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.

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.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by mood board


Find this story helpful? Share it with someone you care about.


Related to Ehlers-Danlos Syndrome

To Those Who Will Never See My Worst Days With Ehlers-Danlos Syndrome

Almost none of you will ever see me on my worst days. My most vulnerable hours are saved only for my hero husband, and even he will never really understand. When I’m in a flare, I wouldn’t think about leaving my house… or my bed or couch. I can’t handle any movement: no walking, let [...]
woman in white hat, jacket, and mittens stands outside enjoying the snow

5 Things I'm Thankful for as Someone with Ehlers-Danlos Syndrome

November is that time of the year when we all do two things: we either feel sincerely thankful for what we have in our lives, or we at least ride the social media wave of “thankful” posts. I’m not saying these things don’t come from an altruistic place. I truly believe that even if this is [...]
young woman putting cap on her head

4 Life Lessons I've Learned From Having Ehlers-Danlos Syndrome

From all outward appearances, most people would never know I had a rare genetic disorder. I work a full-time job as a director for a public library. Standing in front of you, I give no outward appearance of having anything “wrong” with me on most days. I lead a full life with a loving partner, [...]
doctor talking to patient sitting on exam table

The Things I Wish I Could Tell My Doctor About Ehlers-Danlos Syndrome

Over the last few weeks I have come up against the joys of the National Health Service again – the most tricky of these services seeming to be the good old general practitioners. Yes, that’s right, those smiley happy (usually) pointless people that you have to deal with every time your health takes a turn. [...]