The Invisible Costs of Chronic Illness

If you've never heard the term "invisible illness" before, the basic idea is that it's an illness or disability that doesn't have an easy visual signifier—like a wheelchair—that lets people know right off the bat that someone is dealing with a health challenge impacting their life. This leads to things like people using necessary accessible parking being called out for "faking it" or "taking the spot away from someone who needs it" and other judgmental BS. This also leads to people judging every other choice those with invisible illnesses make, and often resenting us for those choices. (Fun, right?)

But, actually, that isn't the kind of invisible this post is about. Instead, it's about all the "invisible" stuff surrounding life with a chronic illness, regardless of whether some part of our condition has an external marker for strangers to see.

While it's upsetting and stressful to constantly have to justify our behavior to strangers, people with chronic illnesses also have to consistently justify our choices to the people in our lives who either don't understand or choose not to engage with what it means to be living with that illness. Their (willful or naive) blindness keeps even more of our illness invisible.

There are some great resources out there, like the Spoon Theory and the Matchstick Theory (the original version seems to be down/gone, but the idea is that—unlike a spoon—a match is used up, literally destroyed by using it). As a community, we try to explain so healthy people can try to understand, if they're willing to make that effort which actually most people are not. Ignorance is bliss, after all. 

But you're here, and you're reading this, so I'm going to assume you care to try.

One of the pieces of having a chronic illness is that it constantly seems to the people in our lives that we "choose" to do one thing but not another—with the associated judgment that the "other" thing must therefore not matter to us. Sometimes that means showering but ordering in instead of cooking. Other times it means coffee with one friend but not drinks with another. And we do choose—paradoxically because we don't have a choice. 

We can't do both, or all, or often even half of what we want to do/what is expected of us, so we're forced to pick. 

The thing is so are you—but you get to do, say, 10 things, so it's hard to understand that we only get to choose 1. After all, we have the "same" 24-hour day, right? 
Hint: No. No, we don't. 

Our choice isn't made to offend you (usually—life is life). Often, each one is a complicated equation: How many "spoons" do we have? How long will it take to recover from activity X? What do we have to do the next day, or in that week? E.g. do we have clean clothes, or does laundry really, really, really have to happen today? Which activity/event is time-sensitive? Which person needs us more right now? And many other pieces all go into an equation that's still ultimately based on a guess—because with many chronic conditions, our health can dive off a cliff without any warning. So the equation can end up completely meaningless without any warning, and generally that happening sucks much more for us than the mild inconvenience does for you. 

That's the other side of "invisible": it isn't just that you can't tell I'm sick by looking at me; it's that you don't see either the reasons I don't participate in an activity or the costs of participating. If I cancel at the last minute, you can (usually) just go and do something else. But I am probably stuck with all the symptoms of a "bad day" (an understatement). 

In some cases, I'm also stuck with the resentment from people who choose not to understand why I decline invitations or cancel last minute, why I'll do X but not also Y—with the "also" silent in their perspective, because they could do both and more while feeling fine. That "also" is a critical part of the equation, however. I have to choose one thing, but not two. Someone else may be able to do four things, but not five. And it varies a little bit by day, making the equation even more complicated—but no less invisible to the people around us. That invisibility can make our choices seem arbitrary, when they are anything but. And no, we can't "just make an exception" because...

The flip side is we also have to deal with the consequences of choosing to participate in X activity. Even the people who appreciate my prioritizing spending time with them, spending my limited "spoons" on that as opposed to anything else I could try to do (write, read, shower...), don't see the cost of doing so. That's simply reality: they aren't there in my home seeing the consequences. So, most often, they don't think about the fact that those consequences exist. They move on with their lives (as they should!), but that leaves yet more of the reality of chronic illness—of my life—invisible to them. As a result, even more of what they do see ends up being judged.

As Rachel Allison wrote
"When you see me I’m put together. My makeup is done, my hair taken care of. I’ve learned all of the little tricks to look the most presentable with the littlest effort. I’ve learned all of the little tricks to act normal despite an abnormal illness. I’ll smile, even if I’m in pain. I’ll sit quietly while my body yells at me. I do this to fit in. I do this to feel normal. I do this so others don’t have to focus on an illness they don’t know how to respond to... You haven’t seen my worst days. Because I hide them from you."

To use a recent example, a while back I got to see a  friend who lives out of town, which was wonderful. I made it out of the house (big deal lately), I got to participate in celebrating a life event (almost like I'm a real human being participating in normal social functions), and I got to spend some time with this friend. All really great!

It helps that this friend does understand, and yes, not also having to deal with toxic emotional backlash like resentment/guilt trips means chronically ill people will often prioritize those in our lives who do/try to understand. That's part of the equation. 
To quote Rachel Allison again:
"There are few places I will go on a bad day, fewer still on a terrible day."

Here's the piece people don't think about, but we still have to: that was the first thing I did that day (an alarm woke me up, I got dressed, and I went). I lasted there about an hour and a half, which means about 2 hours with travel time. Then I got home, ate something, and ended up passing out (colloquially) for about 4 hours. Then I had a snack and got ready for bed. Not because I had slept particularly poorly the night before (for me), and not because we met early in the day (we didn't), but because that was all my body could do. Essentially, that hour and a half of socializing was my whole day. And that wasn't even a "bad" day.

Or as Angie Ebba wrote in her post The Stigma of Fun When You're Disabled:
"'For the most part, no one outside your own bubble sees the true price disabled people pay for these moments of happiness: all the extra costs, and planning, and arrangements, and anxiety, and pain, and fear.' They especially don’t see the days of recovery that might follow a disabled person allowing themselves even one little thing that the able-bodied take for granted."

I'm lucky that on that day I got to choose, meaning I didn't feel so unwell that going just wasn't an option. But my point is the invisible cost of my illness goes beyond people not understanding that yes, walking 10 extra feet can really make a difference in my life. It goes beyond not being able to travel for hours to join in celebrating your life event, no matter how much I might want to. It plays into every decision I have to make—and part of the equation is knowing I will have to pay a price for even "low-key" activities.

Consider how stressful a complicated decision can be. Now imagine that every single decision, from things like showering & laundry to whether you can attend an event or manage to read a book—or, you know, work—has to undergo this complicated short- and long-term cost–benefit analysis. Every decision, every day.

These are things anyone with chronic illness, visible or otherwise, has to deal with. Pieces of our reality which remain invisible to most of the people in our lives—really, anyone who doesn't live with us, and sometimes the people who do. We get really good at prioritizing because we don't have the luxury of doing otherwise. And we pay a price for every choice, whether we lose relationships from not participating, or "lose" a day for an hour with a friend. These invisible tolls of living with chronic illness can be even more significant (and debilitating) than the BS judgments of some stranger who'd rather everyone disabled came with a visible warning label, partially because even people who do care about us just don't get it. It's extremely isolating.

The constant background hum of having to balance the equation is draining enough without having to justify the results. Unlike an actual mathematical equation, we can't just write it out for you—which doesn't make it any less real or important. 

You also do not have to constantly worry about either our specific equation or the costs of our choices. Just give us the respect of letting us decide our own priorities, while recognizing that our equations go far beyond the simple questions of: "Do I want to do this?" and "Do I have the time?" And remember that the limitations of our lives—the ever-shifting boundaries that you can't see—don't mean we don't care about you.

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