Next time you’re in a crowd, look around. Odds are that every second person you see has a chronic diagnosis. And most of us will look like everyone else. You’d never peg us as “sick.” You’d think we were “normal” — and, in fact, we are, in two important ways: First, there are now as many people with a chronic health challenge as are not; so statistically, there are enough of us to be considered “normal.” Second, in every meaningful way, we’re no different from the “wells:” we share the same hopes, fears, dreams, and needs. Getting “sick” didn’t make us any less human. It didn’t change our goals, but it may have affected how we can attain them.
So why is our idea of what it means to be “sick” so different from the reality millions of us live? Because we’re generalizing from the wrong experience.
Most of us are born reasonably “well.” Our health was something we took for granted. It faded into the backgrounds of our lives and we didn’t notice it…until it wasn’t there.
We’ve all learned how to be “sick.” No one sat us down to teach us, but we’ve learned from experience. When we’re sick, we feel bad, laze around and complain, take our meds, and everyone lets us “hit pause” on our lives. We get a “time out” to get back to normal. We’re “excused” from work, school, and life.
Society gives us a break because it’s not our fault. Even though we’re not currently “pulling our weight,” others accept it’s out of our control. We’re not lazy, shifty, selfish, cursed, or sinful. We’re just “sick.” Everyone understands we’ll get better, make it up on the other side, and give others a pass when they need it.
But to earn that pass for being sick, we agree to do everything we can to get well again. We’re seeking the best medical help, following their advice, taking our meds, having procedures, attending therapies, and visibly cooperating with caregivers.
There’s one big catch: everything we learn about how to be “sick” presumes an acute medical condition: something short-term that we’ll be over soon. And that’s where it breaks down for chronic illness: there is no “other side.” Or, if there’s a chance of an other side, it’s not at all certain. Or, if we do return to something close to well, we live with the possibility of relapse.
Society only gives us two options: we’re “sick” or “well.” We’re definitely not well, but we’re also not sick in the ways people expect. That leaves everyone in an uncomfortable place where the rules we think we know don’t work. It’s frustrating. How do we react to the knowledge that someone’s “sick” when they won’t get “well?”
But we can’t live forever as “sick.” That’s discouraging and frustrating. We try to live as “normally” as we can, when we can, but that sends confusing signals to everyone. The “sick” role is one we all know. We also know it doesn’t “fit” our chronic cases. In reality, there’s a lot of space between the comfortably clean stereotypes of “well” and “sick.” There has to be a better way, but the socially approved “sick role” is just wrong. And worse, harmful.
We need another cultural category for “chronically ill,” one we can fill with a different set of expectations. The first step is that more of us tell our stories. The more people we all see just living our lives with a chronic condition, the more our misunderstandings of chronic illness get reformed.
Life doesn’t end with a chronic diagnosis. It may be that some aspects of our former lives must change, but it doesn’t change who we are or our humanity.
We may have to act in different ways to accommodate the demands of our health, but we don’t want to become “that sick person.” It needs to be acknowledged, but it can’t become our identity. A little bit of grace and conversation helps everyone get comfortable with the idea. The more we share our experiences (sick, well, and caregiver), the less we have to rely on filling in the banks with the things we’ve learned from acute illness that just don’t apply.