What It Was Like to Grow Up With Ehlers-Danlos Syndrome

When I was 6 years old I fell off my bike, and I cried so much that my dad had to carry me inside. For the next few days, I walked around with a bruise on my side that was as dark purple as my bed sheets, and I remember wondering if it was normal for the bones in my chest to hurt when I breathed.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

When I was 7 years old I was watching TV when my neck cracked and froze itself that way. I couldn’t move my head for a couple of days, so my mom took me to the doctor, and he pulled my neck away from my shoulders while my parents held my arms and legs down, and I cried because it hurt so bad, but I felt my neck pop again and then I could move. The doctor said, “That’s unusual,” but never did anything about it.

When I was 8 years old I was super excited to go to a “real school” and see if a homeschooled kid like me could handle the classrooms and teachers, but my joy was short lived the first day I came home with a headache so bad that I had to lay down before the sun had even gone away. Almost every day for the rest of the year, I remember that icepick in the back of my head, in front of my eyes, near my ears, resonating from my jaws sometimes, and it wasn’t until the summertime when I got a migraine so bad that I threw up from the pain that we went to the doctor. He checked my eyes and told me I was fine, that some people just get headaches sometimes.

When I was 10 years old my family went for a hike in the mountains and the pain in my knees was so bad that night that I couldn’t sleep so I got up and asked my mom for some ibuprofen, which didn’t take it away, and she thought they were just growing pains, but I didn’t grow an inch that year.

When I was 12 years old I taught myself to play piano because I decided I wanted to play my favorite songs on an instrument I loved, and I practiced constantly, until my fingers ached, but “constantly” started turning into “hardly at all” on the days when the pain was so bad I couldn’t even learn half of a new song.

When I was 13 years old I asked for a guitar for my birthday, and I got one that would fit me (not full size), and I thought I had found the world’s best instrument in those beautiful, metal strings, but it wasn’t long before I had to set it aside to take a break, when my fingers would give out on me and give way to more and more pain.

When I was 15 years old I ended up in a mental hospital because the anxiety had gotten so bad that I didn’t know any way to control it except by threat of death, and the pain in my joints didn’t bother me so much back then, even though I could barely write or draw or properly hold a pen. I didn’t care to tell the doctor about how I felt sick all the time, but when they sat me down, they told me all was well. Some teenagers just take life too hard and when I get older it’ll all get better.

When I was 17 years old I got so sick in January that I couldn’t even sit up or drink water, and every joint in my body was swollen and hot and I lost track of how many times I threw up, and when we finally went to the doctor a week after the worst of it had passed but the joint pain had stayed behind, she wrote in her notes that I was just lying. That I was just seeking attention in a world where all the attention was on somebody else, but I still could hardly walk and it took another week of drinking grape juice and eating crackers before I could finally hold down my food again.

When I had just turned 18 years old I went on a roller coaster ride because I didn’t want to be the only person too scared to go on it, but halfway through there was a pain in my body that I couldn’t quite place until I calmed down from the panic attack the ride had caused me. My shoulder cracked three times like the same sickening sound my neck made, and using my arm was a 9 out of 10 on the pain scale that day, and then I started to wonder if that’s what it felt like to dislocate.

This is the life of someone with Ehlers-Danlos syndrome. I’ve been sick since I was born, and I really don’t know any other way to be. The Get Well cards stopped coming long ago, or in my case they never even came, and people have a hard time believing I’m sick when I keep living my life, but they don’t see the little, isolated incidences where my days are laced with pain that would take an able-bodied person to the ER.

EDS can cause dislocations, chronic pain, anxiety disorders, panic attacks, stomach upset, migraines, and so much more throughout a lifetime, but EDS isn’t a virus that we get. It isn’t something that shows up as a teenager. It is a lifetime disorder. It is how we are born. Just because we might not look sick doesn’t mean we aren’t sick; it just means you’ve never seen us looking healthy because this is all we’ve ever known.

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Thinkstock photo by mood board