I can’t speak for the opinions of society as a whole, but I can give MY opinion on what I see from the people around me. It seems healthy people’s views on chronic illness is pretty darn black and white; you’re either bed-ridden, crippled and unable to participate in basic daily activities without help OR you’re fine, in a bit of pain but if you just suck it up and take an Advil, you’ll get on just great.
What about those of us (and there’s a lot of us!) that fall into the ‘forbidden’ in between area? Sure, most of the time, it’s completely invisible what we are dealing with on the inside. Sometimes it’s visible, but it’s just not enough to be deemed a real problem. Sometimes it looks like we’re able to do everything just normal, but little do others know, almost every part of our daily life is altered just a bit to make us be able to get shit done.
As anyone that’s been following the last couple posts knows, I’ve been hard at work on some home renovations. I had been blessed with some good luck (or good cocktail of meds) that had made it so that my lupus symptoms are milder than they had been in over a year. I have been ABLE to do a lot of things that under worse circumstances I would have never even attempted, but that doesn’t mean I’m completely able bodied and it doesn’t mean I’m doing everything in the most functional or practical way. Not even close actually. On top of that, there are things that I still just can’t do, or can’t do because I already did something else (spoon theory for individual body parts).
When I started the project, I was feeling the best I had felt in a long time but I still functioned differently. I held the drill/driver ‘wrong’ (on purpose by the way). It was easier for me to scoot around on my knee pads or butt instead of repeatedly getting up and down. I had to repeatedly switch what tasks I was doing because particular body parts wear out very fast. I had to take my pain meds round the clock, because yes even though I felt better, being physically tasked is painful. I had to wait for help with things that I knew would put me out of commission completely. I’ve had to curl into incredibly awkward positions because something pulled a muscle wrong or my gut decided to shoot pain through my midsection. I’ve had to leave projects half done for the day because I’m simply too exhausted and sore to continue on.
Not much about my participation in this DIY project was actually functional, but it doesn’t mean I couldn’t get it done. At the same time, the fact that I COULD get it done doesn’t mean I’m able-bodied or healthy.
Our friends joked about us starting a company on the side, helping others build their decks or fix their gardens and before I could even think, a “fuck no!” slipped out of my mouth. The sentiment is great and all, they think we did a good job, but anyone who has to count spoons, or anyone that saw how much of a struggle some of it was for me, would never assume it’s some simple way to start making some extra cash.
While normally I would have apologized for such a rash and harsh response, one of them went on to ask about lupus being a mis-diagnosis because OBVIOUSLY (seriously!) I was doing fine. Sure, I think they didn’t say it to be rude. If anything it was a compliment that I had been so ‘functional’, but I’m not going to lie, it hurt and it pissed me off. I don’t feel it’s right to be judged that because one can still accomplish physically difficult tasks once in a while, or when needed they must not be really ill at all.
I know I shouldn’t let it get to me, and I know that from the outside perspective, it must look like everything was done just right, normal and easy. That’s the funny thing about dysfunctional things. A lot of the time, until you take a closer look, everything seems to be running like it’s supposed to. Until something finally breaks, we go on using it like normal, or expecting it to work like normal. When this is the case, the end result is almost guaranteed, eventually it’ll stop working all together.
On the opposite side I know Mr. Mango half jokes about getting a handicap parking pass or registering to start getting home therapy equipment to make certain difficult tasks easier. He jokes, but I do think he’s serious, at least on my worst days. He knows how difficult some tasks are, he knows how much of a struggle I have on bad days just to do basic things like brush my hair,change Little Dude’s clothes or walk from the house to the car. That’s the thing, some people see completely healthy and others see how much pain and trouble it can be.
That is why those of us with dysfunctional bodies have to be careful. We have to count spoons, we have to modify our physical activities, we have to monitor our bodies carefully because we know how easily dysfunction can turn into no function at all. Even then, it’s sometimes unpreventable.
I’m aware that at some point in my future it could and probably will get to the point where I’m no longer in this in between category, but I’m not there yet. I’m not disabled, I’m not able-bodied, I’m physically dysfunctional.