This year I hit a milestone: 20 years living with chronic illness. If we’re doing the math—and for the record, we are—that means I've been sick for more than two-thirds of my life. Congratulations, me!
I've spent the last two decades going in and out of several phases when it comes to how I perceive my illness-having, such as:
- not understanding I was sick (because, y'all, I was just a kid)
- not understanding my illness made it more difficult for me to do things than able-bodied people, so I thought I was just lazy or not trying hard enough
- not believing my illness was real at all and I must've been faking (this one's a doozy)
- having no patience for my illness and pushing through a lot of pain and fatigue
- feeling defeated by the symptoms of my illness
- being angry and resentful about my illness
None of this has been linear. And, like the flare-ups of my comorbid conditions—these phases have lasted anywhere between minutes, hours, days, weeks, months, years, and so on.
But here's where I am now: after years of therapy alongside my worsening health, I'm finally beginning to have some acceptance for my situation. With that acceptance (and my lived experiences) has come this fairly hot take:
The pursuit of health is a scam.
If you're able-bodied, I'm not saying you shouldn't eat the things and do the exercise or whatever (honestly, that's your business). What I am saying—as a disabled person with incurable chronic illness—is that chasing this idea of health (aka "the state of being free from illness or injury") is a fruitless thing.
The pursuit of health has personally swindled me out of my time, energy, and money. It has robbed me of joy and deprived my life of meaning for too long.
It was a scam when, as a sick teenager who didn't want to be, I read a magazine article about how a woman "cured her cancer with yoga" and decided I'd do whatever I could to make myself well.
It was a scam when I tried to focus on "eating clean" and exercising through fatigue in order to achieve what I now understand to be white woman wellness.
It was a scam when I lied regularly about how I was feeling, not wanting to inconvenience people (or even myself) with the painful, fatigued truth.
It was a scam when I spent more than a decade visiting various naturopaths, spending thousands of dollars on office visits, treatments, and supplements I didn't always take and often made me feel worse.
I have spent the better part of the last 20 years searching for something that doesn't exist. I’ve wasted so much time denying the facts about my illness and so little time reckoning with the truth: I have a chronic illness and I will be sick for the rest of my life. I will never be healthy. It's just not in the cards for me and I'm beginning to accept that.
And, honestly, it's been really great. Accepting I'm sick and never going to not be has resulted in me using mobility aids, making plans I otherwise would've put off, and unapologetically take the time I need to rest. It has made my life demonstrably better and provided me with the tools I need to take care of myself.
The problem is that so many able-bodied people didn't seem to get the memo? And it seems my radical acceptance of my unwellness looks a lot to them like giving up? I'm guessing because of the ableism?
Perhaps that's unfair (it's not), but I'm not sure how else to explain why able-bodied folks continue to ask me if I've tried that one thing they read about on the first page they landed when they googled one of my diagnoses, make suggestions about my lifestyle without my consent, tell me I should keep searching for a different doctor, specialist, etc., who can treat the untreatable, and then pityingly say, "I'll help" after I tell them I'm not going to.
If I can accept that I'm sick and I'm never getting better, why can't they? And I understand it's more complicated than that, but it's also not. Acceptance is not "giving up." When people can't handle my acceptance, they're not trusting me. They're telling me they see my acceptance as failure.
Which, honestly, also seems like a scam.