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I Am What Ehlers-Danlos Syndrome Looks Like

Receiving a diagnosis for Ehlers-Danlos syndrome is only the first step in what often feels like a never-ending cycle of questions, appointments, tests, more appointments (with long wait times), and then more waiting. So much waiting…

Have I mentioned the waiting?

Looking at myself in the mirror the day after my diagnosis, it occurred to me that while I had an answer, a verification, an acknowledgment of my frustrations, I did not look any different. It was still just me staring back from the reflection in the glass.

It didn’t take me long to tire of trying to explain at various appointments what Ehlers-Danlos syndrome means, what my concerns are for that particular visit, and to realize I would still receive doubt and dismissal from people even with my official diagnosis. Because I don’t “look sick” on the outside, I need a way to explain what living with EDS means for me.

Ehlers-Danlos looks like:

  • Random anxiety spiking for no discernible reason.
  • Feeling weak if I admit to feeling anxious.
  • Being overwhelmed and teary-eyed because I am tired but still have so much work to do.
  • Brain fog when my job requires me to be sharp 24/7.
  • Not wanting to slow down in case I can’t rev up the energy again.
  • Disinterest in food but having to eat.
  • Recalling the time I confided in a coworker I was very clumsy then being told that it would get better if I just “slowed down” more. No, she wasn’t a doctor, just a jerk.
  • Being exhausted at 6:00 pm then unable to sleep at 10, 11, 12, 1…
  • Falling asleep but waking up again and not being able to find a comfortable position to go back to sleep.
  • Being proud of myself that I wrestled a 360 mattress cover onto the bed, then my joints hurting for two days.
  • Cycling through the relief of finally having a diagnosis, then having the whispering voice in the back of my brain telling me someone will “take it away” from me.
  • People questioning if I have the right diagnosis — even doctors.
  • Thinking people won’t believe me because I cannot prove it with a test.
  • Not knowing if I can talk about this in my everyday life.
  • Then not knowing who I can talk to about it.
  • Wondering if I find someone with EDS, if they will measure their EDS against mine and dismiss me because they have it worse. Why must people always measure?
  • Having so many questions and no one to talk to who can answer.
  • Wanting to embrace my diagnosis but mentioning it to people who promptly dismiss it like you never said it, while you’ve tried hard to be engaged and interested in their health issues.
  • Realizing I have a diagnosis but don’t know where to go from here.
  • Second-guessing myself on any decisions to move forward and dreading the process.
  • Feeling alone because this diagnosis feels revolutionary to me, but no one else gets it… or cares.
  • People turning any conversation about my diagnosis into, “Well, I have that. I’ve had that. That’s not a big deal. Lots of people have that. I wonder if I have EDS since I have that symptom.”
  • Others measuring because people compare their chronic illness to yours, claiming they have it “so much worse.”
  • Fighting to continue the same way of life because I don’t want to be viewed as weak and trying to prove I can still do all the things.
  • All the well-meaning people who tell me to give myself grace and to listen to my body, then turn around and give me a list of things they need and want ASAP.
  • Once again desperately wishing for someone to talk to about it while also not wanting to talk about it.

But most of all, Ehlers-Danlos syndrome looks like… me. Average, blending in on the outside but tired and scared and anxious on the inside.

What does EDS look like for you?

Photo provided by contributor.