Disability and my sense of self
In the weeks after I discovered I have a chronic illness, I struggled with whether or not to tell anyone about it. At first, I told no one beyond my family and my closest friends. I was embarrassed that there was something wrong with me, and I wanted as few people as possible to know about it.
As the months progressed and my illness worsened, I realized that keeping my condition a sort-of secret was neither feasible nor useful. I needed people to know that when I missed appointments it was because my body wouldn’t cooperate. As much as I resented needing to make this excuse, it was unavoidable.
Slowly, necessity turned into a kind of activism. I started to want people to know that I have endometriosis. I wanted my disease to be visible. I wanted people to know for my sake, for their sakes, and for the sake of women’s health issues in general.
That said, I still resent the change.
I wish that the chronic aspect of my illness would evaporate and that the last year or so could be an eye-opening experience that’s all in the past tense. I’m fine with what has happened, but I want this episode of my life to come to a close.
My problem is not knowing how much to let the disease into my identity.
If I give endometriosis too much space, it feels like it takes over. It seems to define all that I am—both in myself and to the people in my life. On the other hand, if I don’t let the disease into my reality enough, I can’t find acceptance of my situation. And I want to make peace with this. I need to.
As with most things in life, it comes down to finding a balance.