When a Party Trick Turns Out to be a Chronic Illness

I have a genetic disorder called Ehlers-Danlos syndrome and in my podcast episode you’ll hear me talk about collagen, why mine doesn’t work, and how all my connective tissue (ligaments, tendons, skin, etc) falls apart. It’s somewhat of a rare disorder and my laundry list of injuries and complications has been the fascination of more than a handful of physicians and medical students, it’s even landed me in a couple of medical studies, but I’d hardly say it’s the most interesting thing about me.

I remember being about 5 years old, my sister about 10, and being at a family friend’s party. Some of the guests were marveling at my sister’s ability to put her hand flat on a table and turn her elbow all the way around without picking up her hand. Never wanting to be left in the shadow of my older sister, I tried and was able to do the same thing. Throughout my childhood and adolescence people would occasionally marvel at how my knees extend backward when i stand or my elbows remained in a constant state of hyperextension, but it was normal, right? My mother and my sister and my grandmother, they all had the same traits so it couldn’t be that unusual. I felt the same way going into my first shoulder surgery when I was 16, my mother had shoulder surgery, my sister had just had both of her shoulders fixed, this was normal.

No one had mentioned Ehlers-Danlos syndrome to me until I was 19 and suddenly it was on the lips of every doctor I saw, my constant joint pain was now taken seriously and all those weird contortions I used to do to amuse my friends were “symptoms.” It was nice to finally be able to put a name to these mysterious issues that had been plaguing my family for generations, but now I felt like I was supposed to be careful all the time. And ya know, I tried to be careful, I really did, but I am not careful. I am clumsy and mischievous. I like pushing the envelope and I’ve had 6 surgeries in the last 10 years. When I try to live my life “carefully” I get bored and anxious and I start worrying about how to prevent my next dislocation or surgery and it’s pointless. When I was in college I dislocated my ankle attempting to swat a fly in a friend’s kitchen and ridiculously enough, I had a moment of clarity. I realized if swatting a fly was going to land me in the emergency room then no level of precaution was going to change the fact that I have a chronic illness and sometimes it’s going to win a round or two.

So now what do I do? I dislocate joints, I spend time in various doctor’s offices and emergency rooms, but I go to music festivals, I take road trips, I’m pursuing a graduate degree, I’m planning a trip to China, creating a series of short documentary videos and I’m trying to live a life that’s more intriguing than my medical history.