I have an invisible illness (well, not “an” invisible illness – I have what feels like a million invisible illnesses). I would like to begin by explaining in some detail what these illnesses do to my body that you cannot see.
What this means for me is daily dislocations of multiple joints and many more subluxations (subluxations are when a joint starts to slip out of place but doesn’t fully dislocate). No, I am not being dramatic. I and many other “zebras” with hEDS go about our days in constant pain from joints that slip and slide all over the place from the simplest of movements. If I’m not careful I can dislocate my shoulder just drying off after showering. By the end of every day my right kneecap has slipped so far out of alignment that I have to pop it back into place. My jaw subluxes nearly every time I eat. And my ribs move around so much that they often slide up on top of each other depending on how I’m sitting. Not to mention how frequently various tendons and ligaments slip out of place! So that’s one disease…
No, I don’t have a walker or cane (yet). No, I am not wheelchair-bound (yet), although I do use a wheelchair at times when going places that require a great deal of walking. The only things an untrained observer may notice would be my pain patch that delivers my pain medication that’s sometimes visible on my arm, the ever-present dark circles under my eyes or the clattering of the pills in my mobile pharmacy, a.k.a. my purse.
So when I say I can’t do something people are often flummoxed, and they unfortunately can get a bit judgmental. For example, I’ve heard stories about people genuinely getting mad when someone with a chronic invisible illness says they can’t walk a long distance because “they’re not in a wheelchair so they can do it.” These people accuse us of being lazy; “you can, you just won’t” or “you just don’t want to.”
You know what, they’re right about one thing in my case, and it seems to be something that confuses everyone: I can still do stuff. A lot of stuff! I am still physically capable of forcing my body to do a lot of things. But you’re darn right I won’t because here’s the thing: doing stuff usually hurts me. Pretty simple, right? And I think it makes a lot of sense, so I’m not really sure why I still get so much harassment when I explain this to people! But this distinction between can’t and won’t seems to be a big point of misunderstanding between people who are chronically ill and people who aren’t.
Pain is by definition bad, negative, the opposite of pleasure, something to avoid – so even if I am still physically capable of doing something, if it hurts me during or causes me extra pain afterwards, I’m not going to do it. I won’t. It’s not being lazy, it’s protecting myself. I don’t understand the jump made from I won’t to I’m lazy. Heck yeah, you’re right – I don’t want to do something that’s going to cause me increased levels of my already constant chronic pain, and I don’t deserve to be judged for that!
This has even been an issue in my experiences with doctors. They’ll look at me and see that I’m flexible and that my joints move well (move too well – thanks EDS), and assume that because my joints aren’t completely arthritic that I can physically do things, so there’s no problem. They miss the entire reason I’m there! I’m well aware I can do things, but it hurts when I do them and that’s not normal!
Also, just because I can walk doesn’t mean I can walk any distance. Just because a healthy person can run doesn’t mean they can run a marathon at any given time, and it would sound ridiculous for someone to ask that of them. So why do we make these assumptions and treat sick people like they’re criminals for standing up for themselves and for trying to avoid pain?
People get confused because I work (part-time) and I went to school and I spend time with my friends and my family. People see me doing an activity or getting out of the house and, sure, this implies capability, but they know absolutely nothing about the consequences. Here’s what they didn’t see: they didn’t see me have to nap after showering. They didn’t see me throw up then still leave and go to work (side effects – not contagious!). They didn’t see me make my mom stop at school to turn in a paper on the way to the emergency room. They didn’t see my parents have to basically coerce me into taking time off from work when I started taking a chemotherapy drug because I was too stubborn to. They didn’t see any of that and they don’t see any of the pain from any of the joint dislocations or any of the other symptoms. What they’ll see is a composed, smiling, normal-looking girl. And I like it that way. People don’t want to be around someone who’s constantly depressed, whining, crying and negative. I know that. That’s why I don’t let you see those moments of pain (unless it’s absolutely unbearable or I really trust you). Yet they still choose to sit here and judge me.
I’m going to tell all the healthy people a secret: we live every minute of every day in pain at levels you couldn’t even imagine. We could complain a lot more than we do. A lot more. We could say “I can’t” a lot more than we do. Heck, we probably should say “I can’t” a lot more than we do! I dislocate my joints and pop them back in like nothing happened multiple times each day, whereas you’d likely be in the emergency room. Not to mention all of the other pain and symptoms from all of my other conditions. And most of the time we’re still expected to function like you do. I’m not saying this makes you weak by any means or something like that. Pain like this should not be a normal part of anyone’s life. Nobody should ever be expected to get used to something like this, but unfortunately that’s where medical care for chronic illness is at this point in time.
But if we finally put our foot down and say we can’t do something (or that we won’t), please don’t try to tell us what we can and cannot do. It should be obvious that you don’t know what causes us pain because you’re not in our bodies, right? But apparently some people seem to think they know better than us. It’s not your place to judge and it never has been.
All we’re asking for is the same respect you give to healthy people or people with visible illnesses. It’s both a blessing and a curse to have an illness that isn’t normally visible. On good days, I can blend in and pass as a normal person. But this is disadvantageous at the same time, because one good day seems to indicate to people that I must be all better. They get really confused and sometimes really mean when I have another bad day. It just gets frustrating because if someone with cancer or another more well-known, more visible illness had a good day, healthy people would be ecstatic (obviously for good reason!), but would never make the assumption they were suddenly cured. And if they had a bad day the next day, they’d be distraught and supportive instead of defensive and downright rude.
But why does it suddenly become allowable to harass someone with an invisible illness like this? We’re still human beings and we’re sick as well. We already experience immeasurable pain every day. We certainly don’t need people passing judgment on us on top of everything else, especially when they have no idea what we’re going through! We deserve respect and kindness. It’s basic human decency.
So, yes, the people who think that me saying I can’t do something really means I won’t are actually right some of the time. But wanting to avoid pain is (in my mind) a most basic human desire, so I think my reasoning for saying I won’t do some things is pretty, well, reasonable! As someone with a chronic illness, I’ve found the distinction between saying “I can’t” and “I won’t” a finicky differentiation picked at by able-bodied people. I think saying I can’t do something that will hurt me is completely fair. If, while I may be physically capable of doing something, I will be caused great pain by doing it, I think saying “I can’t” rather than “I won’t” is appropriate. And when it comes down to it, what I can or cannot do isn’t really anyone else’s business in the first place.
It’s really not that complicated: just don’t be a jerk! Be kind to everyone and treat everyone with respect. That’s all I’m asking for! You never know what someone is going through that you can’t see, and the way you treat them may have a more lasting impact than you’ll ever know.
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