 53 and 38 to 17 and 11. She went under anesthesia at the height of 4'10" and woke up 5'1". Standing up after surgery was the first time in her whole life that she stood eye to eye with her mother.
Billie discusses the possibility that her scoliosis may be co-morbid with a connective tissue disease called Ehlers-Danlos syndrome. She has always been hypermobile and extremely flexible, and has begun to wonder if a connective tissue disease could explain why her spine developed with such extreme curves. Now that she has undergone spinal fusion, she remains extra flexible everywhere except her spine. Moving forward she will continue to pursue answers regarding EDS, hoping to piece together an inclusive picture of her health journey.
Connect with Billie online: https://billiebillieb.carrd.co/
PlayWatch the episode on YouTube, or listen on all major podcasting platforms. -
When Angela was 25, she was used to physically pushing her body. She was a runner who had always been healthy, besides being suspiciously hypermobile. Then one day at the gym she suddenly became unusually exhausted, and her legs felt like they were on fire. This would kick off a years-long diagnostic odyssey that would see Angela diagnosed with several chronic illness including psoriatic arthritis, psoriasis, small fiber neuropathy, hypermobility and more. That burning in her legs was nerve pain caused by small fiber neuropathy. Discussing this disease, Angela says she has a "special place in my heart for that little monster, it helped me get diagnosed with everything else."
In this episode of the Major Pain podcast, Angela educates us on psoriatic disease (psoriasis and psoriatic arthritis) while also recounting her diagnostic journey. The quest to diagnose her multiple chronic symptoms involved horrific medical gaslighting, misdiagnoses and mistreatment. But it also highlights the wonder of finding the right doctor, when she found a neurologist willing to also order rheumatology labs when Angela's own rheumatologist refused to do so. Throughout this process Angela felt internal and external pressure to hide her pain and continue to push through. She discusses the importance of being kind to yourself, self-advocacy and seeking community around chronic illness.
PlayWatch the episode on YouTube, or listen on all major podcasting platforms. -
Maureen has lived through huge health challenges, but her outlook is still one of gratitude. After the passing of her father she has lived every day like it is her last, remembering to laugh and live in the moment. This mindset has helped her navigate a slew of health challenges.
Maureen has been diagnosed with classical Ehlers-Danlos syndrome (CEDS), mast cell activation syndrome (MCAS), postural orthostatic tachychardia syndrome (POTS), fibromyalgia and more. She is currently being evaluated for Charcot-Marie-Tooth (CMT), a hereditary motor and sensory neuropathy of the peripheral nervous system.
In this episode of the Major Pain podcast, Maureen talks us through her health journey so far. Her journey ranges from a spondylolisthesis (spinal vertebra slipping out of place) and a back brace throughout senior year of high school, to years long issues with upper respiratory problems, to a recent brain surgery for hydrocephalus (accumulation of fluid in the brain) and even endometriosis. Maureen now has a shunt surgically implanted in her brain that drains fluid to her stomach. She tells us about going to the Ehlers-Danlos Clinic at the Mayo Clinic, where she learned about the crossover between EDS and fibromyalgia. Through it all, Maureen has cultivated a wealth of knowledge about navigating the medical system, and an incredible attitude of acceptance and perseverance.
PlayWatch the podcast on YouTube, or listen on all major podcasting platforms. -
A photo of artist KYRIANNA with her self-portrait
KYRIANNA is a watercolor artist based in southern Oregon, who creates striking images that visualize chronic pain and illness. Since these conditions are often invisible, KYRIANNA provides a profound opportunity for her clients to see a representation of their conditions. Her process involves an in-depth interview that she calls a "therapeutic visualization process," in which she gets to know her clients history and experiences with their condition, while also asking more esoteric questions like, "What color is your pain?" She then translates these answers into realistic portraiture with surrealistic elements layered on top to represent the pain or illness. As you can see from the examples in this article (and on her website KYRIANNA.art) the results are strikingly beautiful and haunting.
Artwork by KYRIANNA
In this episode of the Major Pain podcast, KYRIANNA discusses her artistic process as well as her personal experiences with chronic pain. She lives with a base level of pain every second of every day, mostly in her back, that can flare dramatically and spread throughout her body. Frustratingly, doctors have never been able to pinpoint a cause for her pain. Spinal stenosis (a narrowing of the spinal cord) has been discovered on imaging, but doctors have no idea what might be causing this to occur. KYRIANNA is at a point in her journey where she needs to put down the search for a diagnosis and focus on living in the moment, expressing her journey through her art as a way to both process what she's experienced and detach from her constant pain.
Artwork by KYRIANNA
Hear her story in this week's podcast, and see more of KYRIANNA's work at KYRIANNA.art -
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.
https://youtube.com/shorts/DtrDrAk8LVo?feature=share
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.
https://youtube.com/shorts/XFQ60ZG6jtQ
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
https://youtube.com/shorts/f-QC8jTBIGY
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/ - Näytä enemmän
