Not knowing why my body was failing me was one of the most trying experiences I’ve ever experienced. I questioned everything. And everyone questioned me. I would stay up at night and wonder if I did this to myself somehow. I would question if my pain was really real. Doctors would write me off as anxious and emotional. My friends began to fall away, thinking I was faking. For years, I lived in this world of invalidation and defeasance and dissolution. My body was failing me, I knew that, but I didn’t know why and without a cause there’s not much to help.

For the first time in years, I feel a wave of relief wash over me. For the first time in years, doctors aren’t writing me off. This week for the first time a doctor told me “your pain is real and we can do something about it.” For the first time since I became ill, I have a name for the thing that broke my body. Ehlers-Danlos Syndrome.

What a strange feeling it is to be happy about a medical diagnosis. Especially one with no cure. But boy, am I happy and relieved and at ease. How I see it is, with this diagnosis I wasn’t given all my symptoms, I already have those, now I just have a name for them. It also didn’t bring a cure or really much treatment but it brought closure.

After years of searching, we have answers and answers are so valuable.

I’m not saying I’ll never run into people questioning me again, that’s simply inevitable but I can stop questioning myself.

This whole battle of not knowing wore me down, it wore my spirit down. Now I’m ready to start the next chapter. A chapter of validation.


This Spotlight post was written by Ellie from The Superhero Project and As Ellie