Essays

Stop Saying “It’s Better Than Being Sick.”

Unless you're chronically ill yourself, you will never truly understand the difficult choices those with life-threatening conditions have to make.

There’s nothing quite as heartbreaking as having to constantly make unpleasant choices for your health, especially when both the pros and cons seem to even out.

That’s doubly true when you’re a young person with your “whole life ahead of you”—an especially insidious turn of phrase when you’re dealing with chronic health issues.

Recently, I was asked a thought-provoking question by a colleague. After a health-related leave of absence, he asked me if I was feeling better. “Yes,” I replied. “But, I’m now struggling with how to afford the medicines I need to stay alive.”

He responded: “Well, it’s better than being sick, right?”

But is it?

No Easy Choices

The choices of the chronically ill are never easy, and they’re certainly not ones that young people with “their whole lives ahead of them” should have to make.

Why do we, as people with chronic health conditions, have to choose between equally terrifying states: letting our medical bills bankrupt us, or risk dying? Is one really better than the other? Is being slowly bled to death financially really such a better choice?

Why do we, as people with chronic health conditions, have to choose between equally terrifying states: letting our meds bankrupt us, or risk dying?

It’s hard to explain to people without chronic conditions exactly how stressful and anxiety-inducing our lives are. They can’t understand what it’s like to get threatening phone calls from insurance companies, once again threatening to deny a life-saving treatment over a bureaucratic technicality. Nor can they understand the panicked frenzy that such calls elicit, as I desperately try to find people who can help me.

This is the reality of having a life-threatening, lifelong condition. People without these issues think illness is a binary state: sick or not sick, treated or untreated. They don’t realize it’s more complicated than that.

Being Chronically Ill Isn’t Binary

For severely immunocompromised people like me, we often face a choice: either take our life-saving meds and deal with long-term (sometimes life-long) side effects, or die.

Ashanthi De Silva

Which is why, in 2015, I cried when my doctor told me I’d have to take steroids or my diagnosis would kill me.

I begrudgingly but religiously took them, and they miraculously allowed me to regain energy, walk my dog, and return to work. But they also weakened my bones to where I now have avascular necrosis in my left hip, in which my bone tissue there is dying. My hair became brittle, and stopped growing. I gained twenty pounds, in places I’d never grown weight before. Sometimes when I look at the before and after photos of starting steroids, my heart sinks, and my mind is in complete disbelief. When people who haven’t seen me in a while see me, it’s like a dagger in my heart when they say: “Oh, I didn’t even recognize you.”

But hey, least it’s better than being sick, right?

Is it?

It might sound selfish to be complaining about side effects when these drugs allowed me to return to a somewhat normal life, but my goodness—what a price to pay to stay alive.

The Prices We Pay

That’s what being chronically ill is: constantly having to pay prices that other people never have to pay, just to stay alive.

That’s what being chronically ill is: constantly having to pay prices that other people never have to pay, just to stay alive.

These are the sorts of decisions that we have to make, choices that don’t feel like choices at all. Which makes me extra grateful for the more mundane choices that other people take for granted: where to go out to eat, or when to go on vacation. It doesn’t take the pain or stress away of having a life-threatening condition, but it does help me be mindful of the moments when I’m not facing disaster. Those are the choices I’m thankful to still have.


Creative Commons photo by Edward Zulawski