There’s an expression I heard (a lot) while I was growing up:
“Name your limitations, and they’re yours.”
Now, this is a keen concept: If you argue for why you can’t do this or that, then you can be pretty sure that you’re constructing a box for yourself. It’s right on par with the Henry Ford quote: “Whether you think you can or you think you can’t, you’re right.”
My mother used to say this frequently, as a means of motivating us kids to be our own cheerleaders to get out of whatever funk we might have fallen into. And it’s great wisdom for that. But it also came into play when I was feeling bad and trying to frame boundaries around what I thought my body was capable of, and unfortunately this idea of self-limitation just reinforced a deeply ingrained and outwardly encouraged self-belief that I’m lazy, uncooperative, and cantankerous—because I was always too cold (or too hot), too tired, too dizzy, too nauseous, too whatever—when the simpler truth was that I was trying to live a normal life inside of a compromised body, but no one knew that I had any kind of a real problem.
I’m talking about having trouble running down the street with the other kids not because I was out of shape but because I’m frequently short of breath. I wouldn’t swim much because the water sapped my body heat, quite quickly leaving me cold and exhausted. Even dancing, which I loved, took a lot out of me when I already had little to spare. So many times when I thought I was just bored, I was actually fatigued instead. I thought it was a moral failing on my part that I wasn’t active and engaged like the other kids. I thought I just had to try harder, so I did, and it was awful. I was (and am) sensitive to sound, intolerant of physical stress and strenuous activity, prone to mind-numbing fatigue, vulnerable to high and low temperatures, and quite a bit more.
I was bookish because it didn’t tax me and I didn’t have much else.
Nobody understood. I didn’t understand it myself, until my late 20s. It would take years of doctor visits before anyone with a medical degree started putting the pieces together. And so I developed a reputation for being a stick in the mud who didn’t want to participate. But I did want to participate. I day-dreamed about diving in. But the harder I pushed myself physically, the worse I felt and the more lazy and useless I assumed myself to be.
I think that’s a big reason that I’m more proactive about being open about my illness now, even though the weighty elements of shame and suspicion continue to burden me. Part of me still feels driven to reassure the people in my life that I am not a hypochondriac, because it’s tough to comprehend the limitations of someone with an invisible illness. I am not in a wheelchair. I am neither blind nor deaf, and all of my limbs and digits are intact. But chronic illness has compromised me just as any recognized disability would have.
If I could somehow un-name these limitations and wish away chronic illness, I would do it in a palpitation—because I get those, too, constantly; it’s uncomfortable. The struggle now is to figure out what I can conceivably do and go after that without pushing too hard and ending up in comparatively bad shape for a stretch of time. I do, however, hold to the wisdom of not naming limitations when I want to keep my spirits from flagging, because I do get to be in charge of my own morale.
If someone you know is living with chronic illness, don’t make assumptions about what s/he can and can’t do. For me at least, that can change sometimes even on a by-minute basis, and it’s incredibly frustrating. I am not looking to be coddled, and I don’t know anyone with chronic illness who does. But do please ask, and try to be accommodating where you can. Just because my body is compromised and more complicated than outward appearances might suggest doesn’t mean that I don’t want to participate.