Moving Forward While Looking Back — 10 Years Of Dislocations

I’m still incredibly unsure of how to discuss my illness openly, which admittedly feels a little odd for me to say. I used to talk about my health often, and relatively easily too. Five years ago, I entered a period of my life where I was learning so much about my body, my pain, and what it meant for me. My diagnosis at the time, Endometriosis, came with an immense sense of urgency to share all that I could. Every doctor’s appointment, surgery, win, and loss that I endured was recorded in some way so others could walk through it with me. With 1 in 10 women battling Endometriosis, I felt there was purpose throughout that chapter in sharing all I could so others could hopefully avoid useless surgeries, misinformed doctors, and the average 7-10 year wait time most are forced to endure before getting properly diagnosed. Despite not knowing all the complexities my health would reach at that time, I’ve tried my best to continue forward with that same level of vulnerability, though not always doing so perfectly. 

The truth is, after years continually being referred to as a medical enigma, with countless questions I got used to never having any explanation for, I was diagnosed with Ehlers Danlos Syndrome in the autumn of 2020 after my endo specialist suggested something musculoskeletal may be at play and I was referred out of his care. Not even a year out from my last surgery, the diagnosis hit me as unexpected and devastating news.

Prior to this, there had always been a part of me that worried I really was fine — that answers would never come simply because there were none to find. That fear only grew every time a doctor shook their head to tell me they didn’t know; an exchange that’d become painfully routine over the years. Now, I’d been given full knowledge of what was working against me, and learning the culprit was a genetic abnormality in which nothing can be done for initially had me sink lower into the feeling that my body was betraying me.

It didn’t take long, just until the initial shock passed, before the pieces started to come together, all fitting to create a timeline of my life that, now looking through the lens of recent findings, was perfectly evident of a body that had not just suddenly fallen sick in the last 5 years like we previously thought. My family and I would spend the next few weeks randomly blurting out every connection we made in our heads of how this illness had clearly presented in my life again and again, but always thought to be normal until now; My sister and I’s childhood party trick of popping our ankles in and out of joint while getting ready for bed, or not being able to walk during my 4th grade field day because my legs had lost all stability from attempting to jump rope with friends. I remember after my first dislocation at 13, doctors were surprised it only took me crouching down to my lower locker at school for my knee to do it. Leading to my first misdiagnosis of many, Osgood-Schlatter’s disease, I was assured I’d grow out of any future problems.

Getting X-rays after my first dislocation, 2012

Surprisingly, I’ve found a lot of healing looking backwards like this. I’d never been able to truly pinpoint a lot of the evidence before since, being only one person who has no way of stepping outside myself, I have no way of knowing how other people feel in their bodies. How different is it really? In some ways, I tell myself it’s not too different at all. I remember the frustration on that field day though, my ankles collapsing to the side at 90 degrees whenever I put any weight on them. My mom picked me up at the end of the day and I remember thinking to myself after attempting to step off the curb, falling once more, “Why is everyone’s body working better than mine?” Now, let me note quickly that I do what I can to abstain from self-pity. At this point in my life, it’s almost unavoidable to not highly normalize these instances now anyways, but that day in 4th grade was the first time I remember facing the question, and it’d echo again and again throughout the years.

Today, I’ve had a bit of time to process it all. I’m not nearly as overwhelmed as I was in 2020, despite the new challenges that have presented along the way. This diagnosis has undeniably healed many childhood wounds and much underlying frustration throughout my youth. There’s now closure on why I faced my particular surgery complications, although they remained seemingly unexplainable at the time. I know exactly why I had to join the front ensemble in high school band as opposed to marching like I had wanted, and why martial arts training only felt harder on my body as adolescence went on, eventually leading to me quitting. These were important moments for me as a teenager, most of which involved feeling inadequate a lot of the time. They’re areas in my life I’m now grateful to look back on with more clarity.

My recurring question, however, has changed. It’s no longer about pinpointing the differences in which some bodies “do and don’t work.” I can wonder all I want, but oftentimes, even the explanations I’ve found remain limited. My specific answer came down to a matter of genes, but past that, what can I do? How do I move forward? It’s now a question a bit broader, and I know so many who are asking themselves that same question amid a hundred different circumstances. I suppose that’s why I feel inclined to share. For many reasons even outside the scope of health, I’ve always felt hard to relate to, but I believe I’m learning it’s purely human nature to wonder if we belong. 

For me, building this small corner of the internet feels like a place where I fit in. I’ve always found such joy in creating. It’s something I’ve always known I’ve wanted to be doing, and each endeavor, whether it be poetry, drawing, gardening, etc., gives me such invaluable ways of better connecting with myself. My hope is that with a little vulnerability I can take all that and place it here where others can potentially find a little company along the way. Truly, it’s something I’m so eager to do. It feels a lot like moving forward.