To the Inadequate Doctor Who Doesn't Understand My Illness


A note to my inadequate doctor:

Ehlers-Danlos syndrome (EDS) is a genetic disorder I will have for the rest of my life. I will not be completely healthy by the time I turn 29 due to just medication and physical therapy. 

EDS feels like the day is over, before it’s even begun.

EDS does not know negative vs. positive emotions. It only knows the constant state of pain it’s going through.

EDS does cause depression, but speaking about the realities of EDS should not make me seem “negative” or as if I’m “spiraling downwards.” 

EDS is not your life, it’s mine.

EDS has never known you. You were not born with it. 

EDS shows compassion to those who don’t have it, while you give no compassion back to the ones who need it the most.

EDS is not running through your entire body, it does not dictate how you can or cannot live.

EDS is not your life, so why do you tell me how I should live with it?


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