Hi, I’m Rey! About two years ago, I graduated with a master’s degree in dance/movement therapy and fulfilled my lifelong dream of becoming a dance/movement therapist. Against the odds of a complicated, challenging life, I had finally begun living the life I wanted in a career I felt passionate and excited about. For the first time, I was thriving!

But after a planned surgery in late 2024, my body began decompensating. I developed constant, severe pain in my lower back, which progressively spread upward through my spine into my neck and head. It then spread all over my body, bilaterally, and became so debilitating that I started to miss work. I was in my first job as a dance/movement therapist, and I was determined to keep going. For over a year, I sought medical diagnostics and treatment, and I pushed through the pain to keep functioning. I did physical therapy, medications, and pain management; but instead of the pain decreasing, it got worse. I was misdiagnosed over and over, my pain and other symptoms dismissed. In the delay of proper medical care, I developed multisystemic symptoms including severe exertion fatigue and malaise, dizziness, nausea and abdominal pain so bad that I couldn’t eat, and full body weakness that made it difficult to get around. I had to adapt my work for my own accessibility and relearn how to practice dance/movement therapy when I had barely started. I began using a cane every day because the dizziness would cause me to lose my balance. Then I tried using a rollator because I couldn’t walk more than a block without having to stop and sit to rest. I pushed through for so long because I had to—doctors didn’t take me seriously, nor did my employer. The message I kept receiving was “manage your stress, think positively, and don’t give up.”

In April 2026, I couldn’t do it anymore. My body was in full collapse, and I ended up in the hospital, then bed bound at home. I did, however, finally find a doctor who took me seriously, and I finally set out on a path of getting accurate diagnoses and proper treatments. The problem is that when I finally got adequate medical care, my condition had already progressed to the point where I could no longer function without intensive treatments, mobility support, and accommodations. I have been on unpaid, extended medical leave from work since early April, and in that time I have had to begin using a wheelchair full time and have established treatment regimens with no less than 10 specialists. I have been diagnosed with a rare genetic condition called Hypermobile Ehlers-Danlos Syndrome (hEDS) which means I have faulty connective tissue that causes my entire body to have to work harder to sustain basic body functions and mobility. I’ve also been diagnosed with Mast Cell Activation Syndrome (MCAS), which became clinically significant as catalyzed by my surgery and likely mediated the progression of my hEDS to its current level of severity. I’ve also been formally diagnosed with Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS), which is where the dizziness and severe autonomic symptoms come from and is also the most difficult type of POTS to treat. If that wasn’t enough, I have also been diagnosed with Thoracic Outlet Syndrome, a 34 degree symptomatic thoracolumbar scoliosis, migraines, and Chronic Pain Syndrome.

You know what, though? I’m getting better with treatments. More importantly, I’ve been able to reengage with life because I’ve been using a wheelchair. Even though I will always experience symptoms of my chronic conditions for the rest of my life, I feel ready to get back to my career. However, because I’m now a wheelchair user, I’m not able to return to my job with my current employer. It’s partially an issue of inaccessibility and safety, but mostly it’s an issue of ableism and discrimination in healthcare. My employer has been unwilling to evaluate and approve my individual reasonable accommodation needs, leaving me on forced continued medical leave with further loss of income and rising medical bills until I can convince another employer to hire me—a disabled dance/movement therapist.

Furthermore, I’m in the process of being fitted for a custom-measured wheelchair to allow me to move freely while supporting my body’s needs, and I’ve learned that my insurance (which I am now getting very expensively through COBRA) won’t cover some elements that I need, including a power assist device to protect my upper body from joint subluxations and injuries. Medical costs are piling up, financial assistance I’ve received is nearly depleted, and now my living expenses to keep a roof over my head and safe food in my body are about to be impossible to sustain.

I’m not giving up. I refuse. I have so much life in me, but I have learned this year that I need my community to survive. Despite my fear of asking for help, I am humbly asking my community for financial support to help me cover outstanding medical bills, living expenses such as rent and utilities, my wheelchair and power assist device, essential wheelchair accessible transportation, prescription medications, COBRA insurance premiums, and health equipment I need to make my home more accessible. Some of these expenses are known or have fixed one-time costs, and others are dynamic, recurrent, or not yet clear. I am setting my initial fundraising goal based on the costs I know of currently, and I will update it when other costs become known to me.

I know our current collective situation has caused so many of us to be in hardship, and I know that there are many in far worse hardship than me at this time. Still, I can’t do this on my own, and I know that small amounts from many can add up to life changing support. I plan to utilize funds raised to support my return to my career, in which I am already working on developing accessible, disability justice oriented methods within dance/movement therapy to facilitate connection and joy in this community. We need it, and we deserve it. Thank you for supporting me and sharing my story with your networks to make this possible.

With hope and gratitude,

Rey