Several women published books about women and healthcare this year, and I eagerly read “Doing Harm” by Maya Dusenbery when it came out this spring. I had almost forgotten about “Sick” by Porochista Khakpour until a friend posted a year-end list of books of note, and it was on there under memoirs by women. The eBook happened to be available for download from the NYPL, so I took it out last weekend and gave it a read.

Porochista’s story of her life as an unwell immigrant woman of color is a compelling one. It is full of horror and suffering. And I wish I had been shocked by it.

Instead, I noticed which parts of her story I could relate to. I noticed which pieces sounded like stories I hear in Facebook support groups every day. I noticed which pieces of her story are ensnarled in racism and the lack of financial accessibility to the US health care system. And it just reinforced everything I already know, and everything that Maya Dusenbery pointed out: women, especially poor women and women of color, are screwed.

Relatively early in the book Porochista writes about the unfortunate scenario of being in a hospital:

I’d tried to avoid this hostile world of hospital rooms and doctors’ offices for years, but it haunted me. Here I was again, with something unrelated to Lyme and only two choices—to come clean or to hide, but I knew every decision would have something to do with my diagnosis. It amazed me that even after all these years, with all the time that had passed, as I managed to stay out of the medical system for the most part, and my fluency in their language still being proficient, that I could still be in this position—helpless, crazy-seeming, confusing, inconvenient, out of their norm, a problem. And not one worth the time to be solved.

And I thought, that sounds about right. I avoid the hospital at all costs. I carry a wallet card that explains my health conditions in hopes of preventing someone from calling an ambulance if I pass out in public. If I travel by myself, I wear a medical alert bracelet for the same reason. I’ve heard stories of folks who are treated so badly by their local hospitals when they need emergency access to fluids (not unusual for folks with Postural Orthostatic Tachycardia Syndrome) that they have letters on file by their doctors and carry a copy with them and still have no guarantee of getting care when they need it. I regularly see folks on line asking for advice about whether to go to the hospital as they end up losing functions, finding themselves in excruciating pain, and other women counseling them not to go. Weighing the question of the small possibility of relief versus the possibility of being sent home with no care, being accused of “drug seeking,” being abandoned to the waiting room for hours with no one to watch their kids.

This stuff happens every day, folks. Maybe to you or someone you love.

I was also struck by Porochista’s bargaining and negotiations with herself. The years in which she thought it might be easier to “just” chalk up her ill health to addiction instead of admitting she might have Lyme. The ways we can easily deny our realities because they are too inconceivable. Because almost anything might be better that a resignation to a body that you (and your doctors and gurus) cannot heal, and a life you can no longer live. Even after knowing, the adjustment is hard:

It would take a second to remember myself, what I’d become. My full-time job became my health, which was now a mystery illness that was hopelessly complicated by and tangled with addiction to psychiatric medications. I couldn’t believe I was there again, after all the bad experiences I had had. Back to a life of pill bottles and pill cutters and days measured in dosages.

It is a gracious gift, women life Porochista who are allowing us to be voyeurs to her life, because there are thousands, probably millions, of stories that share something of hers. And they need to see the light of day.

Reading List: Sick by Porochista Khakpour
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