March 31, 2020

The chronically ill spend our lives hiding. No wonder you don't see us now.

People with chronic illnesses of all kinds spend so much of our time and energy hiding those illnesses from the world at large. It's effective to varying degrees, with invisible illnesses being of course the "easiest" to hide. Or rather, the easiest for you not to see.

Ambulatory wheelchair users who push themselves to walk into a room and sit on a seat in the corner rather than move around that room in a wheelchair are keeping their illness—their disability—hidden from your sight. People living with lupus or CFS or fibromyalgia who put on their nice clothes and makeup and push themselves to "look normal" while meeting friends for dinner (well, now for Zoom sessions) are keeping their illness out of sight. (Etc., etc.) We hide our medications, our supportive devices (when possible), the circles under our eyes, and anything else we can.

And while we do this for ourselves, to protect ourselves from the truly damaging and scary ways some people respond to signs of disability or illness, mostly we do it for you. To make your life easier, we push our bodies and hide our pain. So that you don't have to do the hard work of engaging with our realities.
    While we hide less from those with whom we are close, especially from those with whom we live, sometimes you're the ones from whom we hide more—because we know our pain will hurt you too. But that's, in this case, not the point.

People living with disability or chronic illness spend so much of our time trying to help the world pretend that our conditions don't exist, to come across as "normal," that is it really any wonder that now, when the world is battling a virus that's far more dangerous for those who are already ill, that same world simply...doesn't care about us?

The blissfully ignorant continue to minimize the importance of tactics like social distancing, the impact of passing this virus through a community, because you simply don't see us.

"Maybe it's better to let the virus kill who it will kill?" people ask in callous thought experiments, unaware that the people they're hypothetically killing off include their barista, their Uber driver, their coworker, their friend. Their family.

"Can't you answer the question abstractly, don't make it so personal?" my uncle who lives on the other side of the globe asked me a few days ago. "I refuse to think of you as that sick!" he then added multiple times.

I wish I could just refuse to be "that sick." But that's not the point either.

I am more than my illness (as are we all), but if you don't see my illness, you don't see me. And because you don't see that part of us, you can abstract the idea of "those with underlying health conditions" from the horrifying question of: "Don't you think this is too hard on us/the economy, so we should just let them die?"

Don't you think we should just let you die?

I am certainly guilty of keeping the reality of my illness (or to be more accurate: illnesses) from the world at large, inasmuch as possible. Though I've started to talk about it all more in recent years as my health has chewed up my life, I still keep most of my reality to myself, and I've spent decades putting the world at ease by hiding my conditions, my pain. Because I was taught, as are most of us, to prioritize putting you at ease. Not to mention the undeniable reality stated so well in Grey's Anatomy ep. 5x17 that "once people see you as sick, they don't see anything else."

And I am more than my illness.

But I am not separate from my illness.

I wish SARS-CoV-2 could sweep the world and take out disability and chronic illness without taking out the disabled and chronically ill.

See what I did there? This is one of those dichotomies that exist in the minds of the healthy, who think about the conditions but not about the people. (Because that's too hard, too depressing, too much of a downer...)

Frankly, even if the total number of those with chronic conditions was a thousand times less than it is, that death toll would be way too high.

But the thing is, we are everywhere. And we've gotten so good at hiding our realities that now to you, the healthy, we've stopped being real. So you grumble about your boredom, you ignore shelter in place orders, you moan about the media overdramatizing, and you curse the falling stock markets as if that's what matters and not our lives.
"Take the disabled if it means I can have dinner with my friends!" 
"Kill the chronically ill so I can see a concert!"
"Who cares about them?" you ask, in your minds or to our faces, forgetting that we're not a them. We're part of your us.

And we can't shelter you from our reality anymore. Now more than ever, we need you to open your eyes and stop denying our existence. We need you to shelter us.

This post first went up on my Patreon. For those who are able during these tumultuous times, I'd appreciate any support you may be able to offer.