Jazz’s life with AMPS, FND, hEDS, POTS, Gastroparesis, Chronic Cholecystitis, CRPS, RSD, Juvenile Fibromyalgia, CFS/ME, Audio Processing disorder, and more

Hi! My name is Jazz Wessel. I’m 19 years old, and I’m an actor, professional singer, and choreographer. Performing has always been a huge part of my life, and it continues to shape how I express myself today. I live with multiple chronic health conditions, including Amplified Musculoskeletal Pain Syndrome (AMPS), Functional Neurological Disorder (FND), Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, Chronic Cholecystitis, Complex Regional Pain Syndrome (CRPS), Reflex Sympathetic Dystrophy (RSD), Juvenile Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), Auditory Processing Disorder, and more. This is my story!

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Question: What chronic health condition(s) do you have, and how long have you had it?

Jazz’s Answer: I live with several chronic health conditions, including Amplified Musculoskeletal Pain Syndrome (AMPS), Functional Neurological Disorder (FND), Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, Chronic Cholecystitis, Complex Regional Pain Syndrome (CRPS), Reflex Sympathetic Dystrophy (RSD), Juvenile Fibromyalgia, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), and Auditory Processing Disorder, among others. Many of these conditions have been present since birth, while others developed and progressed over time.

Question: If you were not born with your condition, what do you miss the most from before you had it? What do you grieve from prior? What’s one thing you were able to do before that you are unable to do now?

Jazz’s Answer: I was born with most of my conditions, but I often miss the mobility I had before my first major FND flare. I grieve the career I once envisioned for myself on stage, especially with dance. Movement has always been a huge passion, but now I am unable to do many things—particularly jumps and turns—that once came naturally to me.

Question: What are the main symptoms you experience?

Jazz’s Answer: My symptoms are wide-ranging and often overwhelming. I experience nausea, fatigue, brain fog, abdominal pain, dizziness, fainting and pre-syncope episodes, headaches, vision issues, joint pain, and nerve pain. In addition, I also deal with seizures, hearing difficulties, and frequent joint dislocations.

Question: How does your condition affect your daily life and school?

Jazz’s Answer: I often rely on different mobility aids to feel safe and need to sit frequently, which makes it difficult to fully participate in my classes since my major is very active. I also struggle with hearing and understanding what’s being said, which creates additional challenges in keeping up with coursework.

Question: What are the toughest parts about living with this condition? Be as specific as possible!

Jazz’s Answer: I live with pain 24/7, and many of my conditions have no effective treatments. Knowing that there may never be relief wears heavily on my mental health, especially during severe flares. The constant suffering and lack of solutions can feel overwhelming at times.

Question: What tips or strategies have helped you manage your condition?

Jazz’s Answer: Several strategies have made a difference in managing my symptoms. B12 injections help with my joint pain, and weekly infusions are essential for both NES and POTS. I also rely on a full-body heated massage pad, which provides relief and comfort during flare-ups. Using mobility aids whenever I need them has been crucial for my safety and independence, and even simple tools like alcohol pads help ease nausea. Together, these supports allow me to feel more stable and better equipped to face each day.

Question: What kind of support (from friends, family, or others) has been most helpful?

Jazz’s Answer: My family has been incredible. On the day I suddenly couldn’t walk—while we were out of my home state—my dad drove hours just to get me a mobility scooter so I could still enjoy our vacation. My mom takes me to all my appointments and advocates for me when I can’t speak up for myself. My dance team coach has also been amazing from the very beginning, adjusting choreography so I can participate safely without injury. And my friends have always gone out of their way to include me, adapting activities so I can be a part of them. Their support means everything.

Question: What’s one thing you wish people understood about living with a chronic condition?

Jazz’s Answer: Sometimes it’s really hard to act strong. There are days when I need space to break down and express exactly how I feel—and that’s okay. Living with a chronic condition is exhausting, and allowing room for vulnerability is just as important as showing resilience.

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