The Only Reason I (Temporarily) Stopped Reading Ania Bula’s Young, Sick, and Invisible

In the last days of Boo, I started reading our own Ania Bula’s new book Young, Sick, and Invisible: A Skeptic’s Journey with Chronic Illness. I’d put a fuzzy blanket on the bed and Boo was being super-cuddly. I figured I’d read a few pages of this, move the cat, and get some work done.

Note to readers: do not begin Ania’s book if you do not intend to go on reading it for a while. You get sucked completely in. And you keep promising yourself one more chapter. They’re short, so it’s easy to get away with telling yourself “It’s just one more little chapter. It won’t take very long.” You will continue telling yourself that with every subsequent chapter.

I meant to take a nap that night, because I was dying of exhaustion. Just one more short chapter, I promised myself until dawn.

People: I haven’t been able to concentrate long enough to actually read a book since the new year. And yet, here I am, virtually unable to put this one down. It’s that compelling.

I eventually was able to pause in my reading by falling unconscious. Then N had to move out, C moved in, the house was in chaos, I bawled my eyes out over losing Boo, and all of that uproar allowed me to finally, firmly, set Ania’s book aside long enough to do the damned Supernatural summary I’d promised Zeroth days before. And I had to research wendigos for our analysis, which is another book that managed to hook me at the beginning and hold me captive, so we’ll discuss that shortly. I just had to pause in reading that to tell you that you really must read Ania’s book.

I’m just over halfway through it, and it’s already been invaluable. I mean, I have a chronic, invisible illness, so you’d think I could grok this shit, but Ania’s alerting me to things I didn’t even think of. She and I both developed arthritis at a young age, but while mine has been happy to linger in my lower back and not give me too much shit as long as I don’t stand eight hours a day, hers decided to about ruin her life. And she shows how doctors react to a person that young having joint-destroying arthritis: too many of them pretend it can’t possibly be that bad, because young people don’t get terrible arthritis. I was almost literally gnashing my teeth out of my jaws, my fingers twitching to smack a doc, as they either denied there was a problem or denied her the medicine that would treat it, due to her youth.

By the way, fellow Americans, don’t get all smug and pretend it’s because of Canada’s socialized medicine. I’ve seen the stories. I know many of our doctors are as bad or worse, but in our case, we have to fucking pay out of pocket for them to condescend to us.

I’ve never dealt with Crohn’s disease, but I have a cousin who has. So reading her unvarnished depictions of what it’s like to live with it has me feeling 1000x more empathy for him. Also, I am ready to crusade for abundant accessible bathrooms and special laws to either protect workers with such diseases, or make it mandatory that the state gives disability to support people who can’t hold down a job because employers are absolutely awful about letting you take care of your business. Nobody should have to live in poverty because of an autoimmune disorder, but guess what happens in our vaunted industrialized countries? Yep.

(On a side note: employers need to get a lot less terrible about bathroom breaks. The call center I worked at had a huge number of people with kidney stones and other problems because they weren’t allowed to go to the bathroom often enough, so they’d end up not drinking enough water. This bullshit needs to stop.)

Ania is so good at describing exactly what it’s like to have these diseases and be treated as disposable by society because of them that it’s painful. Also, all the content notes for medical abuse, controlling parents, gaslighting, and related fuckery. Also, this is a good book to skim if you can’t stand graphic descriptions of what Crohn’s does to your digestive tract, and the resultant bathroom adventures. But you should still read it, even if you have to skip bits.

I’ve only just now gotten to the portion where Ania gives excellent, hard-won advice to people with disabilities. I’ll do a second review for that half of the book. I just wanted to stop right here to tell you that you should be reading this, and also forcing copies of it on everyone you can think of who might influence disability policy, whether they’re business owners, managers, politicians, or various other officials. Give a copy to that jackass who scoffs at people whose disabilities don’t follow the accepted format of complete blindness, deafness, or paralysis. Give a copy to that asshole who thinks people whose disabilities aren’t readily visible are faking it. If they won’t take a copy, ambush them and read bits out loud on occasion.

We need to change the way we treat people with disabilities. We need to learn how to make the world work better for folks who don’t have perfectly functioning bodies and brains. And hearing directly from an eloquent person living with various chronic conditions, someone who sees clearly how we can fix things to accommodate various disabilities, may be the best way for us to stop fucking around and make the necessary changes.

Image shows the cover of Young, Sick, and Invisible, which is a close crop of an unclothed person folded in a fetal position.
Seriously, though, buy this book.
The Only Reason I (Temporarily) Stopped Reading Ania Bula’s Young, Sick, and Invisible