I Advocated for My Friend's Disease for Years – Then Realized I Had It, Too
It’s a story you wouldn’t believe unless you knew it to be true, and I promise you, it’s true.
At the end of my sophomore of high school, I sat in my Student Leadership classroom learning about what I would be doing the next year. I met a freshman named Briana who, unbeknownst to me at the time, would become one of my best friends. Later that year, when I was officially a junior, I learned that Briana had Ehlers-Danlos syndrome, a rare disease that continues to baffle some of the greatest medical minds.
I looked into EDS and, as I got to know Briana more and more, I began to see the hidden difficulties of EDS.
I was determined to make a difference. I wrote my research project about the lack of EDS-specific assistive devices, where EDS comes from and what consequences the illness may present for people in the future. With the support of our amazing teachers, Briana and I took on the school. I would not let her zebra stripes stay invisible. We raised money for the EDS research center in Maryland and we explained EDS to people who were not familiar with it. We had t-shirts made by our teachers, we had posters, we had a daily announcement in the month of May to raise awareness about the often invisible illness and when Briana went in for surgeries, we all rallied to support her. This went on for three years; even after I had left high school, everyone there continued to support her.
All my life I’ve been extremely flexible. I am small and I’ve never been particularly good at sports because I was injured all the time. I had pain in my legs and in my joints and when I was very young I would cry whenever I had to walk for a long time. I was so exhausted but I didn’t know why. These were all things that we thought I just had. Weird things that happened to me and not my brothers, but no one ever really thought much about it because it had been happening all my life. But in the past year or so, it has gotten much worse. These “weird things” would happen constantly. I would get injured doing practically nothing. I would pick something up and my arm would shift out of place. We began a search for what was going on with me in July 2016.
I was tested and tested and nothing was found. I was told to go to this specialist and that specialist and then another one. I had nearly 20 appointments in eight months, but my blood work continuously came back normal and I continued to baffle my doctors.
I remember one doctor saying to me, “Wow, you’re in a lot of pain…do you have a psychologist?,” implying I couldn’t possibly be telling the truth. Two weeks ago I was stretching and realized how far I could stretch, even though I haven’t been stretching regularly. Things began clicking, so I Googled images of “hypermobile joints.” I tried moving my joints in the same way as the people in the pictures and – surprise! They could do it all. I was baffled. I went around to all of the people in my apartment and the one across the hall grabbing at their hands and arms to see if they could move the same way I could. No one could – not even my brother. I texted Briana describing my symptoms and asked if she could move like this or like that. She could, and I remember so clearly her seemingly hesitant responses: “That all sounds pretty familiar,” “Yeah…I can do that…why?” and finally, “What if you have EDS?”
It all started to click. All of that research I had done years before began flooding back to me and I thought more and more about the possibility. Finally, my mom and I were in the exam room of rheumatologist number two. While waiting for the doctor I commented on how Briana still has to explain her condition to the doctors she visits. The doctor came in, asked me about my symptoms and left again. When he came back he started bending my fingers back, touched my thumbs to my forearms, had me put my hands on the floor…everything he tried, I was able to do.
March 9th, 2017: the day I earned my stripes.
I could hardly believe it.
Hypermobile Ehlers-Danlos syndrome. The exact same condition Briana has lived with for over seven years. The exact same condition I spoke about in high school daily. We still can’t believe it. Briana can’t believe it. I felt her pain without even realizing it. It’s like I knew before I knew. My doctor knew as soon as he heard me speaking about my issues. He looked at me and said, “That shoulder thing…that’s called subluxation. That’s a real thing.” I looked back at my posts on The Mighty and couldn’t believe what I had missed. In the comments on my posts were zebras telling me what I should have already known.
All I can say is how glad I am to finally have a name for my condition that helps everything make sense. And I’m even more glad to know that my partner-in-crime in high school will continue to be with me every step of the way. Briana taught me so much without even knowing she was teaching me about my own condition.
It feels like the kind of thing you see in a movie and think to yourself, “Huh. That’s pretty bizarre! That would never happen in real life.”
And now, on March 10th, 2017, I change my bio on The Mighty to read: “I write about Ehlers-Danlos syndrome.”
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