Tag Archives: chronic pain

Missing Bodies: Where Are Disabled Women in the Body Positivity Movement?

Line drawing of Anna with devil horns. A speech bubble proclaims RAAAWR

This essay was originally posted on Disability Intersections in 2014. Since then, there has been a lot of (rightful) criticism of body positivity–read Evette Dionne’s “The Fragility of Body Positivity” and Amanda Mull’s “Body Positivity is a Scam” for more. 

Love your body! Stop hating your body; start a revolution! These are just a few of the popular third wave slogans that are fairly well-entrenched as directives, or at least as aspirations, within feminist activism both online and off. There’s Love Your Body Day, sponsored annually by the National Organization for Women (NOW), Love Your Body weeks on various college campuses around North America, and thousands, if not millions, of web pages, graphics, and digital art pieces online that celebrate this theme and encourage women to do so every day. Many liberal feminists have proclaimed that body image –and a matching emphasis on loving your body–is “the” issue for the third wave, as this widely-anthologized essay by Amelia (Amy) Richards explores.

At a basic level, LYB discourse can be a positive thing, and it’s often a good stepping-stone for women who are new to feminist ideas. But it’s this very basic quality that can limit–and does–which kinds of bodies are acceptable to reclaim, have pride in, and even love. A cursory Google search for “love your body” brings up a plethora of images of white, visibly abled, young, cisgender, straight, and/or acceptably thin women encouraging other women to love their own bodies. From this cursory Google search,  I found one image–-the NOW Foundation’s LYB 2009 contest-winning poster designed by Lisa Champ-–that shows a variation on the woman clip-art symbol with a (visible) disability. This single image (now offline!) was more than I was expecting to find, but even with this limited representation, there are still problems in how LYB discourse is built for and around abledness–not least of which is its leaving out of disabled bodies. The complex relationships that many women with disabilities of all kinds have with their bodies are left out as well.

Many of us who have disabilities, chronic illness/pain, or mental health issues actively struggle to love our bodies for a whole host of reasons. Disabled bodies, unhealthy bodies, sick bodies; like other bodies that deviate from the “norm” (that is: white/abled/cis/acceptably thin) that liberal feminism so often reinforces instead of dismantling, our bodies may be accepted by feminism, and other feminists, at a surface level, but when it gets down to the nitty-gritty of what loving non-normative bodies actually entails…well, feminism doesn’t know how to deal with that.

To use a personal example: I look like your “average” youngish white feminist. While I’m not thin, I’ve never had a stranger comment on the overall size of my body, my eating habits in public, or my clothing in the way that people so often comment on the bodies of fat women.  (When I do receive unsolicited advice, curiosity, or commentary from strangers, it is usually about one of three things: my pronounced limp, my cane, or the size of my breasts, although those are stories for another post.)

With the exception of my use of a cane, I have a body that is able to fit in reasonably well when I’m in public. Take away my cane, and I might resemble what an average person might expect a “young feminist” to look like.  Here, too, is where I  depart from all of the well-meaning messages in love your body campaigns. My average appearance and weight are the easiest things to accept about my body, but my disabilities? Less so.

My body itself is in constant pain, and is usually fatigued, thanks to fibromyalgia. I don’t like being in pain all the time; in fact, part of my medical treatment is dedicated to reducing this pain via the use of certain medications. On the other hand, being in pain has shaped my personality in a variety of ways. Having fibromyalgia is not “empowering” in the usual ways that LYB discourse demands of bodily acceptance for women.

Oftentimes, fibromyalgia is horrible. But having it has also made me a fiercer advocate for equal rights for people with all types of disabilities, access to proper pain management for people with chronic pain (many of whom suffer from pain on a daily basis), and related causes. I’ve also been experiencing mysterious and severe allergic reactions for over a decade; these do not happen every day, but when they do, they are usually debilitating.

What qualities are we supposed to love about our bodies, anyway? I am grateful that after an allergic reaction, my face reverts to its “normal,” non-puffy look after 12-24 hours, mostly because the swelling around my eyes often does not allow me to see very clearly (and is also uncomfortably itchy when it happens). I appreciate the fact that during a reaction, my body tries to get rid of whatever’s caused that reaction–but this doesn’t mean that I have to love sitting on the toilet for hours while my intestines empty, and as I become increasingly dehydrated.

LYB discourse instructs us to to love surface things about our bodies: skin, limbs, stomachs, thighs, hair, freckles. . .the list goes on. Or what “our” bodies can do: run, jump, hike, exercise, dance, appear strong; again, it’s a long list. Many bodies can do all of these things and more. But what happens to the bodies that cannot do these things?

Despite having to work around the fibromyalgia to do so, I am able to exercise, but if I decide to go on a two-hour hike on a whim in addition to my carefully planned exercise routine of daily yoga and walking my dog, that addition is going to land me in bed for a few days, and I’ll be in too much pain to move during that time. The call to love your body and celebrate your body, in those instances,  rings hollow to me. I can’t even get out of bed, and you want me to sing kumbayah in celebration of my body? Some days, I’m in terrible pain even though I didn’t do anything to exacerbate my existing pain levels. There are a lot of things that my body cannot do because it’s in near-constant pain, but I’ll be damned if feminism even comes close to acknowledging that, because it never does.

Loving your body at such a surface level is all well and good when you can run and jump and not be bedridden for days afterward, but try explaining what chronic pain feels like, day in and day out, to a healthy love your body-supporting feminist and see how fast she screws up her face, as if to say Why are you telling me this? Feminism has traditionally been terrible at validating women who have complicated relationships with their own bodies, and LYB discourse is merely a pretty pink symptom of feminism’s–and feminists’–inability to accept, or even barely tolerate, any experience of the body that can’t be spun into New Age-type rhetoric having to do with loving oneself against societal odds, or triumphing over the odds. Gender and disability oppression combine into a toxic goop here, and the resulting mix can start to resemble the second-wave anthem “I Am Woman” combined with Supercrip.

During allergic reactions, I hate my guts that keep me confined to bed or to the bathroom, my ballooning face that begins to horribly resemble the moon in A Trip to the Moon, my lungs that feel like they’ve magically shrunken to the size of quarters for no apparent reason. Very often I hate my fibromyalgia-ed muscle fasciae because they make me physically hurt. I hate the sensation of fatigue that makes me feel like I have a tremendously heavy coat on, in addition to the pain. The thing that many feminists do not understand is that these feelings aren’t caused by the media, by fashion magazines, by impossibly thin models and actresses, by advertising-–no, not even by Big Pharma!

LYB grossly oversimplifies the problem of women’s self-hatred, reducing it to a sort of you just need to try harder pseudo-New Age self-improvement goal that pits “women” as a group-–really middle-class, abled, youngish white women–-against oppressive, sexist social and cultural norms, advertising, and so fourth. But it does not teach women to be accepting of sick bodies, disabled bodies, bodies that don’t work perfectly; much of it is merely another air-thin platitude to which to aspire in order to attain self-acceptance. LYB discourse has even been corporatized; look no further than recent Special K cereal ads so bravely proclaiming “NO FAT TALK,” and those insipid Dove soap campaigns that are supposedly so “body-positive” for proof. Such a corporate vision of “positive” body image only offers body acceptance and self-love as goals for a very specific type of body, as scholar Sarah Heiss convincingly argues in this 2011 article from Disability Studies Quarterly.

It’s not so outlandish to ask whose bodies are positioned as worthy of love, of self-acceptance, of peace in LYB discourse. If you already look like the young/white/cis/abled/average-sized woman for whom these messages are designed to appeal,  body acceptance is probably easier for you than it might be for someone who doesn’t fit into one or more of those categories. I am not trying to dismiss the body image struggles of women who do fit into those categories, often through no fault of their own–it’s just that, like a lot of things in mainstream liberal feminism, LYB messages are made to appear inclusive without actually doing that work in any substantial way.

And when this appearance of inclusivity makes disabled, sick, and invisibly ill bodies not appear outright, well, after a while that’s how you end up with healthy, nondisabled feminists who just don’t understand why disability rights are a feminist issue, or who don’t get why women with pain, fatigue or other chronic health issues can’t just love their bodies instead of letting physical or mental problems and/or what the media says about disabled bodies (and the bodies of disabled women) affect them so much. Or they ask how disability pride could possibly exist since disability always creates “suffering,” as Sierra at RH Reality Check does in this article–-because shouldn’t eliminating disability be a goal for a more feminist and pro-choice world? (You can probably guess my answer to that question.)

In their insistence on uncritically parroting and supporting LYB discourse as it currently exists, some feminists inadvertently reinforce the idea that certain bodies are easier to love–and, conveniently, many of them already fit into what the mainstream designates as worthy of acceptance and love. Those with complicated bodies, ill bodies, disabled bodies–and the attendant complex relationships with their own bodies–are often not so lucky.

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Nervous Systems: Chapter 3–Fibromyalgia (and Afterword)

Previously: Chapter 1; Chapter 2

Image descriptions can be found under the read more tag.

NS-page23

Continue reading

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13 Fibromyalgia Moments

naturalhabitat

In my natural habitat.

  1. I slept in until 10:30 this morning, but am ready to go to bed right now. It’s just after 9:00 PM. This feels like a failure, somehow.
  1. Wikipedia defines fibromyalgia as “a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include feeling tired to a degree that normal activities are affected, sleep problems, and troubles with memory. Some people also report restless legs syndromebowel or bladder problemsnumbness and tingling, and sensitivity to noise, lights or temperature.” Fibromyalgia does not sound so bad, defined this way. Any person with the condition, however, will tell you that it is much worse than this definition makes it sound.
  1. Something a lot of people do not understand about chronic pain is that it is constant. I am always in some kind of pain. Some days, my pain level is a 1 or a 2 (those are great days); some days, it’s an 8 or a 9 (usually because of rain, or because I did too much, exercised too much, or overcommitted myself the day before). Most of the time, my pain level is between a 4 and a 6. The rock band Hole titled their 1997 compilation album My Body, the Hand Grenade. My body is a land mine that can detonate internally—touch it the wrong way, and it will explode with symptoms.
  1. Even the number scale doesn’t really cover the symptoms that I deal with on a daily basis: pain (it usually feels like I’m wearing an overcoat of bricks), fatigue that feels like I’ve taken at least 4 Benadryl pills, and very strange symptom trinkets like nausea and dizziness, the skin on my face getting extremely hot, and/or feeling like the soles of my feet have been lit on fire. There are more weird symptoms, but listing them could be an entire piece in itself.
  1. The pain itself can take certain forms other than the aforementioned overcoat of bricks: burning, biting, pin-and-needling, scratching, dull aching, shredding, or, my least favorite, pulling. Pulling pain feels as if my bones and muscles are being pulled toward the ground, like gravity decided to weigh on just me a whole fucking ton.

Most of the time, my muscles are as tight as closed fists; this gives new meaning to the phrase tight body.

  1. When the less-common shredding variety of pain occurs, all I can think is, This would be what pulled pork would feel like if it were able to feel.
  1. When I was first diagnosed with fibromyalgia, in 2007, I thought that the name of my new disorder sounded like the name of a gross fish that swims along the bottom of the ocean and eats dead things. That, or the name of a character from George R.R. Martin’s A Song of Ice and Fire series: Lady Fibromyalgia of House Musculoskeletal. Unfortunately for me, it was, and is, neither.
  1. A close relative asked me during a phone conversation, “When you say you don’t have the energy to get out of bed, what do you mean?” I didn’t know how to make the language of that statement any more plain.

I mean that I do not have the energy to get out of bed, I replied.

  1. There have been times when I have attempted to read—to distract myself from my symptoms—and the words look like they’re starting to march off the page. This is one of my indicators of level 8-plus pain or severe nausea.
  1. I have a lot of guilt about not being able to do certain things, especially if social activities with family or friends are involved. Are they thinking If she would just [______], she could make it to the party/art opening/camping weekend?

My partner is quick to reassure me that family and friends would much rather see me when I am feeling well, and that it’s important for me to take care of myself. Despite my frequent worry about this topic, his reminders help. But the expectations that “nice” women are up for anything, are cheery, social, ever helpful, able to go to parties and events, look pretty at all times, be charming and friendly and talkative and make other people comfortable by not showing that they’re upset, annoyed, in a funk, or (in my case) in pain at all–still haunt me.

  1. I cannot remember what it is like to not be in pain. Even being at a level 1 or a 2—usually thanks to medication—seems strange to me. Being in at a low level of pain always feels like I am in another body, like I’ve borrowed someone else’s body for a little bit.
  1. If I had to choose a superpower, I would want to be able to projectile vomit rotten sauerkraut onto people who say that fibromyalgia does not exist, that there is no “physical evidence” for it, that it’s a women’s disease, so we must be making shit up.

The central idea in this attitude, as with the skepticism surrounding chronic fatigue syndrome, chronic Lyme disease, and more—is that women who have any of these “mysterious” diseases must be exaggerating their symptoms for attention, embellishing descriptions of their daily pain to get drugs, or dumb enough to have been convinced by drug ads on TV or news articles or WebMD that they have these “made up” diseases. There’s a pervasive cultural idea that men’s pain should be taken seriously—if a man is in enough pain to visit a doctor, he must be in real pain. The other side of this coin is that women’s pain should not be taken seriously—a woman in pain who’s concerned enough to visit a doctor for treatment might be just hysterical or anxious.

  1. Every single thing that I do is affected by pain, and I have to live my life accordingly.

To people who do not have chronic pain, this sounds like I have given up. To me, it sounds like common sense.

 

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raindrops

rainisapain[Description: Two-panel line drawing of a rainstorm. In the first panel, text on top reads “Other people see rain…”; the accompanying illustration shows a happy person wearing a raincoat and saying “Good thing I have my raincoat!” The second panel has top text as well, which reads “I see rain…”, and this panel’s illustration shows the cartoonist standing in the same rainstorm, with knives of varying sizes replacing raindrops. The cartoonist’s speech bubble reads “SHIT” as straight lines on both of her shoulders signify intense pain.]

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Self-Perception vs. Reality

[Description: Four-panel cartoon; first panel is labeled “Self-Perception and features a line drawing of Annaham happily gobbling pills while excitedly saying “PILLS!”; the other three panels come under a heading that reads “Reality.” The second panel features Annaham grasping a bottle of pills in one hand and a single pill in the other; a thought bubble reads, “If I take this for pain, does that mean I’m an addict?” The third panel depicts Annaham with a worried/pained look on her face, plus a thought bubble that reads “OH FUCK.” The fourth panel pictures Annaham lying on the ground in obvious pain as tears flow from her eyes. A thought bubble reads, “If I take pills, I will become addicted. WILLPOWER.” The text at the bottom right of this image reads “5 minutes later.”]

Variation on a theme. Click for a higher-quality version; I’m not sure why WordPress shows the image as horribly pixelated and I can’t seem to fix it.

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Makeup post: Urban Decay 24/7 Eyeshadow Pencils

[Description: Photo of four eyeshadow pencils of various colors.]

I need to take a moment to rave about Urban Decay’s 24/7 Shadow Pencils ($20 US) and how fantastic they are. These are basically eyeshadows in pencil form, and I’ve found them extremely useful, but perhaps not for the reasons you’d imagine.

As most readers of this blog know, I have moderate to severe chronic pain and fatigue issues due to fibromyalgia. Cosmetics, for me, are usually not an “everyday” thing (save for lipgloss or lipstick, because those take about 15 seconds to apply if I’m not doing anything fancy) because of the time that it takes me to do a “nice” makeup job. More often than not, the time it takes for me to do “nice” makeup translates into lost energy and/or more pain. Pain due to repetitive motion is one of those things that is outside the realm of most abled peoples’ experience, but on my bad days, putting cosmetics on–and screwing it up, and more often than not having to start all over again–can be physically painful. And yes, some people may be thinking, “Yeah, RIGHT, putting on eyeshadow can’t be that painful!” For me, though, it can be, and I’m sure a lot of people with fibro would say something similar. Just try putting on makeup when your arm feels like it’s been weighted down with a huge piece of iron. After a certain point, it just doesn’t feel worth it anymore, particularly if you’re in a lot of pain and yet you keep making mistakes with makeup application because you are in pain. Parts of it seem very chicken/egg.

Enter the UD 24/7 pencils. One or two swipes of the pencil is all it takes, and the actual shadow component of the pencil is large enough that it’ll cover your entire lid (downside: can lead to some imprecision). Granted, these aren’t going to completely prevent pain from repetitive motion, but the one or two swipes and you’re done thing is a huge improvement over having to apply eyeshadow primer, then apply shadow with a brush, then do it again if you screw up, then clean the brush(es) after you use them, et cetera. I haven’t tried blending these yet (and once I do, I’ll write about the results), but I will probably end up getting a few of these because they are awesome. I have the one in Sin (a very shimmery pink champagne/beige shade), and would like to try Barracuda (black with silver shimmer), Delinquent (shimmery eggplant purple), and Mercury (gunmetal gray). If you have chemical sensitivity issues, I am not sure if these would be appropriate given the list of ingredients (scroll down the page for ingredient lists; each pencil may contain different pigments and such).

In short, these things are awesome, and I highly recommend that you give them a go, if you’re so inclined.

[A slightly different version of this post appeared on my Tumblr.]

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Quick Signal Boost: BADD 2011

I haven’t been able to put together a post for Blogging Against Disablism Day (BADD) this year due to other commitments, but be sure to go check out the list of this year’s posts, compiled by Goldfish at Diary of a Goldfish. As with other years, I am sure that there will be many excellent and thought-provoking posts!

I’ve contributed to BADD in the past, so now may be as good a time as any to drop some links: a poem, a bingo card, the first bingo card (cross-posted at FWD; not for BADD, but perhaps necessary for context of card #2).

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