Imagine What It's Like to Live My Life as a Chronically Ill Person

“Well, hey, at least you get to just lay around and do nothing all day.”

I’m sure many of us who are chronically ill have heard countless varieties of this phrase ad nauseam. The first time someone said this to me, I smiled and chuckled a bit, thinking they were just joking and trying to comfort me in some well-intentioned yet misguided way. But when they didn’t smile back and instead responded with nothing but a cold stare, I froze as the realization dawned on me. They were being 100 percent serious.

“Yeah, something like that, I guess.” I replied, quite frankly stunned and unable to come up with anything else.

Their comment ran circles in my brain for a while after. I just couldn’t understand why someone would say that to me. Then, it finally clicked — they equate chronic illness with those times when your parents let you stay home sick from school because you had the sniffles, so you had fun playing video games.

A lot of people actually think that’s all being chronically ill is. While my fellow “chronics” and I know this couldn’t be further from the truth, this just really isn’t something most healthy people seem to know or understand.

So for those people who really don’t “get it” but would like to try to understand our lives better, I’d like you to imagine something. I want you to think of yourself as the most physically unwell you’ve ever been in your life. Think of the most pain you’ve ever experienced, the worst sickness you’ve ever had, or the absolute most your body has ever been through. Think of how you felt and how hard that may have been to go through. Then remember when your symptoms got better or when that pain subsided. Now imagine it never did.

You wait days, weeks, months and that illness or pain still remains. You keep waiting to get better, to get back to your “old self” — but you never do. Sure, some days may be better than others. Maybe today you’re at 40 percent when yesterday you were at 20 percent. Or today you’re at a seven out of 10 on the pain scale when yesterday you were at a nine. But you’ve been running on fumes for far too long, and you are not OK.

Imagine that you’re battling your own body endlessly. You’re constantly taking hits with no way to defend yourself and no time to recover, and you’re exhausted beyond words. It feels like your body is just dragging along with you wherever you go. You try your best to do what you can, but it’s clear you’re just not capable of what you used to be able to do. You don’t feel like yourself anymore. You’re unsure how to navigate life and its responsibilities now in an unpredictable body that‘s always sick and hurting.

As you’re trying your best to relearn how your own body functions and figure out how to cope with your newfound symptoms, the world keeps on turning. As you keep trying and trying and pushing and pushing, the world starts to leave you behind. You still look perfectly healthy on the outside, and handling your daily responsibilities has always been something you’ve done with ease. So why would anyone expect anything different now?

Everyone gets sick sometimes, and the majority of people recover with no problems. So when it’s been months now, and you’re still ill, people may start to doubt you. They may doubt whether you’re actually sick or if you’re just “faking it” for attention. They may doubt that it’s actually “that bad” or assume you’re not trying hard enough to get better. They might doubt your body’s newfound limits and think you’re just choosing to be lazy instead. You try your hardest to convince them what you’re feeling is real, but most people either won’t take the time to listen or simply refuse to believe you. It truly is a special kind of pain being told that your entire existence is a lie and that your pain is actually your own fault, especially if it’s someone close to you talking. But you continue to push on as always — working your hardest to function every day because that’s really the only option you have left.

The fact of the matter is that chronic illness may change the entire framework of your life. It can follow you everywhere, kind of like your own body does. It may be difficult, frustrating, isolating, and miserable a lot of the time. It’s not just getting to just chill in bed every day because you have a bit of the sniffles. It’s often a constant, grueling cycle of fighting against your own body, trying your best to function, getting knocked down, and picking yourself back up again.

Many of us chronically ill people have buckets of patience, resilience, and straight-up willpower; because we often have to in order to survive. We are not “faking.” We are not “lazy.” And I can assure you that we are trying our absolute best. Just because our best may not look like what you’d expect doesn’t mean we’re not telling the truth.

Follow this journey on the author’s Instagram, @chronicaseyblog.