You might remember Rebecca from her awesome guest post about the children’s book I Get So Mad. You might have read her children’s book posts (part 1 and part 2) at Shapely Prose as well! I’m so glad she’s back with another post for us, this one on the way fat and disability intersect for her in a very personal way.

I love HAES, and I try to do it. I eat the foods that make my body feel as good as it can, and I exercise the amount that makes my body feel as good as it can.

You might not guess that if you were tracking me. I eat a high proportion of animal fat and animal protein – at every meal. If I don’t, I end up in screaming physical pain. (Not exaggerating.) I’ve tried every non-meat food and food combination under the sun, in order to try not eating all that meat. Nothing else works.

Also, I can’t exercise much. On a good week, I can manage two or three short walks. If I exercise more than my spoons allow, I end up in bed for days, in severe pain, with fevers and chills, unable to read or understand sentences. For my body, energy can’t be generated by exercise, and exercise can’t build upon itself.

Sometimes it’s a bit oppressive to live in a culture that believes that regular exercise always leads to a higher exercise capacity. That’s not true for everyone. Because I have CFIDS and fibromyalgia, I’ve been perceived as lazy and deluded. I’ve been perceived as malingering, even when I’m doing everything I can to live the fullest life possible.

Some of the garbage thrown at disabled people is the same garbage thrown at fat people. Pain flare-ups from massage are common for CFIDS patients, but I was once told by a massage therapist that the subgroup of her patients who’ve had bad physical reactions to her massage is the same subgroup of her patients who “want to be sick.” A recent article quotes a doctor saying, “‘The problem is that most of those people [with fibromyalgia] are very difficult patients.’” Sound familiar, anyone? Fat folks receive the same blame, the same labels of “difficult.” (If we weren’t difficult we’d have laid off the baby-flavored donuts already and become thin.) Both groups are told we’re lying about our body’s physical workings.

Some of my personal fatness/disability intersections are hard to navigate. When people see me eat but don’t know I’m sick, they may well think I’m a typical fat person eating typical FATTEH FOODS. I hate to feed (snork!) into that stereotype, but because I believe vehemently that a fat person should be able to eat whatever they want whatever their health, I don’t “excuse” my foods – even though the excuse could bank some serious mainstream credit.

Another challenge occurs when people who do know my illness’s needs offer me a kind of “free pass” for being fat. ARGH! No one’s fatness needs a “pass.” The people offering the pass assume that if I weren’t sick, I’d not be fat. But there’s no way to know that, and frankly I don’t much care. Fatpol has been in my heart and soul since long before I was either fat or disabled.

I am white, and although I work ongoingly on identifying and challenging my white privilege, I’ll always benefit from it. I also benefit from my illness being mostly invisible (and when visible, probably resembling the flu) – I’m not subject to the insta-prejudice that visibly disabled folks receive. Those are two ways that my body conforms to society’s prescribed ideal. On the other hand, CFIDS’s invisibility opens the door for some rather soul-crushing suspicion from the world at large as to whether I’m really sick.

There’s one way in which being sick and in pain every day for fifteen years makes fatpol a little easier for me. I appreciate what my body can DO. I’m so euphoric on days when I can take a walk or cook a goulash that residual insecurity about fatness wafts away on a breeze of triviality.

On the other hand, it’s a strain to embody a double societal violation of agency and aesthetics. My body threatens the notion that a person can do anything under her own steam, that we all have individual agency over our physicality. My existence disproves bootstraps.

Thinking we can completely control our health has a quality of bargaining with God or performing magical rituals. Of course there are healthful actions people can take. But the degree to which those actions succeed, especially given the myriad other factors in everyone’s life, is often complex and untraceable. I dislike how attainable “health” is portrayed to be. A term used in some disability communities to describe non-disabled people is TAB – “temporarily able bodied.” Just a reminder that anyone can become disabled.

Even HAES sometimes pokes my heart a little. I love it – I do – but sometimes it’s colored by the religion of health that our culture holds so dear. Sometimes we forget that health is elusive to find, elusive to keep, elusive even to define. Sometimes morality flavors our HAES movement even when we don’t mean it to.

HAES shouldn’t foster superiority. Where is the line between strongly supporting everyone being as healthy as they can be, and defining health as something a person should try to be? Where is the line between health aspects that are our choice, and those that aren’t? Where is the line between valuing health, and subtly placing less value on those of us who aren’t healthy?

Often even the liberal side of HAES encourages working towards “your OWN standard of health” for “you as an individual.” This is wonderful, but even my own “standard of health” is unreachable to me. The individualness of HAES isn’t just about different people having different health goals and values; it’s about different bodies having materially different abilities. Don’t assume that a disabled person can exercise or that they can’t, or what their HAES is.

Being disabled is supposed to be shameful, and I’m not always immune to that. Sometimes I catch myself worrying that my sickness is a shame because it’s harmful to fat liberation – like I’m not “representing” fatness well enough to the outside world. But that’s hooey. My sickness is a shame because it makes me sick; and it’s *a* shame, which is not the same as shameful. Fatness is neither – neither shameful nor a shame. My best spirit days are the days when I can say FAT CRIP with a big grin.

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  1. Elizabeth
    Posted December 9, 2008 at 10:46 pm | Permalink

    Great post! My mother is going through a similar struggle–she has a progressive neurological disorder that means if she over-exerts she is in danger of permanently lowering what she is capable of doing in the future. Even though she knows this, it’s a constant struggle against the societal “just push through it” mentality. (I always remember than gymnast in the Olympics landing on her broken ankle–not my decision to make, of course, but I was always creeped out by how this was supposed to be some ideal example of bravely ignoring physical pain that we were all supposed to aspire to.)

  2. Erin
    Posted December 10, 2008 at 3:10 am | Permalink

    Good thoughts! You’ve given me something to turn over in my brain. I hope to read more from you, Rebecca.

  3. Posted December 10, 2008 at 6:42 am | Permalink

    Thank you for writing this. I hope it is published in some sort of reader where people can read it and keep it on a bookshelf and read it again and again, whenever they need to read it. I suppose wishing it to be in a book just reflects my own prejudice in favor of books but there it is, I have that prejudice. Thanks for including the link to the spoons story/theory/metaphor. This essay you’ve written is a perfect example of the famous academic intersectionality — fat studies/disability studies. Thank you for writing this. When I’m too tired to expalin things I’d like to be able to hand people this essay. I’d sit and rest while they read it. Thanks.

  4. Posted December 10, 2008 at 7:06 am | Permalink

    My mum when she was first diagnosed with fibromyalgia had to deal with a coworker who told her that she’d heard that people with fibromyalgia just need to exercise more (incidentally, the thing that clued my mother in that she needed to see a doctor was that for several months she had been doing aerobic exercise nearly daily and feeling quite physically good afterwards, and then one day instead of feeling good she couldn’t move for about a day). People can be very arrogant about other people’s health.

    This was a great post, overall.

  5. Posted December 10, 2008 at 9:59 am | Permalink

    This is a fantastic post–I especially appreciate what you have to say about agency. Using that term in this context realy clarifies some things I’ve been thinking about in terms of our cultural fear of disability–thank you!

  6. Dorothy
    Posted December 10, 2008 at 10:09 am | Permalink

    Bless you for writing this. I really wish you didn’t have to be in pain, however, I’m grateful to you for expressing something that many of us deal with. I have quite bad arthritis (osteo) and am in pain almost constantly and am unable (sometimes just *unwilling* because of the extra pain) to do much exercise. Also, when I do exercise it doesn’t seem to make me feel much better though, unlike you, I can slowly increase the amount of exercise I can do. I’m also chronically fatigued – I’m not real sure why. Part of it seems to be the sinus infection I’ve been dragging around with since May – I finally ordered some antibiotics from (they’re also cheaper than US meds on some things) and I’ve felt a bunch better though the infection isn’t gone yet. My doctor won’t prescribe antibiotics so that’s why I didn’t get any from her. It’s hard to go to work each day and to make it through the day and I mostly just go to bed early when I do get home. I don’t, obviously, have things near as bad as you do to cope with but I do get so, so *tired* of coping.

    I’m also real tired of our new “religion” of health and thinness. One of my bosses is into weightlifting and eating “healthy” and I know he feels utter contempt for me because I’m fat, don’t work out, and am sick a lot (though I rarely stay home from work)(of course he’s also contemptuous of women period). Thanks to FA and posts like yours I do realize that it’s not my fault that I’m not thin and healthy but it’s hard dealing with the fall-out from people who think if I just “ate better” or ate the “right” things and exercised I’d be healthy and thin (and, no doubt, would never, ever die…).

    Thanks again for the post!

  7. TR
    Posted December 10, 2008 at 10:25 am | Permalink

    Dorothy – have you considered getting a new doctor? A doctor who refuses to prescribe antibiotics (in some cases, certainly, we don’t need them but in the case of a sinus infection that has been going on for months?) doesn’t sound like a doctor who is looking out for you.

  8. Dorothy
    Posted December 10, 2008 at 12:03 pm | Permalink

    TR – She’s actually pretty good except for the “sinus infections clear up by themselves” bit and it’s the Clinic’s policy not really *hers*. She listens to me and believes me when I tell her I need a higher or lower dosage on meds and she’s good about doing things as cheaply as possible since she knows I don’t have much money. I didn’t even realize I’d had an infection for that long – until I started the Cipro and felt so, so much better. I have chronic sinus infections so she was prescribing antibiotics for a while but, like a lot of practices they seem to worry you’ll take antibiotics too many times and diseases will build up a tolerance to all the antibiotics. Now, perhaps the pharmacutical companies could stop experimenting with “obesity” drugs and start producing new antibiotics…Nah! ;-)

    Thanks for asking, though, I really appreciate it.

  9. Posted December 10, 2008 at 12:12 pm | Permalink

    Wow! This is a great post. I’ve done a lot of reading lately on Lyme disease and gluten intolerances. I also work with people on dialysis who have huge food and fluid restrictions and are often fatigued after their dialysis treatments (3 days out of 7).

    Figuring out what your body’s limitations are and honoring that is huge. Unfortunately, our society, in general, does not tolerate the idea of limitations well, as you’ve so aptly pointed out.

  10. Posted December 10, 2008 at 12:14 pm | Permalink

    Thank you for this post. This was very timely for me to read! I have rhuematoid arthritis and read your spoon theory a while back, and loved it. That was you, right? Anyway, glad to see that you are still writing about chroinic pain.

  11. Posted December 10, 2008 at 4:00 pm | Permalink

    @Erin: I do lots of political blogging, so if you don’t mind that most of it is in the context of children’s books, you’re welcome over at my blog.

    @Susan: Wow, thank you, I’d LOVE to be in a book. This is my first foray into writing about disability. I’ve published several articles and anthology chapters in books, but always about children’s lit and either fat studies or queer theory. If you know of an intersectional disability book that might be a good match, please let me know!

    @Mothering Two: the spoon theory is not mine, it was written by Christine Miserandino. I love it too, though.

    @everyone: thanks for all the kind words.

  12. Posted December 10, 2008 at 5:07 pm | Permalink

    Just wanted to say thank you – this was a very evocative post – made some of the difficulties and contradictions we all struggle with so much more vivid. I’ll be watching for more writing from you in the future!

  13. Mel
    Posted December 11, 2008 at 9:50 am | Permalink

    Thank you for this post and the link to the spoon theory. You’ve articulated so many things that I have trouble expressing.

    With PCOS, chronic depression and anxiety, daily back pain, and carpal tunnel issues (wow, I’ve never written that all out before without feeling like a total hypochondriac- no wonder getting anything “done” is so difficult), I struggle a lot with disappointment and guilt that I’m not doing more to live the life that I really want. I always feel like if I just tried harder, I’d have so much more, but really- some days, there’s just nothing left to give. Just once, I’d like for a doctor to ask me how I’m feeling and if it’s comfortable to exercise, instead of giving a blanket, you’ll feel better if you exercise and cut back your calories. Thanks doctor, as a recovering bulimic, please give me unsolicited guilt about eating. I felt 10x worse than I do now when I was restricting my calories and binging/purging, but I was thin and praised for it. Now, I eat the food of my dreams- fresh meats, fruits, and copious amounts of grainy/nutty cereal that my parents said was too expensive when I was a kid- and absolute love every bite of the 2200+ calories a day that *my* body needs, no matter what anyone else tells me. But on the days that I feel low and in pain, whether mental or physical, I don’t feel the slightest bit guilty about having a big handful of chocolate chip cookies and a chili dog for dinner. It’s all ok. It’s just food.

    Anyway, thanks again for this post and the reminder that I need to scale back my expectations and prioritize what really needs and deserves my attention.

  14. Jackie
    Posted December 11, 2008 at 3:28 pm | Permalink

    I understand what you’re saying about all you’ve had to go through. As far as doctors complaining patients are difficult, well maybe they shouldn’t be doctors then.

    I mean when did it become a normal part of having a profession, to whine about your patients all day. It’s like either you’re a responsible doctor, or a bratty kid whining all day long about how hhaarrrddd everything is and how it’s not ffaaaiiirrr.

    There was this wonderful yet sometimes sad documentary I saw about Chronic Fatigue Syndrome called I Remember Me, here’s the link to it on Amazon:

    If you have Netflix I believe it’s available for instant viewing.

  15. Posted December 11, 2008 at 6:22 pm | Permalink

    I blogged about this post but I don’t know if the trackback thing worked so I also want to leave a comment here telling you how awesome and important what you are saying is. I spent a couple of years in a condition where I felt worse for up to 48 hours after exercising. In my case it turned out to be anemia rather than CFIDS, but it made me very aware of the ways that the standard prescription for health does not work for everyone.

    Another lesson I had recently along the lines of “one health does not fit all: I had a kidney stone. The urologist told me to follow a low oxalate diet. Guess what I am not allowed to have if I follow this diet? Leafy green vegetables, especially spinach — precisely what the government thinks everyone should eat a dozen servings of every day.

  16. Posted December 13, 2008 at 4:38 pm | Permalink

    =D You’re the best fat crip I’ve ever had the pleasure of reading about, 100%.

  17. Linda
    Posted December 26, 2008 at 4:37 pm | Permalink

    Nothing worse than being an informed person who works hard at achieving one’s best personal state (in dealing with one’s body) and being labelled as “difficult” when doing that. Thanks for a great read!

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