Disjointed: My Life with EDS
Updated: Nov 24, 2020
To paraphrase John Green, I fell into chronic illness the way you fall asleep: slowly, and then all at once.
It started for me the way that it starts for many people, I believe, with small injuries and minor inconveniences, such as sprained ankles and easy bruising. Eventually, those issues developed until they became daily battles of bruised cartilage, tendinopathies, and a number of subluxing joints. This injury parade became a problem that desperately needed addressing. After all, it is difficult to be a successful ballet dancer when your near-constant injuries leave you unable to participate in petite allegro for weeks at a time.
My stubbornness prevailed, however, and I found ways to make it work. I dove headfirst into cross-training with Jennifer Milner. She helped me to create a battle strategy of sorts, finding ways to overcome those daily obstacles. With her help, I began devoting time each day into building up strength and endurance so that I wouldn’t be injured at the drop of a hat. For quite a while, it worked. I started gaining muscle that I had been severely lacking, and soon found myself cast in better and better roles. With that came the confidence that all my hard work was finally paying off.
At age seventeen, I had a plan and a tentative diagnosis. After discussing my long list of injuries and other ailments, such as migraines and frequent dehydration, my primary care doctor thought it likely that I had Ehlers-Danlos Syndrome. I am eternally grateful that I was lucky enough to have a doctor who had even heard of EDS before. However, as I was not having any major problems, we all agreed that it was better if we just continued on with my battle strategy for the time being. I had planned on going away to a ballet summer course that summer with the hopes of getting a spot in the school’s professional division and staying for the year-round program.
Two months before my eighteenth birthday, I fell without a parachute into the world of chronic illness. I woke up with a brutal headache, one that was light- and sound-sensitive. Having had many migraines before this, I went through my usual protocol and waited for the pain to go away.
It decidedly did not go away, but all of my plans did.
I stopped dancing about five months after my headache began, because it was exacerbating the pain, both physically and mentally. I remember standing at the bar in first position, unable to combré forward or back, or pirouette, or fly across the room in the grand allegro combinations that I loved so much. I realized that it just was not working anymore. That day, I hung up my pointe shoes after fifteen years of dancing, and had to learn that reaching that point where I did not dance anymore is okay. That concept took a long while and many therapy appointments to sink in, but in the end, I am grateful and proud of myself for making that decision, because it was a very difficult choice to make, but ultimately, the right one for me.
After nearly two-and-a-half years, my headache is still here, every single day. And it is still brutal, as is the nitty-gritty of all of the doctors appointments, tests, prescriptions, and procedures I have gone through to try and derail it. All of these treatments had varying degrees of success, but none of them were fully successful in eradicating the pain. The biggest end result has been that my entire life pivoted on the axis of chronic pain. I went from being a pre-professional ballet dancer to being, in my own (incorrect) opinion, nothing at all. I was wading waist-deep in pain and doctors. To some extent, I still am in a midst of all of that, but I like to imagine that I am only ankle-deep now.
It was a long process to go from chronic pain newbie to experienced veteran. Most of it was filled with trial-and-error approaches, and there have been just as many if not more failures than successes on that front. I had to learn that my body is unique, and that the seemingly “magic” treatments that fixed other people’s ailments, no matter how similar the problems may seem, may not cure mine. But I also learned how to take care of my body and mind, something I doubt I would have learned if I had not had this experience.
The best and really only treatment for EDS is symptom management, which means a lot of time spent trying to find out what works for my body and what does not. I discovered that hydration is critical; many traditional migraine treatments made things worse; regular gentle exercise has been indispensable; and loud, cavernous spaces like malls are only to be taken in small doses as they increase the pain exponentially. I always keep a tube of Benadryl cream on hand for the random hives that often pop up on my skin, and small meals of easily digestible foods are the best way to help with my gastroparesis.
The comorbidities that go with EDS are many, and often difficult to treat in a hospital or doctor’s office, but I found small things to do everyday as a preventative treatment that keep my body working at its best. I call this my “baseline,” and it is a mix of simple steps like gentle stretching and strengthening exercises, drinking lots of water, getting an adequate amount of rest, and the like that keep me running smoothly.
One of the many lessons I had to learn during this process was that each day is a new adventure, and I never know how it is going to go beforehand. Some days, my pain is excruciating, and I end up laying in bed all day surrounded by heating pads, ice packs, darkness, and quiet. Other days, I am grinning and going to the movies and finishing up assignments for the college class that I worked so hard to be able to start taking.
Forgiveness has also been something that I had to learn during these past two years. There are inevitably some bad days where I cannot manage a way to work through baseline, and I had to learn to forgive myself for that. Doing your best is all you can expect of yourself, and what your best is varies from day to day, especially concerning chronic illness. The best thing I can do is just take a deep breath, and then try again tomorrow, even if that means cherry-picking certain parts of the baseline rather than completing the whole routine. Taking a day of rest every now and then is critical, but the days where you do even one of the baseline activities sets you back on the road to doing all of them, and that is just as important.
All in all, it has been a hard and long journey, and one that I know I am nowhere near done with yet. I have no doubt that there are more bumps in the road to come, more lessons to be learned, more plans changed, and more workarounds to be discovered. I might be taking minuscule steps to get there, and where “there” even is, I have no idea, but the point is that I am still moving, one step at a time. The greatest lesson that I have learned in the two-and-a-half years since I fell down the chronic illness rabbit hole is that where my “there” is does not matter nearly as much as the act of continuing to take those steps, one hyper-extended leg at a time. That journey in and of itself, wherever it may lead, is my greatest triumph.
photo credit: Fermaint Photography