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By Emma S.
I was in 8th grade when I first noticed that my pain—my body—is different. During after-school dance, I was coming out of a handstand and my foot got caught in my pant leg. I fell on my chest. Everyone came over to ask me if I was OK.
I said, “It’s only a little more pain, it’s not a big deal.”
Everyone went quiet and my best friend asked me, “What do you mean only a little more pain? Why are you in pain?”
That moment was when I realized that everyone wasn’t in pain all the time; but I brushed it off. A year later, when the dance team was performing at Disney, I tripped. I fell into a brick wall and smacked my head on it. I got up and kept walking. I performed later that night.
It turned out I had two broken toes and a severe concussion; I was in so much pain on a daily basis that I didn’t realize I was injured.
I didn’t tell anyone about my pain because of my anxiety. I felt abnormal. Bottling it up made me depressed and I dropped out of school. When my mother enrolled me in my new school, I was nervous that it would be like my last school—painful. But I was pleasantly surprised. I never felt pressured to do things I couldn’t, even without a diagnosis, which gave me the courage to use my voice to tell someone that I was in pain and seek a diagnosis.
In November 2018, I finally told my primary care doctor that I was hurting all the time. I told her that I could barely get out of bed to go to school; I told her that when I write I can feel my hands and wrists straining to hold the pencil; I told her that when I wake up in the mornings I feel like I haven’t gotten a wink of sleep; I told her everything that was wrong with me.
My life changed. She referred me to a rheumatologist who told me I have Ehlers-Danlos syndrome. Everything started to make sense: why I was in so much pain; why I could bend in strange ways; why no matter how hard I tried, I couldn’t keep my body in the proper positions for dance.
Hearing my diagnosis made me feel lighter, like something that had been weighing on me was gone.
I’ve always been an anxious person; I have multiple anxiety attacks in a week. Some days I feel like I’m a stick of TNT lit from both ends, on the verge of exploding. Being diagnosed was a huge weight off my shoulders. It let me say, “No.” It gave me the freedom to say, “I can’t do that because I’m sick.” I’m still learning how to say this, but my diagnosis has been a critical part of that.
I ignored 16 years of red flags and it wasn’t until I got so sick that I was missing 70% of my days at school that I got up the courage to go to the doctor. The fear of being called a “drug-seeker” prevented me from looking for a diagnosis, an explanation, and proof that what I experience every day is real.
More people need to be educated on invisible illnesses. It’s important to tell people so people with the disorders don’t feel ashamed or alone, to teach so other people can find resources when they need them. I don’t know why I have this disease, but I do know there is a reason: so somebody else doesn’t have to feel so alone and broken.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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