I don’t really know how to explain this concept, so bear with me: I get frustrated with the idea of healing and getting healthy. As a person with cystic fibrosis, I’ve spent a lot of time wondering what’s wrong with being sick?
No, I am not saying that having a broken body is better than having a properly functioning one. Trust me, all the birthdays and trips I have missed because of an unexpected hospitalization have shown me how important it is to have a reliable body. But, that’s not to say my body isn’t worthwhile, too.
I think the most exhausting aspect of being chronically ill is having to defend my body’s worth. And sometimes, that is accepting my body at its current state -- bleeding and infected lungs, too.
Unfortunately, not everyone can appreciate that. Whether that’s the umpteenth card from a friend that is marked “get well soon!” or public health policy that uses words like “comorbidities” and “vulnerable people” to describe people with chronic illness, there is an underlying message that I’m not allowed to be sick. Or really, my body isn’t allowed to exist as it is, which is really hard to change when you have little control over your body. I think the narrative surrounding disabled bodies comes from an ongoing history that has tried to shut us out of the picture and a current reality that makes access to health care unnecessarily difficult. Eventually, that culminates in quite a lot of shame and limiting beliefs -- for me, and for the world looking in.
I can’t force people to care about my life as a vulnerable person. But I can tell my story and put a face to those living with chronic illness while also building a better narrative surrounding sick life. While I know storytelling won’t fix the infrastructure damage within our system, I do think it can be powerful in bridging the distance between able-bodied folks and the chronic illness community.
I want the world to accept me and my body as we are -- without the expectation that I get healthy.
Able-bodied folks distance themselves from my reality because it forces them to address their own bodies. But in reality, all bodies break down and it often comes unexpectedly. So, it only makes sense to frame chronic illness and disease as something we are all a part of.
Words like “she is too young” or “she is such a good person” are attempts at denying death and assuming death only happens to certain people. But it happens to us all, and we’re all afraid. We don’t know how to act because our society has created so much distance that we feel unhinged when it happens. I think for all of us -- chronic illness or not -- embracing our beautifully bodies’ inevitable passing, would help us become more cohesive.
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