Note: This article talks about joint displacement, dislocations and surgeries. If these things bother you, please proceed with caution or check out one of our other articles.
Last October, I got some… interesting news. I say interesting because I’m still not sure what to think of it, but I thought I would share my story with the readers of Her Campus Chapel Hill, just in case any of you are going through something similar. Last semester, I went to the doctor and was diagnosed with a connective tissue disorder, a genetic fluke that means my body doesn’t produce healthy collagen. For those of you who aren’t bio majors, collagen is one of the building blocks your body uses to make, well, everything. Collagen is in every organ system in your body. It makes up your skin, your digestive tract, and (most importantly for me) your ligaments, AKA the things that hold your joints in place.
Having faulty collagen means that my joints dislocate. A lot. I’m currently averaging around 20 partial or full dislocations a day. If you’re thinking “Oh, my God, how did she not realize something was wrong before the age of 22,” well, that’s a pretty good question. Connective tissue disorders (or CTDs) are pretty rare, and I was always in sports like gymnastics and swimming growing up, so my family, my doctors and I chalked it up to flexibility and overuse. I also didn’t realize that I was partially dislocating joints on the daily. When you’ve always felt pain, you kind of just assume it’s normal and that everyone feels the way you do. Getting this confirmed was an emotional rollercoaster, though, and here are some of the things I felt:
Relieved
It may sound weird, but it was a huge relief to know that there was something identifiable wrong with me. I wasn’t the only person in the world with this particular set of issues, and I knew what to watch out for, now that I had a diagnosis. I could also connect with other people who were going through the same thing that I was, people who understood exactly what I was going through
Validated
Growing up, I was always getting injured. I sprained my ankle about 25 times before the age of 15. (I actually didn’t know this was weird until someone mentioned it as a sign of a CTD, and I started asking my friends how many times they had sprained their ankles. They all said zero.) I would step wrong, and everything would start hurting, and I had no explanation as to why. Looking back, I know I was dislocating joints, but at the time I was often accused of not really being hurt or playing it up for attention. Having a diagnosis made me feel validated because it meant that I wasn’t making this all up.
Scared
The thing about genetic disorders is that they’re generally incurable. At the same time as I was being told there was I reason I was in constant pain, I was also being told that there was no way to fix me. Surgeries to stabilize my joints would invariably fail, and my joints would get worse over time as my ligaments got more and more stretched out. Being told, at 22, that you’re likely going to be in pain for the rest of your life and that you’re most likely only going to get worse is terrifying.
Like Something Clicked into Place
No, it wasn’t my shoulder popping back into its joint (although that also happened). So many things in my life made sense. The fact that the dentist always had to give me three extra numbing shots. The way my kneecaps moved when I went up the stairs. The fact that I could do the splits without even trying. Reading stories of other people with my condition made me feel seen and deeply known. Other people’s stories sounded almost exactly like my own, and things that had always seemed a bit off made perfect sense in the light of a CTD.
Mournful
I cried for about three days straight after I got home from the doctor. I don’t think I was really even aware of why, but I now know that I was in mourning. I was saying goodbye to the life I had planned for myself, to things I had always imagined. I was mourning the loss of the version of myself that could see a light at the end of the tunnel. I’ve been dealing with my shoulder dislocating since I was 15. It stopped my swimming career, even after surgery (which failed), and I was always hopeful that I could get back to where I was, that there was something in the medical world that could fix me. I had to change my mindset from one of “this is going to be over someday” to “there are ways to manage my symptoms and improve my quality of life.” That was a hard change to make, and I’m still working on it.
Stressed
Getting a life-changing diagnosis during midterms while away from my family was stressful. And, as I’ve recently discovered, my body’s reaction to extreme stress is essentially to just stop holding my joints in place. I dislocated more joints in the week following my diagnosis than I ever have. On top of everything else I was feeling, I was in extreme pain because my body was quite literally falling apart.
Determined.
It took me a while to get to this point. All the previous emotions were ones I felt immediately after being diagnosed. After several days, or maybe even weeks, that rollercoaster morphed into determination. I refuse to let this be the defining thing about me. I refuse to sit in my room crying about the fact that I might be confined to a wheelchair one day when I’m currently able to walk around this beautiful campus and live my life. I’m still coming to terms with my disorder, and I have setbacks and times when I’m back on the rollercoaster. But I’m dealing with it, and I’m going to be okay.
Everybody reacts to big news differently, whether it’s moving to a new place, learning something shocking about a close friend, or finding out that your body doesn’t make collagen the way it’s supposed to. This is just some of what I went through personally. Thank you for reading this far, and if you’d like to learn more about CTDs, you can find information at the following links:
WebMD https://www.webmd.com/a-to-z-guides/connective-tissue-disease#1
MedlinePlus https://medlineplus.gov/connectivetissuedisorders.html
The Ehlers-Danlos Society https://www.ehlers-danlos.com/