Tag Archives: fibromyalgia

Depending on narcotics

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IMG_0172I take six medications. Five of them — the antiepileptic, the antidepressant, the non-narcotic pain killer, the muscle relaxer, and the oral contraceptive — are covered through a mail-order service. I receive a 90-day supply in my mail box every three months. No hassle. If a prescription runs out, my doctor is notified electronically, he then sends the new script electronically, and everything proceeds as normal with absolutely no additional step required of me. The only thing I do is click on the check-out button on the web site every three months. That’s it. No calling. No physical piece of paper to pick up. No wait at a retail pharmacy. Just a click and several days’ wait.

There’s one other medication I take. That medication serves the exact same purpose as all five others: it relieves my pain so that I can get on with my daily functions. I take it regularly, just like all five others. I have been taking it regularly for over five years now for the same reason. But this medication is not covered by the mail order service, because it is not considered a “maintenance medication” — despite that it fills the exact same maintenance role all five others fill, just by a different mechanism.

So for this medication, I am only allowed a 30-day supply at a time, and no refills — a brand new script each fill, which requires my doctor’s input each time. I have to call my doctor no sooner than the exact day it was filled last month, unless it falls on a weekend in which case I might get away with calling up to 2 days early. Then I have to call back a couple days later to see if the script has been written. If it has, it is printed out, and I have to physically walk in to the office, stand in line to see a receptionist, have them take a copy of the script with my photo ID, sign and date the copy, and walk out with the script. Then I have to physically take it into a retail pharmacy, wait in line, hand it to the pharmacy technician, then wait the required time for it to be filled. If there are no problems with my insurance, I then must physically present myself and pay for the prescription. Then I can walk out the door with my medication.

(And this is the process with a doctor who’s relatively friendly about the matter.)

It is quite a different process and one overflowing with “veto points” — points at which any party involved can cause any sort of problem and stop the whole process up. Maybe my doctor is on vacation and won’t be back for two weeks. He is the only one in my clinic who will write this script. I can’t call earlier in anticipation of his absence; they will not write the script before the last runs out. In that case, I’m stuck until he comes back. Maybe the system spits out some sort of error, like the one I received today: I was told the script must be written by my original prescriber. Which is this doctor. So now they have to go back and ask for the script all over again, and he isn’t in til tomorrow, and it’s not guaranteed to go through smoothly then. There have been other errors.

Maybe the insurance says no. For any number of reasons; I’ve dealt with prior authorization errors, quantity limit errors, errors because my insurance has suddenly decided to list me as living in an assisted-living home and cannot fill a prescription if I am. Maybe the pharmacy hits a snag, like the time they would not fill a written prescription until 2 a.m. that night because the insurance company said so, even if we paid out of pocket without billing the insurance.

And I’m going to keep running into these issues, and I will run into new errors every few months. I may have solved the last problem, but there’s always something new to pop up. I can never rely on this medication being filled on-time. It simply does not happen the majority of the time. No matter how diligent I am, how patient I am, how clearly and politely I explain myself — or how despondent I get, how emotional I get when telling them but I cannot work without this medication, and I don’t have leave on this job, and I can’t afford to be fired for missing work. Or whatever other pickle I’m in at the moment. It doesn’t matter. I do everything right and there will still be regular problems in getting my medication filled on time.

I’m sure, by now, you’ve figured out that this particular medication is a narcotic pain killer — hydrocodone (generic for Vicodin). I take it for chronic pain. I have been taking it for over five years this way, with the doses varying between one-and-a-half per day and three per day. And the only medical trouble I have ever had on it is when there was an excessive delay in refill during a bad pain flare and I got to go through the withdrawal for two weeks. (And I can tell you from experience: hydrocodone withdrawal is nothing compared to Effexor withdrawal.)

Narcotic pain killers can be a valid option for chronic pain patients. They fill a void left by other treatments which still aren’t effective enough to address our symptoms, which can easily be disabling. As you can see, I take plenty of other medications. But if I want to be able to get up and do something, I still need the pain relief the hydrocodone provides. So I take it. Because I like to be able to get up and do things. Like make the bed in the morning and feed the cats and make myself lunch and possibly run errands. Or — you know — work. Those silly sorts of things.

Here’s the thing, though. In both common culture and the medical industry, chronic pain patients who take these medications to be able to perform everyday, ordinary tasks that currently-able people take for granted — like bathing or showering or washing dishes or dropping their kids off at school — are still constructed as an addict just looking to get high.

You could almost kind of expect that for the narcotics. Most people do not understand the distinction between addiction and dependence. (Which is, basically, the distinction between taking a medication for a medical purpose so that you can go on living your everyday life, vs. taking a medication when you have no medical need so that you can escape from your everyday life.) This distinction exists for a reason; developing a tolerance for a medication is not a bad thing in and of itself, and must be weighed against the benefits that medications brings to the person.

Addiction calls to mind, though, a life being torn down. Addiction calls to mind a person who is seeing the detriment of a drug outweighing the benefit. A person whose life is falling apart because of the drug.

A chronic pain patient taking a narcotic pain killer under the close supervision and guidance of a knowledgeable doctor is exactly the opposite: sie is a person whose life is coming back together because of the drug.

But this image is not easily shaken in people’s minds. And so the chronic pain patient is reimagined as the addict. Hir behaviors are twisted to fit the common conception of the addict. If sie ever lets out a drop of disappointment at having problems with accessing this medication which is helping to put hir life back together — that is seen as drug-seeking behavior. And if sie lets out any sort of relief at the feeling sie experiences after taking the pill and having the crushing weight lifted from hir muscles — that is seen as “getting a high.” Heaven forbid sie show any emotion beyond just relief — like perhaps pleasure or happiness — at being able to perform everyday functions again. And any moodiness or other undesirable behavior can be easily attributed to hir “addiction.”

What’s strange, I notice, is that this reimagining is applied not only to chronic pain patients who take narcotics — but to any chronic pain patients who takes any pain relieving drug.

Take, for example, the anti-epileptic I take. It is not a narcotic. It cannot be abused — that is, if you do not have a neurological pain disorder, it will not do anything for you. You can’t use it to get high, get low, or get anything — except a couple hundred dollars poorer every month.

The only way this pill does anything for you is if you have some sort of nerve problem. And even then, the effect isn’t a “high.” Rather, it levels your pain threshhold — brings it closer to “normal.” No artificial mood effects, no giddiness, no lift. Just level.

And I still see this medication treated very similarly. Patients who take it are described in the same terms you would describe a drug addict.

And it’s just one of many. Any drug that relieves pain for a person with chronic pain will be painted in the same strokes.

At issue, here, is the conventional wisdom that our pain is imagined, that it has no real basis, or even then that it isn’t as bad as we make it out to be. That is the belief that feeds this twisted construction.

Because if you are imagining your pain, there is nothing legitimate you could be getting out of that drug. And if you aren’t getting anything legitimate out of it, but you’re still taking it — and getting upset when you don’t have it — well, that’s classic addict behavior, isn’t it?

If our pain were recognized as real and legitimate — if those messed-up-in-so-many-ways Lyrica commercials didn’t start out with “My fibromyalgia pain is real!” — this wouldn’t happen as much. Because if our pain is real and legitimate, then it is real and legitimate to seek relief for it.

(Of course, that assumes that pharmaceuticals are accepted as a real and legitimate way to relieve that pain.)

But people are going to have trouble with that. They don’t want to accept our pain. They don’t want to admit that it is real. They want to keep believing that it must be imagined. Because then, they can comfort themselves, in that murky area beneath our conscious thought, that they would never end up in our situation. They could never end up with any sort of medical condition. And if they did, well, they know how to do everything right, so they would never be affected by it.

This is why they scoff at our assertions that our experiences are real. This is why our conditions are jokes to a great many people. This is why “fibromyalgia is bullshit” has been the leading search term to my blog. This is why they seek so desperately to deny that these drugs — any drug — could be having a legitimate effect on us. This is why they treat us like addicts. Because they can see how we might reasonably be having real pain, and they can see how these drugs might reasonably be legitimately relieving it, and they can see how we might reasonably be upset if we are consistently denied access to the one thing that allows us to live our lives the way we want to.

And if all that is reasonable, then — shit — they could wind up in the same place someday. And none of their can-do bootstrap individual determination could magically get them out of it.

Addicts we are, then.

Yes, it DOES make a difference

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(Cross-posted at three rivers fog.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.

CFS/ME and “faulty illness beliefs”: The incredible hubris of the psychiatro-patriarchal complex

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This post was originally posted on March 19, 2009 at Hoyden About Town.

New Scientist this week published an interview with infamous psychiatrist Simon Wessely. Wessely persists in believing, in the face of all the evidence, that Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME)* is a uniquely UK/American psychological condition caused by internet-triggered “faulty illness beliefs”.

Here’s a bit. Read the rest at the link.

Mind over body?

Can people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome has led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it’s like to be disliked by people you’re trying to help.

How might most of us experience the effects of the mind on the body?

In an average week you probably experience numerous examples of how what’s going on around you affects your subjective health. Most people instinctively know that when bad things happen, they affect your body. You can’t sleep, you feel anxious, you’ve got butterflies in your stomach… you feel awful.

When does that turn into an illness?

Such symptoms only become a problem when people get trapped in excessively narrow explanations for illness – when they exclude any broader consideration of the many reasons why we feel the way we do. This is where the internet can do real harm. And sometimes people fall into the hands of charlatans who give them bogus explanations. […]

Continue reading CFS/ME and “faulty illness beliefs”: The incredible hubris of the psychiatro-patriarchal complex →

“What can I do?”

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Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

So let’s be clear — YOU ARE PART OF THE PROBLEM. And there is no instant solution, no magic words that can make that “go away.”

But what can you do?

I thought of what I think is an illustrative example the other day.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.

Calendar Girls: Sexification Strikes Yet Another Serious Health Condition

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[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.

Pain and Public Spaces

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The singer Martha Wainwright has a song entitled “Bleeding All Over You” that begins with the following set of lyrics:

There are days
when the cage doesn’t
seem to open very wide at all

I know it sounds negative, but some days, I can definitely relate. Maybe it’s the fact that I pass fairly regularly as able-bodied–at least in public spaces–or maybe it’s my failure at passing on my worst days that makes me relate. As much as I hate to rely upon the old trope of the person-with-disability as trapped by her own unruly body, it, like many tropes, has a sliver of truth to it.

When I am in public, I often fear that other people–more able-bodied people–can “spot” my disability. On a purely surface level, this makes no sense. Part of what makes passing such an interesting topic is the fact that, on some level, the individual who passes can hide something and look as if she or he is a part of another group, despite some (invisible) evidence that would suggest otherwise. I realize also that not everyone has the ability to pass–that passing, in itself, is a privilege. The ability to appear to be something that one is not (often as a member of a more privileged group) is not something that absolutely everyone has.

Today, I sat in a restaurant and ate a light lunch very, very slowly because my right hand was unable to hold the fork without considerable muscle pain in my tendons and wrist. This sort of thing happens rarely, but when it does, I get nervous. I become nervous because I think that my fellow diners, or students, or whomever, can pick up on my not-immediately-obvious physical difference(s) from something that is only slightly “off.” Even using a term like “off” is problematic; it implies that there is something wrong, that the person who needs to take time to do some of the things that others may take for granted needs to be fixed, somehow; that, or she needs to “fix” herself (by minimizing/masking her pain or ability or dis-ability) so that she may fit in and continue to pass.

So, are my restrained grimaces due to pain–when I am in public spaces, that is– restrained because I, deep down, want to continue passing? Is it because I would be embarrassed to show my pain around strangers? Is it out of rather ridiculous consideration(s) of the “comfort” level of strangers (ie: the social assumption that one should never make people uncomfortable, even if one is in pain)? Does a “stiff upper lip,” so to speak, actually do anyone a favor? I’d argue that the whole “keep your pain to yourself” thing might arise from a very deep fear of individuals with disabilities, but that’s probably best saved for another post.

Originally posted at Ham.Blog

Who hates to hear they look great?

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(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.)