YouTube helped me to advocate for a diagnosis

Posted July 20, 2020

quinn j story

My name is Quinn and I’m just like you. I love to be with my friends, I love to cook, create art, and be in nature. I have a fascination with decorative skulls and an obsession with collecting flavored chapstick. I have lived with chronic illnesses my whole life. I was born with a urea cycle disorder (UCD) called Ornithinetranscarbamylase deficiency and was diagnosed with that at age 6.

I grew up in and out of the hospital constantly due to my UCD symptoms and dehydration. I had infections constantly. Looking back I had some pretty obvious EDS symptoms. I remember being a kid and stretching and bending in weird ways to entertain and gross-out my friends. I didn’t know it was bad for me. To us, it was just good fun. 

From being a kid to a young teenager, I was never able to work out much. I got exhausted very easily. I sat out a lot during gym class because everything was hurting and I was exhausted. My joint would crack and pop painfully all the time. Sometimes I got weird looks. It was normal.

I’m skipping a lot of information about my UCD but I got so sick from it at age 17 I ended up getting a transplant. I was doing pretty okay for about 5 or 6 months. Better than I ever have. That quickly changed and within a couple of months, I had gotten much worse.

My doctors and I believe that my transplant triggered my EDS to get worse because at the age of 18 I started having much more painful subluxations and dislocations. I went through episodes of extreme insomnia to sleeping 20 hours at a time and still being exhausted.

My TMJ has gotten worse and I developed PoTS in August 2018. I always woke up in bed in extreme pain and with joints that “looked and felt wonky”. I had watched a lot of Youtubers with chronic illnesses and was in a lot of chronic illness and chronic pain support groups so I could feel less alone. One day, Youtube recommended me to a YouTuber who had EDS. I don’t remember the video but something in the title caught my attention. I went down the rabbit hole of watching a bunch of her videos. She was very nice and friendly so that encouraged me to keep watching but her story about her EDS stuck with me because some of the stuff she talked about sounded just like me.

At the time I had had multiple meetings with a rheumatologist to rule out any autoimmune disorders. Every time he saw me he would test my Antinuclear Antibodies (ANA) and it would always come back negative. Well my next appointment with him after I had watched some more videos about EDS I mentioned to him that I wanted to get tested because it fit my symptoms the best (I haven’t talked about all my symptoms). He listened to me and agreed.

For me, my condition affects me the most because it limits my mobility, causes me extreme pain and fatigue, and makes it very difficult to eat and sleep. But I feel more hopeful now than ever. Having a name to my suffering empowered me and it made everything make sense. I now had an answer and a way to explain to other people what was wrong with me.

I try to get out of the house as much as possible (away from other people) because I’ve learned that going on walks with my family makes me very happy (even if I have to use my wheelchair). I’m getting into water PT soon and massage therapy. Bracing and massage help a lot. 

My dog and my friends have been very helpful and I’m seeing a therapist to help me deal with everything. I can honestly say I am feeling better mentally than I ever have in my entire life.

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