I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom.

***

The office I work at is lit by fluorescent lamps, which can trigger migraines for me, but the light level was reasonable enough that it wasn’t a problem up until that point. Last time the maintenance guy came through to replace the select few old-and-broken lights, I asked him to twist the bulbs above my desk so that they would dim or turn off, and he did so, and I was extremely happy. The lights were ok when they were on, but the new lights were already making my head hurt just having been replaced a couple dozen feet away. Now, my desk was a safe and comfortable space and I could work without that particular disruption.

Around Christmas, the safety coordinator in my office — who seems to dislike me, demonstrated well before this incident, and repeatedly since — took up a new pet project: replacing the lights. The safety coordinator decided that every single tube in the office needed to be replaced with brand new tubes at double the former intensity. And not only that: previously there had been two tubes per light; now, she wanted to fill all four tubes, in every single light, with that brand new double-intensity fluorescent lamp.

I arrived at work the day after the lights were put in, and I lasted five minutes at my desk before I had to stumble away. I was having an asthma attack (and I cannot use inhalers); my stomach was churning violently; my eyes were throbbing, and I actually lost vision altogether for a couple minutes — and my field of vision was covered in multi-colored spots for hours afterward, and my eyes were blurry and out of focus — I could not make my eyes focus, anywhere, not to read the screen in front of me or the clock on the opposite wall.

Five minutes. The time it took to boot my computer and email my supply person asking if my lights could be changed.

The answer was no, which marked the start of a months-long ordeal with Human Resources (which consists of three people, one of whom is the safety coordinator whose pet project this was in the first place). They told me that if I wanted it resolved quickly I shouldn’t file an ADA accommodation request, and then stonewalled me and eventually told me the only way to resolve it was to file an ADA. They told me it would be useless to make any change because “what if she moves somewhere else” (um, I work a specific program, do not have the job title to work anything else, and this program has never been anywhere other than this area of the building). Eventually I found out that at the safety meeting that preceded this decision, my supply person (who is an assistant back in the administration/HR area) raised her hand and specifically said, “Amanda would prefer to have her lights turned off, because it aggravates her migraines” — remembering when I had requested this of the maintenance man — and one of the union stewards, who knows I am disabled with a chronic pain condition, replied, “No, we can’t do that, we have to treat everybody exactly the same. No one can be treated differently.”

I had taken the initiative to move myself to the one desk where the lights were burning out almost immediately — checking messages on my phone every ten minutes and continuing to do the same work I had done before. On the day I left for two hours for a doctor’s appointment, HR chose that time to hold a meeting with my supervisor to relay the order that I return to my normal desk, as it was, no change to the lighting situation — and I was advised that refusing a direct order was a fireable offense.

I was “allowed” to wear sunglasses in the office, which merely delayed the onset of my migraine by a couple hours (primarily the eye strain from trying to read and operate a computer screen with sunglasses on, secondarily the light itself); I was leaving work early more often than not. The safety coordinator at one point came over to sit down at my desk and ask me — gesturing with her hands held over her brow, parallel to the ground — “Can’t you wear one of those — what are they called? –” Sigh. “Visors?” “Yes, that!” No, it wouldn’t, because the light was glaring off my desk, the windows, the file cabinets, the walls — blocking one direction of light in that situation would be like trying to take a shower with an eyedropper. She was unsatisfied with this answer and walked away. (Of course, if I had tried to use “one of those” before she came up with that bright idea, she probably would have called another meeting to order me to stop violating the dress code.)

My specific accommodation request — to simply twist the bulbs so that the lights above my desk were off — was eventually denied because nonharmful lighting would be a danger to the workers around me (all five of them hated those lights and had complained to HR about them as well!) — the difference between the old and new lights was like the difference between a sunny summer’s day and the surface of the sun; it’s already very brightly lit. They decided to order a cheap full-spectrum filter — and tsk to me that they would have to see if it was in their budget — that specifically advertised that it only reduced the light’s brightness by some trivial amount. I protested to them repeatedly that it was the brightness that was the problem, not the color of the light, but they would not allow any change to the brightness. Safety concern. Turned out I was still getting migraines, so they gave in to my tired request to order the gradient sleeve filters that were listed immediately under the original filters they had bought. And that worked. By… reducing the lights much as if they had been twisted off. As I requested in the first place. Which would have cost precisely nothing.

Well, it’s worked well enough since then. And since, ahem, the ballast was broken on a couple sides trying to install four sleeves on two sets — the lights are connected such that if one light goes out, its companion on the opposite side does too. So that took care of four lights for me. Of the four remaining, the gradient sleeve is turned to provide an amount of light I am happy with. And all is well.

At least, it remains well when my desk is of any use to me. But when my motherboard blows a couple capacitors and my computer is out for the count during one of the busiest weeks in our program, and I’m already marked as a Troublemaker by HR and thus do not want to go around swapping computers by myself, all of a sudden I’m right back in the same situation I started. Now a few of the new bulbs have dimmed with time, but it’s all shaking my stable footing in terms of pain.

My coworker offers me her desk, because she is spending most of her time upstairs. It is the desk next to mine, across the aisle. The desk in the corner of the building, with twice as many windows, and fluorescent lights that have not dimmed a bit, remaining significantly brighter than any in this quarter of the building.

I take it for the first afternoon, when my computer has just died, because it’s the only space available. And I pay for it. Because I’m seeing spots again by the end of the workday. My stomach is doing acrobatics and I’m afraid I’m going to vomit all night. It’s hard to breath, hard to think, hard to focus my eyes. Sensory overload, feel like I’m going to explode.

This was early in the week. I spend the next couple days parked at someone else’s desk, until that person comes back to work and I am deskless again. My coworker offers me her desk again, and I decline, saying “I can’t sit there because of the lights.” Oh, okay, she says.

Until the next day, Friday, the busiest day, when I am rushing around coordinating things for a dozen different people and being yelled at by clients all the way — using the maddeningly slow and unresponsive computer connected to the printer/scanner/fax equipment in the station next to my home desk. Seeing my frustration with this instability, my coworker again offers her desk. And again I decline. And this time, she throws in: “Well, if you change your mind, you can have it!” In her sweet, quiet voice, and she heads upstairs again.

Because this pain is really ultimately a personal decision.

This is the person who, sitting at that station computer scanning, asked me sweetly if I could turn my desk fan so it would cover her too (the building’s climate is very poorly controlled) — and I agree, because the air will still hit me and it is, seriously, really hot in here — but finishes her request with a laugh, “since I can’t have any light here.”

Sweet and quiet.

Sometimes, the people who are going to hurt you are easy to identify. Like my safety coordinator, who has tattled over the most trivial and frankly inaccurate things to my supervisor (who knows she is full of shit).

Sometimes, they aren’t.

***

I can never trust anyone to understand.

This knowledge always hangs in the back of my mind. It is disturbing, in the sense of creating unrest, destroying stability.

On the other hand, truly accepting it could free me — no more time spend artificially dividing people into categories of “Volatile, Will Probably Hurt Me” (focus all energies on protecting self from these!) and “Safe, Would Not Hurt Me” (so tired from the first category, no energy to protect self on any measure around them) — now I can spend that time and energy centering myself and my needs, thinking about what I really need to protect (from anybody), what I’m ok with people knowing — and even focusing that energy on becoming ok with those facts of my lives, myself…

But the eternal vulnerability can wear on me. Disclosing something one time means being vulnerable forever — the moment of sharing, the interaction may pass, but the knowledge can be used against me at any time. It can come up at any point in the future. Once I make the decision (not that there’s always a choice) to disclose something, I let it go forever — the knowledge is free in the hands of the people around me, and I can never take it back.

I could go on a decade-long effort to refocus on invisibility, on passing, on keeping secret — I could purge my social circle, present myself as totally normal and hide anything that might indicate otherwise — and all it takes is one person, saying one thing, to crumble that carefully-built structure in an instant.

The first time anybody knew I was sick — oh hell, people knew before I even got diagnosed at 12 years old! — that shell was cracked, and I never know if, when, it’s going to shatter, burst wide open. In fact, I can probably count on it happening, at some point in my life. Probably the least opportune point when it will cause the most damage, right?

No matter how careful I am, I occupy a precarious position.

It’s hard to accept that there is always going to be a wall there when I make personal connections with the currently nondisabled. Their knowledge can only go so far. They can be friendly and supportive, but they come from a fundamentally different place. And that means that at some point, they will do something potentially hurtful. Not understanding that it is potentially hurtful. Because they can only go on their own experience.

So even with people who might be friends — or at least friendly acquaintances — I have to have that wall. That knowledge of potential hurt. With all the weight it carries.

It’s a price I accept — rather than the price I try to deny, and end up experiencing anyway.

It appears that the mother, at best, took advantage of her son having failed to log out and clear all cookies and personal history from his computer every time he leaves it for half a moment, and at best, straight-up hacked his account — read some things she didn’t like, and responded by posting things all over his page in an attempt to embarrass him and then going to the length of changing his passwords on his Facebook account and his email so that he couldn’t do any damage control after he found out about it.

She thinks that these actions constitute a “conversation” with her son.

The son lives with his grandmother. Someone, somewhere (I can’t find an attribution) claims that he and his mother had a “great relationship,” a claim that sounds suspiciously like the refrain that commonly comes from assaulters and abusers, from cheaters and absent parents and partners. They truly have no idea that something is deeply, thoroughly wrong with the relationship, and the signs of the second person in it — the object — protesting against that wrongness are lost on them.

Like, you know, the fact that her son does not live with her and prefers not to have any contact with her at all.

The mother is living it up in the face of all this attention. She gets to assert her ownership of her near-adult son and know that a great many will rally to her defense in response.

New plans on fighting the charges, as she believes she was fully within her legal rights as a parent to monitor her son’s online behavior.

“Oh yeah, I’m going to fight it. If I have to go even higher up, I’m going to. I’m not gonna let this rest. I think this could be a precedent-setting moment for parents,” she told KATV-TV. [source]

Denise New says she plans to fight the charges saying if the suit is successful it will be “open season” on all vigilant parents who seek to keep their children in line. [source]

“You’re within your legal rights to monitor your child and to have a conversation with your child on Facebook whether it’s his account, or your account or whoever’s account.” [source]

“If I’m found guilty on this it is going to be open season” on parents, New said Wednesday.

“You’re within your legal rights to monitor your child and to have a conversation with your child on Facebook whether it’s his account, or your account or whoever’s account,” she told KATV. [source]

“The things he was posting in Facebook would make any decent parent’s eyes pop out and his jaw drop,” Denise New said. “He had been warned before about things he had been posting.” [source]

Denise New acknowledged changing both passwords to keep her son from getting access to his Facebook page. She denied hacking into the account.

“He left it logged in on my computer,” she said. “It’s not like I stole his laptop.” [source]

Readers will note a common refrain in many of the non-strictly-news sources above (and found here): “What ever happened to de-friending?” As though this is a matter of a son allowing his mother to have viewing access to his page through her own account as a friend. The son may never have allowed his mother to have an inkling that he had a Facebook account: she still forced her way into it. Not in view of it, in control of it. This doesn’t have anyfuckingthing to do with who you friend and who you don’t.

Of course, most sites focus on the potential implications for parents’ rights, and there’s a good reason for that: our society cannot deal with the idea of children as full human beings with ownership of their own selves. It is firmly entrenched in our social consciousness that children are objects, possessions, things lacking full personhood, desire, decisionmaking ability, agency.

Much like women used to be (and are still, to some extent) considered, hm? Objects for the benefit of the full beings who own them. Women would be passed along from fathers to husbands, traded for physical and monetary property, no distinction between the two things in that transaction. Not identically, but similarly, children are considered objects owned by their parents much the same as wives were objects owned by their husbands. (I expect that mothers reading will feel this a little more intuitively than fathers might — knowing that oneself might be on the object end of that transaction can produce a different reaction, sometimes.)

It is interesting that the immediate reaction to this story on the part of adults, especially adults who have children, is to consider the parent’s plight in this story, completely neglecting the concerns of the child. And it reminds me how (feminist) abled women immediately rush to think about the plight of the caretaker in any story of caretaker abuse of PWD, completely neglecting the concerns of the person being given the care, as though they don’t even exist. As though they are objects: things that cannot be affected themselves, that can only affect the full persons in their non-lives.

It is telling, really, who we consider to be persons worthy of consideration, whose problems we consider to be important and worth solving — and who we consider to be persons completely ignorable, whose problems aren’t worth consideration and don’t particularly need any attention, much less any attempt at solving. (In fact, the solution to their problems might interfere with the solutions to the important problems — so they should be crushed if possible.)

This is what we are. People read this story of obvious, clear violation of boundaries, and think immediately on their own right to violate others’ boundaries: or else they resort immediately to blaming the victim for this clear violation of their own boundaries. The reaction more comment from non-parent adults.

How ridiculous, right? That a boy would assert his right to his own fucking life without his abuser’s interference. Especially when this parent doesn’t even have any fucking custodial rights! And we still rush to her defense. How poisoned are we?

So many people have complained that it is asking too much of abled people to stop using words they consider trivial: crazy, insane, lunatic, idiot, moron, dumb, blind, etc.

I beg to differ.

You know what is really damn easy? Erasing these words from your vocabulary. All you have to do is stop saying them.

You know what is really hard?

Confronting people on their use of same language.

We aren’t even asking you to do the hard work. We aren’t asking you to tell other people to stop using that language. We aren’t asking you to confront other people on their use of that language. We aren’t asking you to explain why it is problematic, to answer people’s questions, to deal with their redirection tactics, or to handle the attacks on and harassment of the people negatively affected by that language that such confrontations always seem to draw.

You don’t have to take the brunt of it. You don’t have to deal with the negative consequences. You don’t have to face employment discrimination, street harassment, caretaker abuse, and other people’s general cluelessness about our lives. You get to sit tight in your privilege, enjoying it without even realizing you’re doing it.

All you have to do is cut a few words out of your speaking and/or writing vocabulary. That’s it.

We’re the ones who are putting our safety on the line trying to change the cultural system that oppresses us.

Two seconds to reconsidering what you’re really trying to say? Easy.

Changing other people’s deep-seated attitudes? Really damn hard.

How do you think we feel when you complain that two seconds is just tooooo haaaaard for you to take on?

(Cross-posted at FWD.)

Today’s roundup brought to you by oh look a feather toy!

An acquaintance of mine shared a post that linked to Peter Singer’s latest piece in the NYT Magazine, “Why We Must Ration Healthcare.” Most of the article focuses on the fact that health care is currently rationed in the U.S., whether by price or by less tangible factors such as ER wait times. I don’t disagree with that part; that’s nothing more than a clear-eyed look at the reality that the American health care system has barriers to accessibility. Where Singer goes off the rails for a demonstration of Able-Bodied Privilege 101, however, is when he discusses how to put a value on human lives as a precursor to putting a value on health care. In order to demonstrate the utility of quality-adjusted life-year (QALY) in rationing health care, he uses the example of how an able-bodied person reacts to a hypothetical situation in which they become quadraplegic, and how their desire to live changes. He then goes on to present a situation in which persons with disabilities (PWD) are damned if they do and damned if they don’t: he suggests that if a PWD is happy with their life, they don’t need any treatment that would improve their lives, and if a PWD is not happy with their life, then it would be wasteful to spend money on treatment that would improve their lives.

I consider this a must-read for anyone who is new to disability rights. Pizza Diavola does an excellent job showing where Singer’s logic simply falls apart, and in fact his arguments do not make sense without assuming the supremacy of the able body. But disability is not an inherently bad experience; it only becomes this phenomenon of tragedy and suffering when society refuses to provide support for people of all sorts, rather than upholding the narrow and unstable health ideal.

Following Singer’s logic, we would pretty much never seek to improve our lives in any way because to do so would admit that we were not happy with our lives beforehand, and if we were happy with it, then it would be useless to do anything to change it. How this is seen as a rational analysis of New York Times caliber, I’m not sure. But apparently Peter Singer hates the wheel, the microwave oven, cotton fabric (admitting that life wasn’t good enough without versatile and insulating body covering!), the printing press, public education, agriculture, language, music, sunscreen, and buildings (admitting that life wasn’t good enough without shelter from the elements!). Among other things.

But because disability is constructed as a tragedic deviation, we end up with nonsensical, circular arguments such as these. And it has unfortunate influence, and will further marginalize people on the basis of their inherent inferiority and thus forfeited right to life (any life, according to Singer, who would have us all killed or otherwise eliminated rather than complicating things for the currently abled — and no, unfortunately, this is not exaggeration or extrapolation; he has advocated exactly this).

Help Find the Cure for Disablism!

Disablism is a common disorder which can begin in early childhood, though its symptoms are often much more marked in adulthood. Without preventative measures, disablism can grow into a chronic condition that becomes more difficult to cure with time. Early detection and proper treatment are key to helping those with disablism lead stronger, more productive lives.

FAQs

Is disablism contagious?
The jury is still out on this question. While some epidemiologists believe disablism may have a contagious aspect and may spread virulently, other researchers emphasize individual health habits and responsibilities.

What is the treatment?
Treatment varies by the degree to which the patient is affected. Treatment focuses on creating new, nondisablist behaviors. For patients unrectifiably deficient in empathy, legal remedies may be required. Please ask your doctor for more details.

What can I do?
Most importantly, educate yourself about disablism. Ask your health care provider, “am I disablist?” Equally important, watch for early signs of disablism in your loved ones and seek early treatment. Disablism is much more cureable in its early stages than when its victims become homicidal or harm others. In addition, help raise awareness about disablism. Discuss disablism and its harmful effects with others.

For more information and resources on disablism, call the Cure Disablism Network at 1-555-BE HUMAN.

This clip from British tv show That Mitchell and Webb Look has made the rounds as a short and sweet parody of gendered advertising. I think it is also useful as a look at medicalization and the way medical conditions are presented in popular culture.

Transcript:

[Blonde, average-looking woman standing in front of white background, reacting to voiceover by crouching and grimacing, with graphic overlay of radiating circles emphasizing different areas]
Woman: Ow. My stomach!
Man’s voice: Do you suffer from gut agony?
Woman: And my head!
Man’s voice: Tension head? [Woman nods, grimacing] Got that bloated feeling?
Woman [beginning to look slightly surprised and self-conscious]: Ooh…
Man’s voice: Inevitable wrinkles? The beginnings of lady moustache? [Woman covers lower half of face with hands] And now you’ve pissed yourself again? [Woman crosses legs] Women. You’re leaking, aging, hairy, overweight, and everything hurts –
[Young boy walks on set in white dress shirt splattered in colorful stains]
Man’s voice: — and your children’s clothes are filthy! No wonder men long for other, less clammy women. For God’s sake, sort yourself out.
[Image appears on screen of assortment of several hundred personal care products, captioned "APPROX $279.99, THE LOT."]
[Woman walks onto set toward couch, with large, bulging full tote bag on one shoulder]
Woman [tiredly]: Now I’m free to live my own life, my way! [falls back onto couch]
[Scene changes to white man in bathroom with razor]
Man’s voice: Men! Shave and get drunk!
[Man has satisfied look on his face as he opens medicine cabinet, finds glass of beer sitting inside, picks it up and smiles smugly, taking a sip]
Man’s voice: Because you’re already brilliant.
[Man smiles widely at camera as woman's hand appears, groping his chest]

ginmar speaks movingly about mental illness, military veterans, and the phenomenon of “fallen women.” A few pieces; there’s much more.

It’s a pain in the ass to experience. Frankly, you’re no fun to live around during this. I mean, people have been brought up on movie mental illness, where you turn into a sweet, soulful, funny, insightful, tragic, tormented character who Teaches Important Lessons, before dying in a beautiful way that gives the hero or heroine a chance to win an Oscar.

It’s especially bad if you’re a woman, because you’re supposed to live for others, do for others, and do this al behind the scenes. The fact is that women who transgress in some way—bad mothers, not mothers, convicts, the sick, the non-sexually rebellious—-are often abandoned. Women are supposed to stand by their man. What goes unsaid, what’s kept secret is that ill women are resented, dumped, and have to face a dual burden of illness and ill-treatment. There are approximately 6,500 homeless female veterans of this war. Homelessness is often the worst and final stop on the mental illness ladder. It’s bottom. Then, too, homeless women in general are ignored. When the truth is overwhelmingly awful and about women, people just shrug their shoulders and put it down to life. When women get angry about this treatment, they often find the mentally ill label used to stigmatize them.

[...]

Suicide tidied things up neatly. By killing herself, the victim had provided her family with a tragedy over which they could weep, instead of an inconvenient complication who aroused questions that were literally unthinkable for the thinkers of the day. With her gone, so was any reminder.

[...]

What’s interesting is that both male and female soldiers are often regarded in this way: better a flag-draped coffin than a living, complex, and often angry veteran. What a drag. Better a tragedy than a complication [...]

That’s the work of a certain class. The resentment is very much the attitude of the person who discovers that those who serve are also those who know their worth. That wasn’t supposed to be part of the deal. You’re supposed to work round the clock, then disappear when not needed, grateful and humble for scraps from the table.

Which is why maybe soldiers like me, especially women, are often greeted with sadistic gloating when we crumble.

Seventeen pills of six different sorts, my 24-hour drug regimen.

I 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.

The title of the Telegraph article: “Women who dress provocatively more likely to be raped, claim scientists. Women who drink alcohol, wear short skirts and are outgoing are more likely to be raped, claim scientists at the University of Leicester.”

The researcher who was interviewed spoke out about the misrepresentations of her work (she is an MSc student and this was her dissertation, which is also apparently unfinished).

According to current.com, the article has been pulled and corrections have been issued. It’s hard to see how they can explain away something like this.

The Bad Science blog offers this update:

Via @jackofkent, here are the articles Richard Alleyne of the Telegraph has written about recently. I’m not saying anything. I’m just saying. Is all.

www.journalisted.com/richard-alleyne

From Pharyngula. H/T hearshot

(Cross-posted at Feministe.)

***

Allow me to indulge in a little bit of inside-hockey.

Hockey is a very physical sport. Part of this sport is “checking” or “hitting” – basically running into an opposing player in order to tie him up for some time so he can’t be out there making productive plays for his team. (Brooks Orpik demonstrates here, making four hits in a fifteen-second timespan in what has been called “The Shift.”)

And there is a concept in hockey we call “taking the hit to make the play.” This happens when a team is trying to set up an offensive play to get the puck to the net. A player on one team will let the other team’s defenseman hit him as he passes the puck to one of his other teammates so that, in a reverse-psychology sort of move, that defenseman is tied up in finishing his check, instead of out there defending the puck from his teammates.

So basically, you are accepting that physical hit because you know it will increase your offensive chances.

***

Things got a little out of hand in the comment thread on my post about the painkiller ban proposal.

I am still adapting to writing for a larger site. It is important to me that PWD feel safe commenting with their experiences. IME, they are much less likely to contribute if they have to carefully moderate their tone and make sure not to offend anyone who has privilege over them. They need to be able to speak candidly about what is going on in their lives without modifying their framing to be acceptable to the masses. And, as has been often discussed on Feministe, while “diplomacy” and 101 education are valuable things to do, if we allow it in every thread, it makes it impossible to take our discussion to a more advanced level.

I focus on making space for PWD. People who are currently not disabled are welcome as long as they realize that they are not the focus in this space. They, their needs, their ideas, their conceptions, are not the center in this space. They get every other space in the world for that. Every other space in the world is specifically built to suit them. If they are willing to relinquish that focus for a time, to listen to PWD, to do their due diligence in educating themselves on the background issues, and treating PWD with respect and accepting when PWD say they are doing something wrong or harmful — then they are welcome.

If they would rather insist that their ideas are more important, more valuable, more reasonable — if they would rather argue with PWD, if they would rather assert their understanding of the issues as clearly better/more reasonable/more in-touch/more important — if they will not listen to what PWD are telling them, accept criticism, and bite their tongue for one minute in their entire life to give deference to how PWD define their space and their experiences — then they are not welcome.

I am sure most of you are familiar with this framework. This is a feminist site. If we were speaking about men and women, rather than abled and disabled, would not most of you advocate the exact same definition of space?

Yesterday, we saw a lot of the latter comments in a thread where people with chronic pain were very clearly communicating the effect this policy would have on them. We saw comments that explained why the policy was being considered — as though the “why” hadn’t been laid out in the original post, reasonably, without argument from emotion.

And I responded angrily. The development already had me quite upset. PWD have to jump through so many hoops just to get barely-adequate care in this society. There are new restrictions every time you turn around. Commonly, you have to go through a dozen steps to get a product or service that’s watered-down and half the quality of what an abled person can access in one step. This is the second shift for the sick. It is very hard for many abled people to understand exactly how much we take on when we become disabled. The onus of access lies with the disabled person to correctly maneuver all the complicated and sometimes contradictory regulations, to take all the necessary steps in the right order at the right time, without mistake, because — like those long math problems in second grade — if you screw up one tiny thing, everything else might come tumbling down with you.

We had commenters “helpfully” inform us that we could just get a script for the narcotic agent alone and take Tylenol with it — and then come back defensively when PWD responded by saying but that puts an unfair burden on us when we are carrying such a heavy burden already.

I wish I’d had the energy to moderate that thread calmly, evenly, without emotion. To carefully explain to people why I believe what I do, why certain things are harmful even if they don’t seem so from the outside, why this regulation would be wrong and discriminatory, and why it is evidence of a larger problem in the structure of our society. To explain all of this in a measured, reasonable tone, with background and sourcing.

Academically.

I didn’t have that energy. I have chronic pain conditions. I am already pushing myself so hard to be able to write what I want to write while I’m guest blogging here, and handle the comments, on top of handling my life. Yeah, you know, I have one. I have to take my 14.5-lb feline leukemia positive cat into the vet for an exam and vaccinations to make sure he doesn’t catch some random infection and die. And take his 10lb sister in too to make sure she’s vaccinated, so she doesn’t end up catching it from him and getting sick herself. I have to help my husband prepare dinner. I have to clean the filthy bathroom. I have to take a shower, something that is enormously taxing on me. I have to run household errands. And, you know, visit with the in-laws for the holiday. All these things sap my energy.

And when my energy is not tip-top, my coherence suffers too. I have trouble putting words together. I get flustered.

So I’m not going to be able to respond reasonably every single time. Them’s the breaks.

Anger. Anger is a feminist issue. The anger argument is a tactic that the privileged party uses to shut down complaints from those lacking privilege. We recognize this when it is a man telling a woman she is too angry, hysterical, hostile, harridan/harpy/banshee/we all know the slurs. It is wrong. It is a way to simply dismiss the woman without having to actually pay attention to what she’s saying. It is taking advantage of the privilege you have over her.

I don’t give a flying shit whether that’s what you intend to do when you pull the anger argument on someone — anyone — a person of color, a disabled person, a queer person. This is well recognized in feminist theory; the argument that the unprivileged person is “too angry” and that people would be more receptive to their arguments if only they would state them sweetly, “you catch more flies with honey than vinegar” –

Don’t tell me you don’t recognize what bullshit that is when the non-privileged person is complaining about something that harms them, and the privileged person cries that they just can’t listen to you until you put it in such a way that soothes their ego.

Oops, I’m getting angry and unreasonable again, aren’t I?

So I responded angrily, mockingly, to comments that I thought were unproductive. I’ll give you a tip right now: last year I made sure to be calm and patient with a set of difficult commenters on one of my guest posts, and it went on for a hundred or so comments, before he gave up and began saying that I and other posters must just be depressed because we disagreed with him.

It did me a lot of good to engage patiently with that guy, mm? He walked away with respect for my argument, did he? No. He didn’t. He walked away the same as the opposing commenters walked away on yesterday’s post.

Anger is valid. Anger is a rational emotion in response to a world that is unjust. And to deny a person anger is to deny their humanity. It denies them the full range of human experience. It denies them the ability to process events in a natural, human way.

I wish I had been well enough to comment calm and patiently on yesterday’s post. I am being honest here. I wish I had been able to just explain diplomatically why I see things the way I do. Because that can be a valuable thing to do.

However, doing so can also transform that commenting space to one that – again – centers around the privileged person’s conception of the world. It forces other commenters to carefully frame their comments in a way that is palatable to the privileged person. And thus it completely shuts the door on a more advanced conversation about the issues affecting them.

No offense, but I’d rather shut the door on the privileged people’s protestations than on PWD’s ability to explore political theory relating to them. Sorry.

Oh: and pandas are cute.

***

My writing is, as a commenter described at one point, is a messy marriage of personal and political.

I write from a personal perspective, but I draw political conclusions from my experiences and observations, and those of other people like me.

It may not be a style of writing that appeals to everyone. It may not be palatable to the masses.But it is important.

I entertain abstract, academic style discussions. But I connect them to reality on the ground. This is vital. We can have as many cute little reasonable debates as we like, but if we never stop to pay attention to what people are actually experiencing in this world, what fucking good are we doing?

We all have different roles. And I know mine.

I bring my personal experience to the table. And there is a reason for it. And I am reminded of it every time a reader comments or emails me to tell me how similar their experiences are, and that they’ve never heard anyone affirm them before. They have never read something in a political context – and make no mistake, feminism is a political theory – that addresses their life.

People with disabilities are largely segregated from wider society. Institutionalization is alive and well today. And barriers to access keep many PWD stuck at home, unable to participate in all different aspects of society.

And many of us are out there, mixed among the wider population — but invisible. Our disibilities are not readily apparent. And therefore our experiences are invisible as well.

My writing aims to make those experiences visible. To expose them to the rest of the world. To force them in the faces of able-privileged folk. So they see that we exist. So they can no longer walk around under the impression that we are not among them.

When our experiences are invisible, our needs are not addressed. Society is already built around the needs of the currently able, to the exclusion of the rest of us. We have made some strides, but there’s still a long way to go. And part of that is making the rest of society realize that people with disabilities are all sorts. We are in wheelchairs and walkers, we use canes. We use medication and TENS units you can’t see. We use braces. We are on bed rest. We have assistant, we walk alone. There may be a visible physical difference or a noticeable behavioral difference. Or we may look and act just like an abled person.

Most of society has trouble recognizing this wide range of disability. When disability is recognized at all, it is within the narrow narratives that PWD have come to recognize: the pitiful/tragedic story, how awful it must be to be “half a person“, or the inspirational/supercrip story, watch in amazement as sie overcomes hir disability! There really isn’t room for any other kind of story in wider society — and yet our stories are so diverse. And so important.

That is why I tell my story. It is only one story. But there are many people like me – and they’re out there writing too. And I want to make sure our stories are visible. And my goal is to make them so visible that they can no longer be ignored.

Everybody needs to be exposed to the reality of living with a disability. Everyone needs to be exposed to what actually happens, in practice, in our lives. All the theoretical discussions in the world aren’t worth shit if we’re still left to die on the streets in large numbers.

Unfortunately, able-privileged spaces (that is to say, almost every space in the world) tend to entertain only those theoretical discussions. The academic, the abstract. To the exclusion of what is happening on the ground. Because that’s messy and hard to reconcile cleanly in a calm, level, reasonable way.

That’s why I tell my personal stories. Because there are lessons to be drawn from them.

The thing is, when I tell my personal stories, I expose myself to a society that is ignorant at best, actively hostile at worst. I expose myself to all the biases contained therein. I expose my self to the public, and everything it can bring.

I take the hit to make the play.

***

I handled yesterday’s thread imperfectly. And it exposed me to a set of people who took offense at my anger – yet found it completely appropriate to make insinuations about my character, my state of mind, and even my sobriety – in one case stating “…this kind of vehement, angry response in a discussion that is relevant to one’s ability to obtain an addictive substance seems eerily familiar to me, as someone who has lived with an addict for nine years. When a rational person suddenly behaves irrationally when his supply is threatened…”

You can find the discussion yourself, at the web site of one of the key commenters in that thread. Right now, I’m just hurting. I tried. I messed up. But fucking hell, I am putting myself on the line in hopes that maybe, in some small way, I can advance the conversation on this issue so that other people currently harmed by certain attitudes might some day see a better world — and maybe find a way to cope in the meantime.

And it hurts.

I’ll leave you with the words of Cara and Abby Jean.

The thing is

The thing is, most of us feminists know well enough that when an anti-choice man comes into a pro-choice woman’s space and tell her that she’s wrong on the subject of her own reproductive rights, there is, no matter his phrasing, nothing “polite” or “reasoned” about what he is doing.  Most of us feminists know perfectly well that the man is still arguing that the woman, the woman to whom he is speaking as well as all women, does not have a right to make decisions about her own body.  Most of us feminists know that when that man gets a negative response, and he counters with an argument about how the woman shouldn’t take it so personally, he is displaying privilege.  Most of us feminists know that there is nothing “abstract” about a woman’s right to bodily autonomy, and that it affects real women’s lives.  It’s not generally lost on us that most of those who spend time treating the “abortion debate” as an excuse to show off fancy rhetorical skills are men.  We generally know that when women point out that hey, this actually affects our lives, we are shot down with the admonishment to not be so “emotional” on the subject.  And we generally know that this is wrong, and hugely misogynistic.

But ah, it’s called “privilege” for a reason, isn’t it?  And so for many, many feminists, these simple, basic understandings that we lament so many men not getting, go out the window when talking about a different oppressed group.  And white feminists will tell women of color to stop being so emotional about the “objective” debate regarding whether or not something is racist.  And cis feminists will tell trans women to stop being so emotional about the “objective” discussion of whether or not their gender identities are legitimate.

And temporarily able-bodied feminists will tell women with disabilities to stop being so emotional about the “objective” discussion on whether or not their experiences are valid, and whether or not there is real reason for their concerns about decreased access to needed services.

And then they will fail to see why what they’re doing is wrong.  Because, well, that anti-choice guy, he’s an outsider.  But us, we’re all feminists around here!  And no other identity could possibly matter!  So we’re all friends!  And how could you dare treat the privileged, ignorant, sticking her foot in her mouth “friend,” the same way that you treat the privileged, ignorant, sticking his foot in his mouth “enemy”?  It’s so unreasonable!  They were just making a reasoned argument and demonstrating their rhetorical skills on this fascinating matter!  STOP BEING SO IRRATIONAL.

I am a person who is privileged in virtually every way other than her sex.  And this is exhausting, infuriating, and wildly depressing to me.  I can’t even begin to imagine the feelings of those women facing further oppressions, who are the actual objects of these patronizing diatribes about reason and logic, from supposed “friends” who know enough to know better.

it is so hard…

it is so hard for women to talk about their own lives and experiences without being attacked. even sharing those things with an audience expected to be mostly sypmathetic, or at least expected not to fashion the author’s own words into a weapon to attack the author herself, is a risky and sometimes very dangerous act.

a lot of these problems seem to stem from a reluctance to give any deference to the person’s own account of their lives and experiences. we think that our academic skills, our research and our logic, can give us full and complete insight into and understanding of an issue – regardless of whether it is something that could ever affect our lives.

but there are things that you cannot understand until you have lived them, cannot learn unless you are taught by people who have lived them. whether it be the amount of hassle and difficulty caused by adding another separate medication to an already complicated pain management regiment for a person with a disability, or how the timing of bus transportation can dramatically increase child care costs for working single mothers – these things are learned most effectively from those who have experienced them.

so to enter a space where a person is talking about their own experiences and to tell them they are wrong, that they will not be affected that way, that it is not that big a deal, and that you know so because of your research or your logic – that is the opposite of learning. that is affirmatively shutting down discussions which could lead to learning. and it makes it much less likely that the person with experience – the person without whom you cannot learn the essential details of the issue – will be willing to participate in such a discussion in the future.

The reason they give, at the end of the article: “the benefits of using the medication for pain relief at recommended doses outweighs the safety risks at this time.” If nothing else, it is somewhat encouraging. If this is their thinking on Darvon/Darvocet, we can hope that similar thinking will guide their decision on Vicodin/Percocet.

***

And according to the New York Times, the FDA

… is not required to follow the recommendations of its advisory panels, but it usually does.

Emphasis mine. In other words: the ball is rolling.

Vicodin and Percocet are two commonly-prescribed narcotic painkillers. They combine hydrocodone or oxycodone (respectively), the narcotic agent, with acetaminophen, brand name Tylenol.

Acetaminophen is coming under fire because abuse of the drug can lead to liver damage. The safe limit for acetaminophen has generally been regarded as 4,000mg per day. That translates to two extra-strength Tylenol (500mg each), four times a day (eight pills total). The dose of acetaminophen in various combination drugs varies, usually 325mg but ranging up to 750mg.

The panel voted against a ban on over-the-counter cold, flu and sinus relief medications, the vast majority which contain acetaminophen. Apparently these medications aren’t a concern, despite containing just as much acetaminophen and being available over-the-counter, where consumers do not have a doctor and pharmacist counseling them on how to take the medication.

This is not to deny that many practitioners — including, infamously, dentists — throw out prescriptions without a second thought. But the number of such practitioners is much lower than commonly perceived, and restrictions on narcotic painkillers will have a negative effect on chronic pain patients, who have to jump through an increasing number of hoops to obtain effective treatment.

I’m sure many people will jump in the comments to “inform” me that narcotic use for chronic pain is dangerous and inadvisable. This is simply wrong; when there is a medical professional overseeing a patient’s pain management regimen, carefully monitoring the use of such drugs, these pain killers can make an enormous difference in a patient’s quality of life. Dosages will have to be watched, as patients develop a tolerance to narcotics over time, but this does not preclude the use of narcotics whatsoever.

In medical terminology, there is a distinction between addiction and dependence. Generally, addiction occurs when a person takes a drug for which they have no medical need, whereas dependence is a patient taking that same drug for a medical purpose. Another way of putting it is that an addicted person uses a drug to escape from life, whereas a dependent person uses a drug to get on with their life.

With knowledge of the potential for dependence in mind, painkillers are a viable treatment option for chronic pain patients. Many patients do not respond to other available treatments (whether pharmaceutical or otherwise), or they do but those improvements ultimately still leave them in considerable pain. The range of available treatments today may not work for every patient — there may be other conditions and considerations that would make one drug dangerous, or another drug might trigger severe side effects, or another drug may just plain not work for them. Every body is different; every person’s body chemistry will interact differently with a certain drug. Considering this, it is important to leave open the option of using narcotic painkillers for chronic pain patients.

They are, obviously, not a first line treatment! Trust me, we know that. But that doesn’t mean it cannot therefore be an available treatment at all.

One article attempts to assuage the concerns of such patients, in a somewhat patronizing tone. A doctor says that practitioners can simply prescribe acetaminophen-free narcotics and advise the patient to take a Tylenol with it. If a practitioner is going to advise that much to a patient, why can’t sie just advise, “Don’t take more than X per day, and check with us before taking any over-the-counter medication,” in the first place? If it’s as simple as telling a doctor to advise a patient on how best to take the medication — why can’t they just do that, instead of taking away an important treatment option for patients?

It is telling, I think, that they voted to ban the pain killers but not the Nyquil. They see narcotic users as other people — the poor people, the drug addicts and traffickers. But the family next door uses Nyquil. The family next door is trusted to be responsible. The Other People are not.

I have been using Vicodin as a part of my pain management routine for almost seven years. As I wrote in a letter to my doctor earlier this year:

The adjustments we made to my other medications were the driving force behind my ability to take on an increasing amount of work – from six hours a week as a restaurant greeter when I met [my doctor], to 20-30 hours a week retail sales, and now to a full-time nine-to-five clerical job. Up until two months ago, for all the change that I went through physically, my hydrocodone usage only went up a small amount – from 1.5/day average to 2/day average.

And I do not rely solely on medication to treat my pain and fatigue. I practice good sleep hygiene: I make sure to go to bed around the same time every night and wake up around the same time every morning, allowing myself 8-9 hours of uninterrupted sleep. (I know that is actually more than recommended for healthy adults, but because research shows fibromyalgia symptoms seem to stem from an interrupted sleep cycle, making the sleep less restful, I need a little more to make up for it.) I make my sleeping environment comfortable in terms of light, sound, and temperature. I maintain a very careful balance of physical activity and rest. I do my best to get light but regular low-impact exercise – I’ve done everything from light walking to weight lifting to Pilates. I am careful to identify things that trigger pain, such as clothing that is too restrictive around the shoulders and hips or certain chemical odors, and then eliminate them from my life to whatever extent possible. I have been through cognitive-behavioral therapy; I have been to stress-management workshops; I know breathing exercises and other coping strategies. I have an entire collection of heating pads at home – portable ones, electric, moist microwavable pads – which I use quite frequently. Dr. H recently helped me procure a TENS unit to treat my recurrent back pain, which has been the single biggest factor in my ability to work this new full-time job. It reduces my pain significantly and thus reduces my use of the pain killers.

I have also tried a variety of other techniques and treatments that just ended up not working for me. Those listed above are those that turned out to work, and each is an important and indispensable part of managing my chronic pain.

Vicodin is only one part of my pain management routine. But one that would significantly affect me if it were taken away. I would have to quit my job. I would do a lot less work around the house — and my husband already does more than half, even when I’m not working. I would be confined to my house, as the amount of trips outside (grocery shopping, doctor appointments, etc.) would be significantly harder on me. As I explained a bit further down in that letter:

I explained to him that, for everything my other medications do for my pain, there are many times where if I want to be able to get up and do something, I need the pain killers. It not only kills the pain, so to speak, but it gives me energy – to try to describe it more accurately, it lifts a weight from my body, so that I can move more freely. Without it, unless I have been doing absolutely nothing but resting for days previous, just moving, lifting my legs and reaching my arms and pushing my body through the air, is cause for a sort of generalized, all-over ache. I feel it in the skin and muscles of whichever part I am trying to move. With the pain killers, that feeling is gone. I can stand up and walk; I can reach to take something off a shelf; I can write; I can lift and carry, and the only pain I will feel is if I actually do strain anything unnaturally.

So whether I’m wanting to fill the cats’ dish with kibble, or gather my dirty clothes to take down to the laundry room, or go out to the grocery store for some milk and bread, I need those pain killers. Whether I’m wanting to sit in the shower for fifteen minutes, or dry my hair, or prepare myself a meal, I need those pain killers. For these activities, I don’t need them every time. But I also cannot go without them every time. I need them some of the time, to keep that careful balance so that I am not so overwhelmed with pain that I find myself unable to do those things at all.

You can see how this would extend to work activities. If I want to get myself ready in the morning so that I am presentable and professional; if I want to alphabetize the files and begin to put them away; if I want to walk around to the various places I need to go inside my workplace throughout the day, fetching applications and delivering mail – to do these things, I need the pain killers. And because this work is regular and sustained, I will need them more regularly than I do for the home care tasks mentioned above.

This letter was written after a nasty incident with another doctor in my clinic. She gave me all of twenty seconds to explain why I was there before launching into a very loud diatribe about how I was crazy and ruining my life, and she was going to send me to rehab. (If you want that story, it’s highlighted in blue here. The yellow blocks are the purely-necessary background, since the letter is so long.)

That left me with no option but to go to the emergency room to ask for a Vicodin script. The experience was humiliating. Nurses outside my exam room joked to each other “We should put a sign on the door that says ‘We are all out of Vicodin, go somewhere else.’” The doctor who saw me gave me a long and patronizing lecture, telling me that I should be seeing a pain specialist and not having my primary doctor coordinate my care, guilting me for using the stuff at all, with many dramatic sighs and furrowing of the brow.

Before he gave me my prescription, I asked if he had a recommendation for a pain specialist, and he gave me one. I called them up. They requested that I send over my medical records before they would make an appointment, because the doctor sat down to read them for every new patient so that he could establish a customized treatment plan. I did as they requested and two days later, I got a call. His receptionist told me that they were not going to schedule me an appointment, because the doctor said “There’s nothing else we can really do for you” and said to continue doing what I was already doing with my primary doctor.

In other words, I was doing it right.

This is the kind of regular obstactles that are set in the path of chronic pain patients who use these medications. And it seems like every time we turn around, there’s another restriction.

It is good that they are turning their attention to the dangers inherent in acetaminophen. But there are ways to address this without making life that much harder for another set of people. Am I going to have to take a higher dose of narcotics now because they want to “protect” me from the danger? I don’t particularly want to.

Hat tip to Annaham.

(Cross-posted at Feministe.)