Sick Woman Theory
January 21, 2016 8:27 AM   Subscribe

Sick Woman Theory: Johanna Hedva on chronic pain, endometriosis, mental illness, and caring for yourself and others as an anti-capitalist act.
posted by You Can't Tip a Buick (31 comments total) 39 users marked this as a favorite
Oh I was going to post this (like had the new post page open) and I'm so glad someone did! I don't know how I feel about it yet, but the fact that I'm still digesting after reading it yesterday is a sign.
posted by immlass at 8:37 AM on January 21, 2016 [2 favorites]

Hey now....not only was I just talking about Mask with some friends, but I actually know people who write for it and one person who publishes it. Huh.
posted by Frowner at 9:14 AM on January 21, 2016 [2 favorites]

Thanks for this. It kinda bounces around a bit, but it hits on the nose a bit, too.
posted by eclectist at 9:17 AM on January 21, 2016 [1 favorite]

I didn't know about Mask until Sick Woman Theory came across my fb feed late last night and now I'm having the hardest time working instead of spending all day reading every article.
posted by You Can't Tip a Buick at 9:18 AM on January 21, 2016 [1 favorite]

See now, it's so odd to see my people represented here - this powerful feeling of recognition. This could almost be the story of one of my best friends - the set of concerns and politics and aesthetics and experiences here are so similar to hers.

It's really trippy - I'm used to my people, who are the queer weirdo anarchist academics outside the academy with things wrong with them being sort of the dark side of the moon of my life - something I know is there, something that's half the world, but that's invisible in the work/computer/chores/groceries "normal" part of my life.

Perhaps it can all be explained by the fact that my Moon’s in Cancer in the 8th House, the House of Death, or that my Mars is in the 12th House, the House of Illness, Secrets, Sorrow, and Self-Undoing. Or, that my father’s mother escaped from North Korea in her childhood and hid this fact from the family until a few years ago, when she accidentally let it slip out, and then swiftly, revealingly, denied it. Or, that my mother suffers from undiagnosed mental illness that was actively denied by her family, and was then exasperated by a 40-year-long drug addiction, sexual trauma, and hepatitis from a dirty needle, and to this day remains untreated, as she makes her way in and out of jails, squats, and homelessness. Or, that I was physically and emotionally abused as a child, raised in an environment of poverty, addiction, and violence, and have been estranged from my parents for 13 years. Perhaps it’s because I’m poor – according to the IRS, in 2014, my adjusted gross income was $5,730 (a result of not being well enough to work full-time) – which means that my health insurance is provided by the state of California (Medi-Cal), that my “primary care doctor” is a group of physician’s assistants and nurses in a clinic on the second floor of a strip mall, and that I rely on food stamps to eat. Perhaps it can be encapsulated in the word “trauma.” Perhaps I’ve just got thin skin, and have had some bad luck.

I know that at least three of my friends would not be seriously sick if we didn't live in such a shitty society - things that happened to them or that continue to happen to them either cause or exacerbate their illnesses, and their illnesses would be manageable if they had a safety net.

I have a friend who is a trans woman from a working class background and whose employment prospects are thus a bit limited. She has some chronic health stuff. She has a job which makes her health worse, materially worse - I've seen her get sicker. It would be great if she could either have some other job that didn't make her sick, or could get on disability, but she's just sort of sick on several vectors, not very sick on one, and technically she can just work herself sicker and sicker and keep a roof over her head, sort of.

I feel like there's the daylight world that we're all either part of or supposed to pretend to be part of, where you have a "normal" family structure and "normal" sexual practices and "normal" health and a "normal" house and a "normal" job, and where you're supposed to conceal how you really live (and while "normal" is expanding to admit some queer people, for instance, it's still modeled on heterosexuality) and then there's this, which is the real of my friends.

I have a foot in both worlds because I have a secretarial job and no serious illness, and every day I feel so disoriented because I have to go from one set of experiences, beliefs and affects into the daylight world.
posted by Frowner at 9:32 AM on January 21, 2016 [45 favorites]

This is good stuff right here:

“Sickness” as we speak of it today is a capitalist construct, as is its perceived binary opposite, “wellness.” The “well” person is the person well enough to go to work. The “sick” person is the one who can’t. What is so destructive about conceiving of wellness as the default, as the standard mode of existence, is that it invents illness as temporary. When being sick is an abhorrence to the norm, it allows us to conceive of care and support in the same way.

Care, in this configuration, is only required sometimes. When sickness is temporary, care is not normal.

Here’s an exercise: go to the mirror, look yourself in the face, and say out loud: “To take care of you is not normal. I can only do it temporarily.”

Saying this to yourself will merely be an echo of what the world repeats all the time.

posted by emjaybee at 9:38 AM on January 21, 2016 [21 favorites]

You don’t need to be fixed, my queens – it’s the world that needs the fixing.

Been saying this for two decades.
posted by yesster at 9:50 AM on January 21, 2016 [11 favorites]

The Sick Woman is an identity and body that can belong to anyone denied the privileged existence – or the cruelly optimistic promise of such an existence – of the white, straight, healthy, neurotypical, upper and middle-class, cis- and able-bodied man who makes his home in a wealthy country, has never not had health insurance, and whose importance to society is everywhere recognized and made explicit by that society; whose importance and care dominates that society, at the expense of everyone else.

I am putting this quote in the easy access memory bank for discussions with the many thrivers who have no empathy for the survivors of no or poor insurance.
posted by narancia at 10:01 AM on January 21, 2016 [12 favorites]

"I feel like there's the daylight world that we're all either part of or supposed to pretend to be part of, where you have a "normal" family structure and "normal" sexual practices and "normal" health and a "normal" house and a "normal" job, and where you're supposed to conceal how you really live (and while "normal" is expanding to admit some queer people, for instance, it's still modeled on heterosexuality) and then there's this, which is the real of my friends."

QFT CANT QFT ENOUGH, even with more $$$, QFT, can't QFT enough
posted by beefetish at 10:55 AM on January 21, 2016 [4 favorites]

I am a (queer, white, professional) woman with chronic illness and I work with people who have disabilities that keep them out of the workforce and/or dominate their lives, and this

What is so destructive about conceiving of wellness as the default, as the standard mode of existence, is that it invents illness as temporary. When being sick is an abhorrence to the norm, it allows us to conceive of care and support in the same way.

becomes this

Because to stay alive, capitalism cannot be responsible for our care – its logic of exploitation requires that some of us die.

all too easily.

The whole piece is so descriptive and dead on. I can't tell you how often people say to me things like "I thought you had that under control" or "I thought you had the medication sorted out" when in fact all relief is temporary, all control is temporary, illness is a constant ghost haunting my days and nights and reminding me how temporary my abilities to work and function are.
posted by bile and syntax at 10:59 AM on January 21, 2016 [16 favorites]

This is wonderful, thank you so much for sharing.
posted by xarnop at 11:05 AM on January 21, 2016

I don't know; I've been sitting here refreshing the comments hoping someone would come along and express how I felt while reading the article so I could favorite it and move on and be represented more articulately than I can do for myself.

I suffer from a chronic illness; I have been disabled both practically and legally. I am a woman. I am also a medical student. My whole life is about providing care. A large part of my personal ethos is about surrendering to the vulnerability of the person to the human body. I do not for a minute question that social and political factors exacerbate illness, but I can't accept an assertion that illness is a social construct when so much of what can befall a person is an aberrant cellular process. In this essay I see the same post rationalization and fear that makes most people, even doctors, say "Was he a smoker?" whenever we hear about a lung cancer diagnosis.

To me this essay is about creating an escape from the human experience of physical decline and death through the rejection of society as it operates today. If I suffered as the author does I would probably want to, too. But to me it doesn't reflect reality.
posted by telegraph at 11:10 AM on January 21, 2016 [7 favorites]

Somewhat unrelated to the original piece, I'm trying to find more on Hedva, her books and stuff, and it's hard as hell to find her output. Does anybody who has more experience chasing down small press academic weirdo output have advice?
posted by beefetish at 11:20 AM on January 21, 2016

telegraph- when we discuss plant disease we often first look at the soil, at the water, at the light conditions. We innately know to fix the environment as an innate part of plant health. The fact that we forget this critical component of health- and the social needs of humans that can manifest physical health problems, means w define as "diseases" things that are merely symptoms of needs that do not need to be defined as diseases if we would at least first try connecting the person with the ingredients of health they may be missing.

I am a poor person, and I know hypothetically people tell me there are great doctors who do this, but I can assure you on Medicaid they only want to know if you want pain pills, because they don't give pain pills. I don't want pain pills, I want to know what's wrong. "We don't do that kind of test". Well that's when I had Medicaid for a few months. I guess I shouldn't be too sad to have lost it since it didn't do anything for me anyway.

I agree there is a component of medicine that is "these cells are unhealthy, how do we help these cells" but in reality nurturing, social support, social status, all these things impact immunity and cellular health too--we are taking a being that is part of a system out of the system and pretending we can solve problems that are not being formed at the individual level. Is there toxic exposure in the home, in the air nearby? The more we learn about disease, the more it appears to be more often a process of exposures over many generations of environmental and social factors and less "random biological misfirings" which was the model used when we simply haven't done the research to know more. The ideology and labelling and definitions about symptoms in the body are very often social constructs- and they can limit us a great deal when we are unwilling to examine an unpack a lot of loaded baggage that is utterly false about the entire premise we put behind a lot of conditions and their subsequent treatment.
posted by xarnop at 11:35 AM on January 21, 2016 [10 favorites]

xarnop, I do not question the importance of environmental factors in illness. However, I reject dogma that suggests that environmental factors are the source of all illness, or that addressing environment would save us entirely from the scourge of illness. To say so is to deny the lived experience of millions of people and the science that tells us otherwise. I believe that essays like this one arise from a suffering and frustration that could be eased through social and political change but not necessarily resolved.

Maybe the exaggeration is part of the protest and I shouldn't begrudge the author that right because the social and political problems are so huge. As I mentioned already, I think a lot of people take great comfort in this belief which is at the center of the essay -- I'm not a smoker, the ravages of lung cancer won't happen to me; if not for the social problems which we CAN change I would not suffer as I do -- but ultimately I think the myth that illness can never be essentially its own thing that happens for reasons beyond our reach is damaging, too.
posted by telegraph at 11:43 AM on January 21, 2016 [5 favorites]

, but I can't accept an assertion that illness is a social construct when so much of what can befall a person is an aberrant cellular process.

So "social construct" doesn't mean "made up" — "constructed" in this context doesn't mean "faked," it means "built," like a building is constructed, or a piece of software is constructed. I think a lot of people who were first exposed to the idea of "social construction" through the science wars of the 1990s misinterpret the term in this way.

We are presented with a world with a bunch of things in it, we put those things together in certain ways, and some ways hold together better than others. Think of it like lab practice — you have to put together a lot of objects in a very, very special configuration to extract scientific facts from inert matter — to build or construct endometriosis out of a set of symptoms and a set of cell samples, for example. Our need to construct knowledge of endometriosis doesn't mean endometriosis is fake, or that it's a "mere social construct" that we can change or fix at any time, any more than the knowledge that buildings are constructed by humans allows us to construct buildings that literally defy gravity or are bigger on the inside than the outside or whatever.

For me the crux of the article isn't that disease is socially constructed or whatever. The crux of the article is that constraints imposed by the market valuation of human work and human time keep us from caring for people who need care — including ourselves — and that we must somehow learn how to care for both ourselves and for others against the demand that we use most of our time satisfying the market instead. Especially because most of the market's demands are in a broader sense a total waste of time and life and effort compared to the acts associated with caring.

Essentially, we find ourselves obligated to spend our time supporting the social construct of the market (another thing that, like endometriosis, we can't just wish away) rather than supporting each other. Occasionally the market allows us to express care in limited ways, but more often it precludes the giving of care, especially care for people who are outcast/outcaste.

Moreover, armed with the knowledge that we just can't wish away pain or the market, we can then take the revolutionary step of choosing, insofar as we can, to see the market — the thing that's preventing us from caring for each other and for ourselves — as broken, as a social construct that misrepresents reality, rather than seeing ourselves as broken, or our neighbors and friends as broken. The problem with Procrustes's bed was with Procrustes, not with his guests.

Or something like that. Hedva puts it better than I ever could.
posted by You Can't Tip a Buick at 11:54 AM on January 21, 2016 [24 favorites]

Beefetish, have you looked at her CV? It's got a some really useful links in it. Her CV also makes it pretty clear that most if not all of her books are artist's books, with editions as small as ten copies, sometimes handwritten on nonstandard materials such as used pain patches, etc.-- And as nifty as that sounds, it also means that for most of us, actually getting to read them verges on impossible. Alas.
posted by palmcorder_yajna at 12:07 PM on January 21, 2016

Sickness” as we speak of it today is a capitalist construct, as is its perceived binary opposite, “wellness.” The “well” person is the person well enough to go to work.

I assure you that the idea of being sick vs. being well existed before capitalism and that those are not arbitrary constructs.
posted by deanc at 12:22 PM on January 21, 2016 [3 favorites]

palmcorder_yajna, after reading her CV that was my concern. it's such a bummer, her work operates at the intersection of a bunch of stuff i'm interested in and i wanna know more!
posted by beefetish at 12:33 PM on January 21, 2016

Why not write to her? She might have a few copies of her work kicking around, or be willing to share a PDF or something. It's not that writers are universally required to be responsive to enthusiastic inquiries, but I don't think there's anything actually wrong about writing to someone to enthuse and ask about access to their work.
posted by Frowner at 12:47 PM on January 21, 2016 [4 favorites]

I think one of the things that stands out to me as a chronically ill person is that the world is full of folks like me: sick, old, limited ability to get around, tired, etc. But the system we're part of assumes we're the ones who are unusual and abnormal, and the folks who are temporarily at the top of their game (because we're all gonna get old even if we don't get sick, unless we die first) are the normal ones. The truth is that it's the other way around. "Dis"ability is what most people have, with some periods of ability in the middle for some folks.

The tie-in to capitalism here is that we all strive to look "normal", or most of us do anyway because the world makes so little effort to accommodate us. And normal functioning in a capitalist society is ability to work. What would a world where our ability to work, our conformity to the one-spouse one-house 2.5-kids-plus-dog etc. lifestyle, wasn't the arbiter of what was normal look like?
posted by immlass at 1:01 PM on January 21, 2016 [13 favorites]

"Dis"ability is what most people have, with some periods of ability in the middle for some folks.

At its essence, Christianity concerns itself with the reality of suffering and how to grapple with it. The idea was that suffering in the world exists and you will always be subject to it. That problem was more ever present when many sicknesses could not be effectively cured and when famine was just around the corner.

At the same time, there is the idea, predating capitalism and Christianity, that there is an ideal form of humanity that we strive for or at least compare ourselves to. And that's why the concept of sickness is not merely a modern social construct of a capitalist society.

I am even tempted to argue that medicine has been in a pre-modern state until quite recently with the advent of evidence based medicine and rigorous testing of efficacy.
posted by deanc at 1:15 PM on January 21, 2016

immlass, absolutely. the idea of being temporarily able-bodied. And realizing the sheer amount of effort that put into being "normal" "functional" by capitalist standards and watching people get just ground up by that effort. And beginning to wonder, why is this system which requires people to be ground up - as Frowner points out upthread - people who are trying to make a go of it, participating in the system, and still getting ground up. Why. Why not something else.

frowner Ha yeah! She just followed me back on Tumblr and I am frankly terrified of interacting with "legit" art people after having bad experiences interacting with comics people. But I will give it a shot, I am so completely interested in her Euripides cycle. all of it rly.
posted by beefetish at 1:39 PM on January 21, 2016 [5 favorites]

Sickness” as we speak of it today is a capitalist construct, as is its perceived binary opposite, “wellness.” The “well” person is the person well enough to go to work.

I assure you that the idea of being sick vs. being well existed before capitalism and that those are not arbitrary constructs.

The line between sick and well is quite thin and wiggly. For social security disability purposes, the line also relies on a list of jobs and job descriptions that have often not been updated since the 90s, and more often not since the 70s - jobs that don't exist or have been outsourced or have been changed so much as to have totally different requirements.

What it is to be well is often to have an employer who makes allowances, who accommodates, who excuses absences, who is, in a word, kind. What it is to be sick is often to not have these allowances made, to have an employer who is focused on the money, or to be absent once too often, to have a few too many bad days, to not have the support network at home that can provide the care needed to stay in the workforce.
posted by bile and syntax at 2:56 PM on January 21, 2016 [5 favorites]

I am very sympathetic to telegraph's points about remembering that illness is a biological reality, not a metaphor, and sometimes I wish the author were more careful in her language. But then I also appreciate that she's writing a sweeping, expansive manifesto here and that her writing is meant to disturb and provoke more than to achieve technical accuracy. You're supposed to read this and feel "me too."

And this did resonate with me. I was at the doctor last week going through my medical history, embarrassed. "I know I sound like a malingerer," I said. "It's just a bunch of minor things, all vague immune stuff, GI stuff." "No, actually," the doctor said, "have you heard of something called ACES, the Adverse Childhood Experiences Study? This is why we get your whole history." And she explained how stressors and trauma can affect your health for the rest of your life. It's funny, that conversation was more validating than any other I've ever had with a doctor. I know that some of my complaints are somatic but to be told they're still real... it just felt like she was saying I mattered, you know? Like I was someone worth being taken care of. It's a little thing, but it's more than I'd gotten before. And that's the feeling I had reading this.
posted by thetortoise at 3:30 PM on January 21, 2016 [13 favorites]

Yes, excellent point thetortoise, I was going to come in to say the same thing. I spent a few weeks going through everything related to profound acute and chronic endometriosis pain at the Mayo Clinic (yeah, I get it, I'm lucky, even luckier to go there when I live in Australia and was in the sky for over a day to get there). This is one of the most authoritative medical centres in the world and that is where I learned all about this ACES test, where I was extensively questioned and counselled about my formative experiences, and how indelibly Mayo says they impact health, especially in the surge of chronic illnesses of people in their thirties.

It was so extremely validating to have a range of medical staff across every faculty - pain, kidney, heart, pelvis, psych etc - draw links to the ACES test and what that means for a person's body systems maturing in a physically challenging environment of constant fear, vigilance and flighty adrenaline. I often thought to myself that my chronic illness and acute pain was my body's way of saying I just work in this world the way you want me to. I can't keep up the mask of okayness.

You know, it's not just money being stripped from my/our lives via a lack of employment agency. It's the feeling that my/our cultural identity is so deeply constructed via our work in the paid world. 'What do you do?' icebreakers are not asking about how often you sing to your dogs but how to define who you are.

There is a super Australian working dog called a Kelpie - I had them all my life growing up on a farm. They are amazing animals but they go morose, aggressive, mopey and waste away when they don't have a job to do. When I see people with kelpies in the city I am saddened at all that dog is suffering from not working, and desperately hope that their owners work with them everyday. I feel like a kelpie - intrinsically I have the innate desire to be something, work hard for something/someone, to be doing a good job. Not working, not building something is making me mentally and emotionally waste away.
posted by honey-barbara at 6:32 PM on January 21, 2016 [9 favorites]

This ACES thing - I've so often thought that the fear and stress that I experienced every day between about eight and sixteen must have marked me health-wise, because I remember how I felt physically back then. It wasn't just being sick to my stomach from anxiety; it was the constant adrenaline and hypervigilance. I've had problems with hypervigilance all my adult life, problems being in small spaces with strangers (elevators, primarily; it's better and worse from day to day); problems eating in public or having my back to a group. I figure that a lot of my introversion is actually simply because even now it's still so stressful for me to be in public that I am just happiest in my room with the door shut.

Sometimes it really makes me angry that all those fucking awful people who bullied me so badly - for years and years! every day! - and all the adults who either went along with it or turned a blind eye, that they really got me, that they broke me on some physical level, shortened my life, messed me up, just like they wanted. It makes me feel like they won, when most days I can feel like I won, because I got away and never have to go back, and I don't share their stupid, banal, mean-spirited "values" or live like them.
posted by Frowner at 7:27 PM on January 21, 2016 [10 favorites]

Article blew me away. It and the discussion of ACES are both sitting heavy in my mind.

I've always felt that whatever doesn't kill you makes you stronger. At the very least emotionally -- and after my life experience, particularly in the last 18 months, I'm *this close* to having it tattooed on my wrist because I know my experiences have made me stronger. But that is so far from being the full story and this article helps me see that.

I've written about this on Metafilter before: I'm deaf -- diagnosed at age five and my hearing disappeared by my late 20s. I got a cochlear implant ten years ago (almost to the day -- next Monday is my tenth "second birthday"). My body gives me problems. Not PCOS, endo, chronic fatigue-level problems, but I am fructose and lactose intolerant and my gut flora is not in the greatest of shapes. I also tire easily and my hyperextensive joints mean I have back issues that prevent me from exercising to the full extent I'd like. Then there's the depression and anxiety, part of which I know I can attribute to family history (in the context of this article, I feel compelled to point out that there is a history of mental illness in my family).

I've been trying to get my doctor to agree that the cause of my body issues is the intense stress on my body of being deaf and pushing myself to my limits to hear before I got the cochlear implant. They've always brushed that off and said "not possible, it's all medical".

Frowner, your comment captures something I've always known but rarely articulate -- I'm not "normal" but I spend most of my waking life trying to present myself in a way that appears as such. I'm lucky I am married to a man who very happily and passionately flies his freak flag because I've learned so much from him about being myself in more of my life. But even he can't understand why I need to sleep so much.

I feel very provocative, I've sent the article to my parents and brother and made it required reading for them. I'm kind of wondering how they will react.
posted by prettypretty at 7:46 PM on January 21, 2016 [4 favorites]

For those interested, the CDC has a good page on the ACES study.

Also see this article:
The Lifelong Effects of Early Childhood Adversity and Toxic Stress

Finally, if you prefer videos:
TED - Nadine Burke Harris - How childhood trauma affects health across a lifetime.

Or the video for child care providers/health professionals.
posted by typecloud at 6:33 AM on January 22, 2016 [2 favorites]

I am having some deep and timely feels about this post and the article and comments. But I'm too busy trying to take care of myself to attempt my usual inept articulations. So...

Sick Fist!
posted by monopas at 12:49 PM on January 22, 2016 [4 favorites]

Big yes to this. Big yes.
posted by maxfenton at 4:42 PM on January 22, 2016 [1 favorite]

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