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What It Means When You Don't See My Pain

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I’ve been thinking a lot lately about the term “invisible illness.” During a hospital stay last year I had a discussion with a few other chronic pain patients about the benefits and drawbacks of living with a visible illness compared to an invisible one. Oh yeah, those hospital stays get crazy!

With a visible illness, one lady explained, you can never get away from it. As soon as anyone sees you, they see your illness. You’re immediately pigeonholed as the “disabled person.” With an invisible illness, on the other hand, you can choose who knows about your diagnoses.

While that’s true, the reality of living with an invisible illness is that people tend to assume you are just like everybody else and can therefore do everything just like everybody else. This means constantly having to explain why you can’t do something, why you get treated differently, etc.

Every morning (OK, five mornings a week) my little companion and I go for a walk. We often pass a couple also walking their puppy; the husband is a colleague of mine. As I said good morning to them last week it dawned on me that, to the outside world, the couple and I look just the same. We all get up around the same time, take our dog for a walk, go home for breakfast and then head to work. The husband generally arrives at work before me and leaves after me but that could easily be explained by the fact that his position is senior to mine. What nobody sees is the struggle it takes me to get out of bed each morning; that I’m not taking my dog for a walk, I’m walking because my knees and back demand it, it just so happens that I have a dog who also benefits from this routine. Nobody sees the exhaustion I face when I get home or the rest I have to take before, during and after I shower. Nobody knows that I used to be an early-to-arrive, late-to-leave worker but that my body simply won’t allow me to be that way anymore.

My point is, one of the reasons fibromyalgia is an invisible illness is because we try so hard to be healthy and do things just like everyone else that in doing so, we make our illness invisible. When my fibro was at its worst it was visible to the whole world. I couldn’t sit or stand up straight, my shoulders were permanently hunched over, my head hung low. My knees couldn’t bend so I shuffled along slower than a tortoise. My immunologist described it best: “You looked as though every part of you was in agony.” Even now I might limp when my knees are having a particularly bad day and walk slower when I’m more tired than usual. At times you will see me with a heat pad stuck on the back of my shirt, or TENS machine wires sticking out of my top. It’s on these days that other people can see my pain. But it’s not only these days that I feel it.

If you can see my pain it’s because I’m in agony and no longer have the strength to hide it. If you see me and don’t see my pain, it’s still there, it hasn’t gone away, I’m just managing it better.

I constantly struggle with not wanting to be known as the “sick girl” but also not wanting to have to explain why I can’t do certain things. Being the “sick girl” gives you an out. People might not know or understand the details, but they also don’t question when you turn down an invitation or say “That’s just too much for me right now.” Looking healthy and turning down invitations brings questions. Why do we find it so hard to accept another person’s right to say no?

Originally published: October 3, 2016
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