What is the real burden of chronic illness?

Photo by h heyerlein on Unsplash

The shared burden

In his response, I can appreciate that Appiah was making “a distinction between what an early acquaintance required of us and what a serious relationship did” when it comes to putting care-giving responsibilities into context. It is true that chronic illness doesn’t affect us in a vacuum: our loved ones share in the experience. They have to live with chronic illness by bearing witness to what it does to the person they love. And they must learn what their loved one’s condition requires and how they can offer meaningful support.

More than that

One of the most complicated and distasteful parts of chronic illness is pity. To be seen as nothing more than an illness is condescending and dehumanizing. That is why I and so many others like me talk about “living with chronic illness” — and not “having it” or over-identifying with it to the effect of self-negation (“I am an XYZ patient”).

The opposite problem

I don’t want to be reduced to just my illness, but there’s also the opposite burden: that of not being taken seriously. It’s a similar insensitivity that allows people to see the chronically ill as nothing more than an illness that allows them to not take their condition(s) seriously.

Pity or dismissal?

My struggle is figuring out how to straddle these two burdens: of not being seen as just my illness and of my health experience not being taken seriously. I live by the credo that what other people think is none of my business, but when I interact with the world — and more specifically with family, friends, neighbors, colleagues, and acquaintances — I keenly feel the burden of being seen.

This is really about you

The burden of chronic illness is heavy — maybe not heavy in the same way all day every day, but it’s ever-present. I say that with as much neutrality as I can muster because it’s a fact I’ve learned from my experience with trigeminal neuralgia.

freelance writer & editor | writing coach | chronic illness advocate

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