Category Archives: Uncategorized

Ableist Word Profile: You’re so OCD!

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

Someone walks into my kitchen for the first time looking for something they will more than likely find the cupboards nicely arranged.  I like things with the labels facing out, neatly lined up, dressed to the front.  I like to have like items together (my cooking items are in a separate area from my baking items, and snacks, to begin to scratch the surface) to make it easier to find things.  Our Korean apartment is smaller than we are used to in some areas, so being organized is a must when it comes to storage.  We have Tupperware canisters lining the counter tops with frequent used and bulk items in easy reach, and also in the fridge w/ the produce already prepped.  When we bring meat home from the market we divide it into portions and vacuum seal it before storing it.  Some of this is for space sake, some of it is because I like to cook and will use spoons I sometimes steal from elsewhere to do so, and having the kitchen arranged as such makes that easier.  I have had more than one guest wander through the kitchen chuckling and mention to me how OCD it is (which really doesn’t make sense if you think about the acronym).

No.  My kitchen is clean.  It is neat.  It is sometimes meticulous (when the dishes are done), it is user friendly, well organized, color coded, over-the-top arranged, even.  My aunt would say you could eat off of my floors (some days, but we do have a seven year old).

OCD, or Obsessive Compulsive Disorder, isn’t just the tendency to keep things all tidy like Mary Poppins on a sugar rush.  It doesn’t mean that you like your clothes hung in chromatic order or your socks folded a certain way, or even that you sort your M&M’s into color groups before eating them.  It isn’t your friend with her dust free home or Bree VanDeKamp hair or Emily Gilmore six-inch tapers.

It does mean that you tend to have thoughts (obsessions) that intrude into your mind and make you extremely uncomfortable, because you know that they are unreasonable.  Some people have thoughts where they hurt themselves or their loved ones.  When I was much younger I once had repeated visions of shoving a corkscrew into my eye while at the bar where I was working.  Understandably it was bothersome, and actually there were times that it worried me to tears, because I knew I wasn’t going to shove a corkscrew into my eye, and I couldn’t figure out why my brain was giving me that picture.  People often engage in repetitive actions (compulsions) to alleviate the stress of these thoughts.  I wiped bar glasses and liquor bottles until they were spotless, and later at home plucked my eyebrows into oblivion because they were never quite symmetrical.  I brushed my teeth until my gums bled…anything to keep my mind off of that fucking corkscrew.  In your mind you know that having washed your hands or brushed your teeth fifteen times before school has probably already taken care of any germs (and skin or enamel), but you can’t get the thoughts of those germs gone.  So you brush, or you wash.  And you still think your hands are covered in bacteria or you can feel your teeth rotting in your head (even though you know it isn’t true).  So you wash again…and you miss that first class…even though you know better.

It overcomes your life.  OCD isn’t just some cute little habit you have of always placing everything on your desk perpendicularly or always lining shoes by the door. It actually interferes with your life and how you are able to live it.

When I was in college I knew that I wasn’t going to blow up my apartment.  My rational mind was well aware of that fact, even though I could see the building on fire and me standing outside of it.  But after cooking, when I had to leave for class, I had to go over to the gas stove and turn all of the dials on to make sure I had turned them off…even if I hadn’t used them.  The oven too.  I just couldn’t stand the thought of leaving the gas on and having something happen to my roommate while she slept.  Then I would grab my bag…and even though I knew I had just. checked. the. damned. knobs.  I had to go back and check them again.  After this I might get out the door and lock it, but then I’d have to go back in and check again.  The next time I might make it all the way down to the main door of the building.  “What if you missed one?  You could blow up the whole building!”.  Back up three flights of stairs, unlock the door, and check the knobs again.  Of course they were fine, just like the last three fucking times I checked.  That didn’t stop me from having to go back two more times, once after thawing my car, and once after I had actually left the parking lot, made an illegal U-turn, and gone back.  I kept seeing the whole building go up like a giant bonfire on a July evening in Michigan.

I was two hours late for class.

I was obsessed with numbers.  If I had pieces of something I couldn’t eat it unless it could be divided into odd-numbered groups of odd numbers.  My weight became an obsession, which isn’t at all uncommon in people with OCD, and no matter how much I lost I was certain that I was disgusting and fat and gross to everyone who saw me.  I actually measured “ins” and “out”, and I will leave you to those pleasant details all on your own.

Years of therapy later I am able to find myself in a place where I can control my OCD, and I have come a long way in managing it.  This isn’t true for everyone, because each of us are unique and what worked for me isn’t going to work for the next person.  I am by no means “cured”, but there is something to be said for being in a stable home environment for the first time in my whole life that has turned the corner for me.  There are things that will cause me to slip…

Some other fun facts about OCD.

There are some lesser known offshoots, such as Trichotillomania and Dermatillomania.  These conditions begin with the same intrusive thoughts, but instead manifest with compulsive hair pulling and skin picking.  I have both of these conditions.  The hair pulling left me with little to no eyebrows, and an embarrassing bald spot on the back of my head that covered nicely with a military style bun.  Without babbling on as I am wont to do, it was another thing I had to work through with a mental health professional (and one awesome esthetician).  The skin picking is still a challenge, and as stress in my life heightens so does that.  This is the most embarrassing of my anxiety issues because this leaves the most obvious marks on my face.  My arms I can hide with long sleeves.  Even though I am incredibly aware of the marking and scarring left, most people don’t notice it, unless they are very close to me, and even then most don’t unless I am comfortable enough around them that they have actually seen me doing said picking.

So, I believe we can see why the usage of OCD is ableist here: it isn’t some funny quirk.  You are trying to be witty.  I get that.  But your witty words mean things about my life, parts of my life that I have worked to overcome, and which people I know are still living with daily and that just isn’t funny.  It isn’t something we close up in a cupboard and laugh about with friends*.  It is a daily struggle for people who absolutely know that they are doing things that are unreasonable to help them cope with the anxiety of things that they also know are unreasonable.  We slog through it, grind it down over years, beat it back, and work our asses off to gain chunks and pieces of our lives back from it.  That is no joke to us.  It is extremely ableist for a person who is in control of their thoughts and actions to appropriate this term to mean that someone is really particular about the way they like things.

So, no, your very tidy friend is not OC.  Unless sie is.  And then, ha ha, sie probably doesn’t appreciate having hir life poked at.

*OK, you got me.  Sometimes we do.  But that is our right, not yours.

Calendar Girls: Sexification Strikes Yet Another Serious Health Condition

[Author’s note: I’d been meaning to submit this piece somewhere since earlier this year, but never got around to it. I know we’re almost finished with 2009–so focusing on a charity calendar may seem a bit old meme, at least in internet time–but some of the issues that this campaign raises are, as they say, timeless.]

When the words “chronic pain condition” come to mind, not many people can name a charitable project that is trying to raise awareness while also dovetailing nicely with current mainstream standards of beauty. British former model Bianca Embley has set out to change this, at least in the UK. After a work-related accident that resulted in a diagnosis of severe fibromyalgia, Embley was left unable to work. According to her website, Embley “aim[s] to raise awareness of Fibromyalgia, specifically in the press and media, but also by supporting awareness campaigns through UK Fibromyalgia charities and organizations” with the rather risqué Polka Dot Gals 2009 Calendar [NSFW]—a 12-month compendium of artistic nude and nearly-nude portraits of female models, including one who, the website crows, has posed for such illustrious publications as Maxim and Playboy. All of the photographs make use of the organization’s official colors (black polka dots on a yellow background) in various creative ways. The calendar and its photos have garnered a fair amount of press coverage in Great Britain, in addition to quite a few celebrity endorsements. While this project’s goal is certainly one that means well, the project also brings questions of conventional female beauty, its marketability, and intended audience to the fore.

The Polka Dot Gals project seems to have an almost-exclusive focus on a very specific type of beauty that’s almost a Feminism 101 cliché: the young, white, thin, fully made-up and free of body hair paragon of femininity that is so overexposed in modern consumer culture, advertising and—dare I say it—pornography. As many a feminist activist has warned us, this type of “beauty” sells; at the same time, it is this sort of representation of female beauty that feminists have decried since the 1970s.

However, what makes this criticism more complicated is that Embley herself posed for the calendar, and though she may appear able-bodied in these images, she is not. The photographs that feature Embley have her posed [link goes to an article that appeared in The Sun; NSFW] in ways that suggest that she is able-bodied, at least in part; in one shot, she stands fully nude, her back to the camera, as she clutches a martini glass in one hand and her cane in the other. Taken out of context, this pose does not seem to allude to her condition in an obvious way—and the photograph, in fact, looks strikingly similar to many soft-core images that have come before it. The message seems to be twofold: 1) Women with chronic illnesses can still be sexy, albeit in ways that are approved and encouraged by the culturally sanctioned gold standard of sexualized, “feminine” display; and 2) This sexiness can be channeled into photographs for public display and consumption, so long as the goal is to “raise awareness” of chronic illness and disability.

A few of the poses struck by these ostensibly well-meaning calendar girls don’t seem to have much to do with the condition, or with disability, at all: former Playboy model Danni Wells, in her photo, wears both a coquettish smirk and a yellow and black polka-dot ribbon that (just barely) covers her naked body. Were it not connected with Embley’s campaign, the image could plausibly be a banner ad for a porn website. Wells’s personal stake in the campaign stems from the fact that her grandmother lives with fibromyalgia. (One might wonder how Wells’s grandmother feels about her granddaughter’s participation in the project, especially given the nature of the images that make up the calendar.)

Such images bring to mind the question of intended audience; according to the website, a “portion of the profits” will go toward raising awareness of the condition in the UK, which begs the question of who, exactly, might purchase this calendar. The fact that the calendar is full of photographs that, by and large, seem designed to appeal to a heterosexual and possibly able-bodied male audience, is obviously problematic in a feminist sense. Given that fibromyalgia is a very gender-skewed condition (the ratio of females to males with the condition—at least within the US—is nearly 10 to 1), it appears that projects which aim to raise awareness of the condition in new and interesting ways have been a long time coming. The goals of the Polka Dot Gals are admirable, and the calendar may bring some much-needed attention to a condition that lacks a public face, but the project’s uncritical reproduction of the white, attractive and (seemingly) able-bodied female body as body-on-permanent-display—no matter if the body in question is wrought with constant pain and fatigue—is still troubling.

BADD: The radical notion that people with disabilities are people, and Australia’s 2020 Summit

[This post was originally written for BADD – Blogging Against Disablism Day, and posted on May 1, 2008 at Hoyden About Town. The 2020 Summit was an attempt by the then-new Rudd government to brainstorm ideas for the country’s direction in areas including the economy, health, social inclusion, sustainability, the arts, and so on.]

badd02

This post is a part of Blogging Against Disablism Day.

For most people, health is not life’s goal. Public health is not a religion, or, as recently seen in the United States of America, health is a journey, not a destination. Health is a means to an end, it is a resource for living the full life, not something to be pursued in an obsessive way that denies risk enjoyment and testing limits.

[John R Ashton and Lowell Levin, “Beware of Healthism”]

How many people with disabilities participated in Australia’s 2020 Summit?

According to the Australian Bureau of Statistics, 19% of the young (aged 5-64) population have disabilities, and numbers are much higher after retirement age. If people with disabilities (PWD) are considered full citizens and had proportional representation at the Summit, of 1000 working-age participants, you might expect nearly two hundred people with disabilities having their say at the Summit.

Of people with disclosed or visible disabilities, however, the current count seems to stand at less than ten. According to one source, there were six. The fact that these numbers are difficult to obtain shows how important this issue is in the able-bodied national psyche.

On this information, that’s PWD underrepresented by a factor of thirty. How many protests would there be if there had been only 16 women at the Summit? The country scrutinised gender inclusion closely and at length, both in the mainstream media and in the blogosphere. This disablist inequality puts that to shame.

You can download the Initial Report of the Australia 2020 Summit here.

The report opens with “The Productivity Agenda”. The focus on a competition economy labels us as marginal citizens, if we are not economically useful. We are primarily a problem for capitalism, a burden to be reluctantly dealt with. We are not seen as people with thoughts and ideas and lives, people who have their own perspectives and contributions to Australia’s civic society and cultural life.

Continue reading BADD: The radical notion that people with disabilities are people, and Australia’s 2020 Summit

Second Shift for the Sick

(Originally posted November 2008 at three rivers fog.)

I had always meant to expand upon this topic, but never found the right words for it, succinct and meaningful. But, well, that’s not exactly my style either.

My job situation is still shitty, and I’m currently part-timing at a retail pharmacy as a cashier. (Sample day: Mid-20s white guy “discretely” [read:blatantly] takes a picture of me on his cell phone as I am kneeling down assembling a battery display; someone shits in the toilet paper aisle [seriously! a person! took the time to unbutton their pants and all!]; I set alarm off while fetching pushcart from back room.) “The injustices of retail,” I said to my coworker, as I nursed the scratch on my finger from pushing that toothpick in a little too hard.

But honestly, I still do, and always have, appreciated working with the public. It’s the kind of thing that reeks a little too much of bullshit to say in an interview (“Really! I love when people show visible surprise at the revelation that I can do third-grade math!”) but, well, it’s true. I like people. I am, fundamentally, the kind of person who likes spending time with people (though my severe social anxiety always masked it). I’m not a butterfly by any means — good God, I can’t stand parties, pubs, or the mall at Christmastime, and I always need time to recharge after any extended social time — but I do enjoy interacting with a variety of different people, and there are days I go home smiling because of it.

Today I met a man named Robert. He stopped by to ask how long a sale price on a can of Folgers was supposed to last, and we ended up chatting for a good ten or fifteen minutes — the line piled up behind me, but I didn’t give a damn. Robert was in a wheelchair, for whatever reason, and was there to pick up his medication, whatever it was. He got his “paycheck” on the third of every month, and only the third (read “paycheck,” there, as Social Security disability check) but right now he was fighting with Verizon, who apparently shorted him half a hundred dollars worth of minutes on his phone, and he was going back-and-forth with them to get the situation righted, and anyway he wouldn’t be able to come back for his coffee til then. I was nodding and exclaiming the whole time as he was describing how much fighting he had to do — to get his transportation to the doctor, to work, to the grocery store; to get his medicine filled correctly and on time; to keep his welfare benefits flowing smoothly (there is apparently a very common mistake that gets made on his account every couple months, and he then has to make a dozen calls here and there to get things patched up, and then a few weeks later some new worker makes the same mistake again, and…) etc. etc. etc.

God did I identify, and I didn’t have to deal with the half of what he did. The fatigue and the worry and the energy and the stress and the wasted time — and when I related as much to him (having by this point unfolded my stool and sat down over the counter) he laughed it off — “Oh hell, I’m used to it by now — doesn’t bother me.”

I hope I never get to that point. No one should ever have to get to that fucking point. No one should ever have to spend half their waking hours, no fucking exaggeration, correcting other people’s mistakes just to keep the basic necessities of life covered — and then getting attitude from those same people for being a pain in the ass to deal with.

This is a serious time sink for the ill and disabled. It is time that could be spend — you know, maybe working? bootstraps and all — could be spent writing, could be spent playing board games, or taking a bath, or spending time with loved ones, or going out to eat — or any number of other things that are totally productive, constructive, positive things to do — which, to varying effect, do make contribution to wider society.

And it’s a lot of time. This is why I call it the second shift: much like the second shift of professional women, who arrive home from work to do the domestic work their husbands do not do: this is a disproportionately larger share of time spent fighting, always fighting, pushing determinedly (or tiredly) through near-constant resistance.

Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.

That is privilege. The ability to swim through your sea with nary a care, completely obliviously unaware of the freedom of movement you are so fortunate to have, while the rest of us have sand bags tied to our limbs, anchors roped round our waists, our feet set in cement blocks… and to look back at us and ask, “What’s taking you so long?”

It’s exhausting. I cannot convey in words how exhausting the fight is. Always on the defensive, always saddled with the knowledge that your basic needs require a struggle, while everyone else’s basic needs are pretty much a given so long as they put in at least a half-assed drop of effort. It’s not even just time spent, it’s energy.

Look at it this way. How do you build muscle? You subject your muscles to resistance, just enough to create thousands of tiny little tears in your tissue, which your body then, with rest and nutrition, repairs — which leaves you stronger.

But this does not mean that all resistance therefore makes you stronger. Because the more you pile on, the more tiny little tears you make. And the less time you have to rest, to eat and drink well, to tend to your bodily health, the less of those tiny little tears get repaired. And you find yourself, now, with millions of tiny little tears, and not enough time or fortitude to repair even only the thousands you had before this overload.

Which means you don’t get stronger. You get weaker.

“What doesn’t kill you makes you stronger.” What unadulterated bullshit. And it has the bonus effect of implying that those who do not feel stronger after a difficult incident, those who feel fatigued and despondent, those who see themselves as in a worse place than they were when they started — it implies that those people are choosing their fate. It implies that those people get something out of their misery.

Say, all you sick people out there: does any of this sound familiar?

Robert and I wrapped up our chat — turns out he lived in Anaheim for awhile, and also attended Cal State Fullerton; what a small world! — and I moved on to the next customer, affecting the smile and the sing-song customer service voice. Hi! Do you have your [Pharmacy Name] card with you today?

But it was nice, if only for a moment, to connect with someone. To, prompted by the unspoken invitation of a new friend, reach down into myself, and connect with the real person deep inside.

Maybe our struggles make us stronger; maybe they make us weaker. It doesn’t matter. We work with the tools we are given, and we still make something whole and beautiful, something worthy, something satisfying. Why do we have to come out of every fight bigger and “better”? Why can’t we be broken and hurt? Why can’t we cry, why can’t we curse, why can’t we be angry and disappointed and let down sometimes?

Right — because we wouldn’t want to make the rest of you face up to the damage you do to our lives. We wouldn’t want to “burden” you, wouldn’t want you to have to do anything to maybe reduce a little bit the fighting we have to do to live our lives. We wouldn’t want to make you have to think about how your actions and attitudes affect other people — wouldn’t want to make you uncomfortable.

When we are allowed to be angry, to be sad, to be bitter and disappointed, we are allowed to be human. When we are denied these emotions, we are denied our humanity. We are denied the full range of human experience.

It is fundamentally unfair — to weigh a person down disproportionately — to pile more and more shit atop their back — and then to grow indignant when that person lets out a sigh under the pressure — much less looks straight at you and lets rest the responsibility where it belongs. But this is how we treat each other — immigrants, queer folk, the disabled, those of color, the poor and disadvantaged — because we are fundamentally uncomfortable owning up to our own power.

Life would be so much better if we realized how much power we all have over each other — and how much power everyone else has over us — our interdependency. It is the concept out of which disability grows. And life would be so much better if we could look at this fact and see, not

scary,

or

unknown,

but

opportunity.

Rant: Your Logic is SO Faulty!

You have no grasp of logic! Your argument is invalid! – this is what I started yelling at my computer when I came across this story in my Google Reader:

Should parents be worried? A new parent survey indicates that the number of American children with autism has doubled since 2003, to 1 in 91. The National Survey of Children’s Health, which is largely based on unconfirmed information from parents on the health of 78,000 kids, is less official than the U.S. government study of six years ago, causing a debate over how many children actually suffer from autism. If the current figures are accurate, 1.1 percent of children have some kind of autistic disorder compared to 0.57 in 2003. Regardless of the exact numbers, researchers are concerned: “The study shows that the increase in autism is real—you can’t have a genetic epidemic—there are environmental factors in play,” said Rebecca Estepp, national media manager for Talk About Curing Autism (TACA). “This is a national health crisis. … I don’t know how it hasn’t been declared a national health emergency.” (beast)

First of all, lady, the name of your organization is offensive. (Also.)

Second of all, your assumption that the sole variable causing the increase in rate of autism diagnoses is an increase in the occurrence of autism is literally laughable – even more so when the number on which you’re relying on self reporting by parents. But it (rightly) doesn’t count as a diagnosis every time I self-diagnose something with the help of Dr. Web, MD. The self reporting wasn’t confirmed with medical records, not that records would resolve the issue. Pinning down prevalence rates of autism is an impossible task and the variable rates are within the huge margin of error for this difficult measurement.

And then, there’s the whole issue of variance of diagnosis based on race and/or class issues (especially this study demonstrating that prevalence rates vary primarily by income, based on access to care), including the historic tendency to place minority kids in special education as a disciplinary measure.

So basically, SHUT UP.

(very slightly modified from original posting at think on this.)

Who hates to hear they look great?

(Originally posted July 2007 at three rivers fog)

Over half of the chronically ill*:

In a recent survey of 611 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 53.27% of the respondents said that the most frustrating or annoying comment people make about their illness is “But you look so good!”

“Although telling someone they look good is often seen as a compliment,” says Lisa Copen, founder of National Invisible Chronic Illness Awareness Week “it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”

Absolutely.

This is a sore spot for many with “invisible” conditions: that is, disabilities or impairments that aren’t visible to the eye, that don’t cause outward physical deformities or leave other telltale signs. The icon of the disabled in our society is a stick figure in a wheelchair; many healthy folks don’t realize that a good many of the people milling around them, though appearing outwardly healthy, can be suffering a chronic illness that leaves them impaired or outright disabled.

These illnesses can range from diabetes to chronic fatigue syndrome to cancer to eating disorders.

And because they are invisible, they can be harder to understand. People can’t see what’s wrong with you, so they assume there isn’t anything wrong (and we’re back to that white male able-bodied heterosexual default “person” again). Even presented with evidence, many people still insist that there can’t be anything really wrong. As people who have battled depression surely find familiar, you’re expected to just get out and get some sun, go out with friends, or otherwise push through. Most of us, after all, have experienced periods of sadness, pain or fatigue, or times when we were excessively hard on ourselves over our physical appearance—and healthy people will be able to recover from these things and move on. They have little concept of living with these things every minute of every day for the rest of your life.

And of course, no one can be expected to fully understand. But there are certainly conversational landmines that even the most well-meaning and sympathetic person can inadvertently step on. “You look great!” is one of them. Naturally, everyone loves a compliment (although many, especially women, are trained to feel a need to debate or deny those comments so as not to seem unduly self-confident). But when these compliments are offered as a refutation to a person’s complaints that they are feeling down or tired or overwhelmed, it leaves a person feeling (recall that teenage angst) that they aren’t really understood.

I’ll grant that I don’t tend to mind these comments as much; they blow over me a bit more easily. But a couple more comments that the committee picked out tend to dig under my skin:

* “If you stopped thinking about it and went back to work…” (12.42%)

ARGH!

I’ve been told to “think positive” my way out of the pain countless times. I have news for these people. I thought-positived my way through my entire first nineteen years of life. Despite living with a pain processing disorder that can make carrying in a few grocery bags feel like running a marathon, I pushed my way through school on nothing but Tylenol. And then I very nearly failed out of high school because I overworked myself. I was out of school for so long that the attendance office started calling and leaving threatening messages that I needed to come back or… I would go back to school for half a day and then take off my three-days-without-a-doctor’s-note just recovering from those three and a half hours sitting in a chair, not even enough mental energy left to learn: just enough to be present.

I then pushed myself through college, thinking that if I could just keep at it I could be “normal.” After six weeks I had to drop all my classes; I was stuck in bed in too much pain to so much as microwave myself a Hot Pocket for lunch; I lived on a big pan of bread bedside until I was able to go back home. I was bedridden and then housebound for three months thereafter.

I learned to pace myself after that; I dropped down to twelve units when I was able to return to college, and then mid-semester had to drop half those just to be able to finish half my work in the remaining half. (One prof cut me slack and gave me an A based on the work that I did, the other didn’t and gave me a C- because though I did good work, I didn’t do enough work to earn the grade. I still can’t decide which approach affords me more dignity.) Then I dropped down to six units the next semester and wasn’t able to finish it out. The pain catches up to me.

Then, a year later, I started working. Ten hours a week. And after six months I had to quit. It was killing me. I couldn’t walk when I woke in the morning; it felt like daggers shooting through the floor into my feet with the slightest of weight. I was feeling the migraines coming back, and my painkiller use was shooting upward at a rate I was decidedly not comfortable with. And my bosses were jerks to boot (“I’m fifty years old, honey, I hurt too.” “…!!!! [splutter]”).

No. I can’t be normal. Even if I look like any other perfectly healthy twenty-one-year-old (albeit with somewhat darker circles under her somewhat baggier eyes). I have to pace myself. I can’t take any more than two showers a week (and showers-per-week is a good gauge of my health at the time; when it drops below one, I know I’m in trouble). I can’t get out of the house too much (the effort trying to make myself look half-presentable, even after I ditched the somewhat exacting patriarchy standards, is too much, and then I’m out of my comfort zone where I can sit, stand, lie how I need, when I need and where I need, have my medicine and a drink at hand and heating pads and pillows ever-ready). I can’t take on too many out-of-house commitments, if any, and it has to be a pretty flexible definition of “commitment” to boot. My husband works full time and I not at all, and he still does half the housework. I’ve learned to ask for help when I’m struggling instead of stubbornly insisting I can do it myself. Etc. I’ve had to accept all these things. It’s a heavy hit to your pride, trust me.

Which reminds me of the last one that bugs the shit out of me:

3. You’re so lucky to get to stay in bed all day.

Oh, honey. I’d give anything to trade you…

*(A side note: I find it frustrating that a good chunk of stories I receive on fibromyalgia are press releases, seeking to advertise a new “alternative” treatment or, in some other way, make money off those suffering. A good chunk of the rest is business stories talking about how a condition impacts corporate profits. The remainder are slice-of-life stories that often get the facts pathetically wrong. I’d say perhaps one out of every thirty or forty stories that come my way seem to approach the condition in a respectful and accurate tone. This, despite being a press release, was one of them.)