Please Know We’re Trying

24 Apr

I’ve written before about “passing” (see my suggested reads at the end of this article), what it’s like when we try to hide our symptoms or conditions, and this is something those of us with hidden or visible disabilities often do–but there’s something else we do besides pretending to be better. We also work our butts off to actually *be* better.

We do it for the people around us, because we worry about ruining the fun, cutting time short, limiting activities, hurting feelings, or disappointing them. We worry about making people sad.

But we also try for ourselves, because we want to feel better.

I, personally, try my butt off to not be in so much pain, to not be debilitatingly tired, to avoid dizzy spells, to feel good in my clothes (confident in appearance and comfortable in the environment). I work very hard to avoid stomach issues, which might mean intense pain, unsightly bloating, embarrassing trips to the bathroom, or torturous waits when one isn’t available. I also don’t want people to dislike me because of my emotional symptoms or my inability to do something.

Like so many, I try to do all within my means (with the tenuous balance of not overdoing it) to be better. I research the heck out of nutrition and vitamins and try to adhere within a tight budget and a love for potato chips. I often pass up my favorite foods. I carry snacks and ibuprofen, a ThermaCare patch, and a lidocaine patch in my purse. I bring a lumbar pillow to the theatre. I use my whole heart and creative writing degree to come up with gentle, pseudo-honest excuses to budget my social time or avoid an event I don’t think I can physically handle. I buy shoe inserts and clothes a size too big (confession: they fit now…).

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At home, I do stretches and exercises, dangle from my inversion table, use ice and heat regimens, apply aromatherapy and balms. I limit my jigsaw puzzle time. I sleep when I can. I fast before a trip or event. I constantly think about what might happen or how to feel better. I worry and I plan as much as I can. It’s my way of life, as it is for so many, and likewise, thankfully, I’ve gotten pretty good at it. These conditions were given to me, and I own them, and thereby it’s me who must “own” them.

So as much as I need you to know I’m going through something, I want you to know how hard very I’m trying.

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