When Your Chronic Illness Makes You Feel Half-Visible

I had a conversation with someone recently. When I told him I was exhausted and in too much pain to continue our conversation, he rolled his eyes and said he was tired, too. I’m not the sensitive, wilting flower type. It takes effort and intent to offend me or upset me most of the time. But this upset me. You see, my disability is invisible — I have Ehlers-Danlos (EDS), Type III, fibromyalgia,  depression, anxiety and CPTSD. My EDS is not to the point that I dislocate from sneezing (most of the time), and I look, for all intents and purposes, like a healthy young woman.

This person knows I have a disability and how it affects me. But he still seemed to assume I was just experiencing a bad day like he was. It was on the tip of my tongue to tell him his bad days are likely my good ones. At best, I have a few hours’ activity spread out through the day before I am finished and need to rest. I’ve told him that, but to him, I still “seem” healthy. For some reason, he doesn’t want to look deeper than that or try to understand that, I am, in fact, ill.

Like many folks with a disability and pain, I minimize what I experience when talking to others. I smile and tell people I’m fine. I laugh it off. I keep my mouth shut when I hurt or can’t do something and suffer in silence, and I often just do the thing I really shouldn’t do anyway. Why? Because I’m not sure what’s worse: the results of overdoing it or the attitude I receive from people when I don’t.

I look “healthy.” And for the most part, I am. I am at a good weight for my height and a decent amount of lean muscle from many years of martial arts, water skiing, horseback riding, hiking… all the things I grew up doing and loving that I can’t do now. But that kind of active life leaves a mark on your physique that pain and inactivity don’t erase in its entirety.

I straddle this awkward line in life where I’m only half-visible. Sure, people see me at the grocery store, at church, or engaging in the few hobbies I’ve clung onto, but they’re only seeing pieces. From those pieces, they build assumptions. They build ideas. We’re all like that, really. Unless we live with someone (and sometimes even then), we’re left with puzzle pieces we have to fit into a whole.

For many people, those pieces are pretty easy to assemble and come up with at least a good image. They might not have everything, but the image they create reflects the pieces they recognize. The pieces they know. For others, it’s a little more complicated than that because the real story, and the real difficulty, lies in what they don’t see.

For me, what they don’t see, is the constant pain and exhaustion I fight through. The moments where I say, “I don’t care how I’ll feel tomorrow, I want to do ‘x.’” They just see me doing whatever it was.

Many of us have people in our lives for whom our disability is something that gets in the way of their plans and desires. If we miss events too often, they become angry or say rude things. If we tell them we’ve hit our limit (I’m out of $^&*ing spoons), they think we’re just not trying hard enough or maybe are too weak to handle it. Those people aren’t going away.

I wish they understood that what they see is just the tip of an iceberg. If someone, particularly someone you know to be honest and genuine, says they’ve hit their limit and are done, you should listen to that. Watch for it. Being sarcastic, dismissive or rude to folks who can’t do any better won’t help anything. In fact, it makes you somewhat of a bully, even if you don’t mean to be one.

For those of us, and there are many, who live as icebergs; whose pain and whose disability lies beneath the surface; who smile and laugh when they want to lie down and cry; whose friends and family only see small bits and pieces of what they experience — you aren’t the only people adrift in the ocean. It’s difficult for those with chronic illness to connect, and it’s hard to find peace and solace. It’s hard to tell friends and family, “Not today, I’m sorry.” It’s even harder when those people roll their eyes, scoff or ignore your limitations.

Don’t let those feelings overwhelm you. When people are constantly telling you that you are lying, that you are not doing what you should be doing for your disability, or questioning if your disability even exists, it’s easy to start taking that to heart and thinking you are not good enough. That you are lying, perhaps, and probably just “lazy.” That you need to try harder and push your limits more.

None of that is true. Not a word of it.

You are not lazy. You are not weak. You are not lying. You do not need to work harder just because people don’t see how much you put into getting out of bed every day. You are not just the two hours that person sees you — you are every day. You exist in the moments when getting out of bed is a Herculean effort and talking on the phone is more than you can handle. Those moments are real. They are honest. They are genuine. We are tired because we fight so hard — we aren’t lazy. There are people in the world who don’t see those moments, but we live them, and we are all together.