Sickness narratives do not always start with symptoms and end in recovery. Treatment does not always follow test. A new diagnosis might arrive at any time, or never. Sick time is not linear time. It is circular. It lapses and relapses, it drags, loops and buffers.
I desired a singular narrative but the form, with its need to end in a place it did not begin, refused to accept my version of events. I originally proposed an order that followed the medical narrative that started with “Symptoms” and ended in “Recovery,” hoping to “recover” illness from “Cure.” My version resisted order, or could be ordered in any number of ways. There was my own story of illness, which started in childhood, seemed to stop and start throughout my young adulthood, and was also unfolding in the present, and there was my mother’s story, which was inextricably entwined with mine. My diagnoses had their own timelines, their own futures and histories, which allied us with previous centuries of nervous illness, but also belonged to the present, all the new theories tested by research studies and treatment trials, all the contested evidence of controversial treatments and greatly anticipated treatment guidelines.
Chronic illnesses are bound to time; the time of being sick, most probably without end. You might not feel acutely ill every day. You might feel well-enough for a few months or years, and later relapse back into being severely unwell—as if you had never got any better. It will make you think that sometimes you have never been well, even if, at times, you believed you were well-enough. Sometimes it will make you think you are too well to be sick, and too sick to be well.
I live in sick time, inside my loop of pain. And in that time, I gather.
Science fiction writer Ursula Le Guin thought of books as carrier bags or containers; humanity’s first tools being the bag, the sack, the net, something to hold it all together, rather than weapons of domination with spear-like narratives. Carrier-bag books are “full of beginnings without ends,” holding initiations and losses, transformations and translations, containing “far more tricks than conflicts, far fewer triumphs than snares and delusions.” If we are to recover illness from capital and from patriarchy, perhaps we need more books-as-containers, books as medicine bags, biobanks, and sick rooms.
The more you uncover, the more you realize you don’t know. Uncovering is tiring—the sensation that the amount you do know and don’t know are increasing at the same rate.
What I know is: you will be told at some point in your life—if you haven’t already, which is likely, especially if you present as female—that the ill feelings in your body cannot be entirely explained. They will look for all the things they know the shape of and find nothing. You might be told: you are stressed, or you are anxious, or you need to go to a support group even though they know there aren’t any, or aqua aerobics on Wednesdays. You might have different questions to me, or my mother, or the other women in this book. You might come across scraps of fiction that present themselves as fact, and new research and studies that sound made up, because they might in fact be bended truths. Following advice—the small changes and life overhauls—will probably not make you “well,” but it won’t mean people will stop giving it to you.
A sickness narrative is a useful structure, but one that could be undermined at any stage. One that insists: you can recover from this. For many of us, there will in all likelihood be no recovery. Some of us still do not know what we need to recover from.
As Alice James knew: “And then these doctors tell you that you will die, or recover! But you don’t recover. I have been at these alterations since I was nineteen, and I am neither dead nor recovered—as I am now forty-two there has surely been time for either process.”
But there is an ending, and that is: accepting that there might be no end to illness, that your life still has meaning, that you are worthy of care, and that you still have an ability to make something, just because it takes you two or four or ten times longer than “everyone else.”
This is not a desirable ending—acceptance is not dominant enough. It is not acceptable to accept suffering. Accepting sounds like indulging, like refusing to get better, like a resignation, or a sickness in itself. Except it is not.
Accepting chronic illness is not the same as accepting bad care or bad science or bad politics.
The narrative of recovery—from symptom language to test to diagnosis to treatment and cure, has been co-opted, turning work into a health outcome and incapacitated persons into a scourge, not worthy of equal care. The narrative of cure and recovery is not ours to take back.
I return, relapse and repeat myself. I fall from grace.
I find un-recovery more useful, because it holds the potential for crip pain and crip joy.
This un-recovery is each our own. Maybe it looks like rest without the meat, water, and milk, or like knowing that you did not choose to be ill, and that it is your socioeconomic circumstances that have been chosen for you and naturalized by metaphorical language. Maybe it looks like trying to remember what you knew about the natural world that has been destroyed and colonized by my white ancestors, like wild lettuce for pain relief and yarrow for healing wounds. Maybe your un-recovery is based in feelings not facts; theories like: there are not different systems in the body, or: flying and fighting are not the only instincts, and: some people need opiates to survive their pain, and some doctors are criminals, and some people think they are just doing the right thing—and in none of these circumstances should the patient be shamed. Maybe it looks like scanning your body as an act of reclamation. Saying No but keep asking me in case I say Yes, even if I never say Yes. Maybe it is addressing the root cause, the reasons for your body’s failures, which are probably not ‘just anxiety’, and maybe it is just not listening to an unsolicited suggestion that starts with Have you tried . . .
Excerpted from Ill Feelings by Alice Hattrick. Used with the permission of the Feminist Press. Copyright © 2022 by the author.
