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I Am What Ehlers-Danlos Syndrome Looks Like

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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

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