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Riding the Roller Coaster of Fluctuating Disability

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When people think about disability or chronic illness, they tend to do so in a very black and white sort of way: Either you are completely disabled, or you are not — this is your permanent status, and your disability (or lack thereof) will affect you the same way today as it will tomorrow.

Were it only that simple.

Such black and white rigid idea that we cannot be differently affected on a daily (or weekly, or hourly) basis is, frankly, entirely asinine. Even when you’re completely “healthy,” your day-to-day experiences of life are never so stable and rigid. For example, it’s entirely normal to maybe feel a little more tired some days, or to feel a bit more stressed. Anyone can experience these sorts of fluctuations, is it really such a foreign idea that illness and disability can fluctuate, too, and affect someone differently day to day?

There are so many ways that an illness or disability can fluctuate, so many ways that the effects of such can change. But when you do have a fluctuating illness or disability, it often comes with many of the same pitfalls of a hidden disability. Judgement from those uneducated in the realities of disability, high expectations that are realistically beyond your capabilities, assumptions from others.

There are days I will be struggling to get about with a pair of gutter crutches, and a few days later I’ll be managing with one, or using only a cane. It’s assumed by those who have little experience of chronic illness or disability that I must be getting “better,” therefore I must be able to do more, and I will continue to get better.

So what happens when, the next day, you’re back to using both crutches, or a wheelchair?

Do they understand that the day before had simply been a good day? Do they know that because of that good day, you probably overdid it by taking on more and are now suffering the consequences? Or will you be met with sideways looks and, “I thought you were getting better?”

A colleague recently said to me, “Your movement is better each time I see you.”
I realized I had a choice of how to respond — I could smile, and agree, and pretend that my disability was getting better. Or I could be honest. Usually I would mask and take the first option, but that day I went with honesty, and said, “Well, on good days.”

I didn’t know what to expect, but I don’t think it was his look of utter disappointment and a quiet, “Oh.” It was as though I had let them down, that I hadn’t met some sort of expectation.

There are a lot of erroneous and misguided perceptions when it comes to disabled people, and on top of that there is a role of “disabled person” to be fulfilled, which comes with certain expectations that are placed upon disabled people in order to be perceived positively and socially accepted. Disabled people are expected to 1) cope cheerfully and positively accept their role as disabled person; 2) pull ourselves together, minimizing the effect of disability on our activities and colleagues; 3) strive to improve our condition and “get well” (if you think this seems diametrically opposed to expectation 1, you’re not the only one); 4) look after yourself with as little support as possible; 5) focus on recovery to return to or maintain employment (Safilios-Rothschild, 1970).

But the nature of chronic conditions is in the name: they are chronic. They are continuous and always. Fluctuating conditions are the same — they are always present, but the severity and manifestation of them changes. This doesn’t mean they’ve miraculously disappeared, but that they ebb and flow, ever present. There isn’t “well” to get. To those without the experience or exposure to this, this is an entirely foreign concept. For them, illnesses are temporary. You get sick, or you get hurt, then you get treatment, and then you get better. The idea that there is no real getting better doesn’t make sense — even when they might be aware of it cognitively, that doesn’t necessarily extrapolate to truly understanding it.

“I thought you were getting better?” can hit like the pointy end of a very sharp sword sometimes. It feels accusatory. Like we’re being accused of not trying hard enough, that not getting better is somehow a personal failing, or even that we’re maybe just pretending that we’re as bad as we are for that imaginary disabled bonus that many non-disabled people believe to exist.

Perhaps we just don’t want to get better, right? But trust me, if there’s better to get, we would. That’s why we take advantage of whatever options are available to us. It’s why we try to make the most out of the good days, sometimes even to our own detriment.

Fluctuating conditions are also shockingly unpredictable, especially at first, when you don’t know what will trigger a flare or are not yet experienced enough to recognize the warning signs. One day you may feel quite carefree, you might even feel energetic, or your pain may be the lowest it’s been in months — the next day you can feel like you’ve been hit by a truck. This unpredictability and uncertainty only adds further to the burden of disability.

Planning ahead becomes difficult, as there’s little certainty that your plans will still be achievable when the time arrives. You may have to start cancelling plans, which can leave you feeling flaky and unreliable, especially when those plans were with someone that saw you on a good day recently. Your needs can change drastically day to day, or sometimes you’ll have a spell of stability only to be thrown completely for a loop. It can be difficult to know what accommodations you might need, and guilt inducing to receive an accommodation that you only need sometimes (in part this is due to internalized ableism and the idea that anyone should be able to simply manage themselves regardless). It’s discouraging and isolating, especially when you feel that you can’t make plans simply because you do not know that you’ll be able to carry them out. It all has an impact on your work life, your home life, your social life. It’s really all hard enough without having to explain or justify ourselves constantly.

It’s really simple, to be honest: some days are good days. And some days are not. Just like anyone else. It’s just that for some of us with fluctuating conditions, the differences between those days are more marked.

Getty image by Elena Nichizhenova

Originally published: April 10, 2023
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