You Know You Have Ehlers-Danlos Syndrome When...

After three of my kids and I were diagnosed with Ehlers-Danlos syndrome type III (hypermobility), I knew that I had to instill a good attitude about it in my children so they wouldn’t grow up bitter about their condition. What better way to do that then to laugh about it? So, for my kids (and all you other zebras out there!), you know you have Ehlers-Danlos syndrome when…

1. Your joints go out more than you do.

2. You snap, crackle and pop just like your favorite breakfast cereal.

3. You spend 15 minutes drooling over all the braces in the pharmacy department at Walmart.

4. You visit the local nursing home and find yourself jealous of the residents’ tricked out walkers.

5. You can dislocate or sublux a joint while just sitting there doing nothing.

6. You can dislocate your thumb by pulling up your sock.

7. The ER doctor has to ask how to spell your disease and then Googles it.

8. Your geneticist uses you to teach other doctors how to run the Beighton scale on patients and diagnose EDS.

9. You have to pop a few joints back into place when you wake up in the morning.

10. You have “brace lines” instead of regular tan lines.

11. You can only regulate your body temperature about as well as a newborn.

12. Brain fog means that you have to write down everything.

13. Your 2-year-old gently touching your leg can make your eyes well up with pain because your entire body feels like an intense bruise.

14. An itch on your back is never a problem because no matter where it is, you can reach it.

15. Your friends look at you like you’re speaking another language when you rattle off big words like “Ehlers-Danlos syndrome” “Eosinophilic Esophagitis” and “Postural Orthostatic Tachycardia Syndrome.”

16. You live in fear that you’ll get pulled over and have to take a field sobriety test because there’s no way you’re capable of walking a straight line.

17. You’ve ever heard “it’s all in your head.”

18. A trip to the dentist means your jaw will be at least partially dislocated and sore for a while.

19. You’re obsessed with anything that’s zebra print!

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

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

Related to Ehlers-Danlos Syndrome

sunset over mountains

Why I Love Sunrises and Sunsets as Someone With Ehlers-Danlos Syndrome

Something I get a lot when I explain my condition is, “Wow, I don’t know how you do it…” But I don’t have a choice. I have to do it. It would be really cool if I didn’t have to do it, but I do. With a disease like Ehlers-Danlos syndrome it is really easy [...]
girl standing on cliff overlooking ocean with her arms outstretched

Why I'll Talk About Anything Except My Ehlers-Danlos Syndrome

I do not want to talk about this.  No, I mean it. I really don’t. I will talk about other vulnerable things all day long.  I will talk about my struggles with anxiety, depression, mania, suicide, and hospitalizations, you name it. I will talk about dropping out of college — twice. I will talk about [...]
Sad girl looking out of window

I Shouldn't Be Embarrassed That My Life Is Ruled By Ehlers-Danlos Syndrome

I am embarrassed by my life. I am 25 years old and I still live with my mother. I still depend on her to drive me everywhere because I can’t drive myself. I depend on her to support me financially because I cannot work and support myself. I wasn’t able to finish college because the pain and [...]
bandages on woman’s hand

To the Hand Specialist Who Acted Like He Was the Judge and Jury

I’m still processing our first important appointment we had a couple of months ago, and I thought it might be helpful if I articulated my feelings during and after our meeting to let you know why I won’t be coming back. I arrived in your office a sunny day in late winter. I was dressed [...]