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.

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.)

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.)

– the women around the world who will be subjected to the stereotype Pfleger reinforces, of the overly emotional, unrelentingly ambitious, single-mindedly selfish woman?

Oh, no: “– Obama?”

Well, shit, I suppose my priorities are out of order.

Nobody’s ever defended themselves against assault charges by claiming “it doesn’t hurt when I punch me,” and you’d presumably think it pretty ridiculous if they had.

I’ll let the more experienced cover the article as a whole. But I just wanted to pick out this bit:

And as part of other anti-obesity measures, school officials should consider implementing programs to help girls build social skills, they added.

…….

*faint*

Ugh. There’s so much in this one little quote, I just can’t think of how to address it all.

There’s the fact that apparently a girl’s position on the social ladder only begins to matter to adults the moment she starts showing a little chub. No mention of the social ostracization, including the emotional harm—all the way up to and including depression and suicide—and the physical harm involved (ask my friend Mike what he faced as an unpopular child in school).

There’s the fact that, for goodness’ sake, these are children! My husband was a very chubby child, but he grew up to be 5′9, 120lbs, and plateaued at 140 when he was weightlifting. I was a chubby little girl, and grew up to be 5′8″ and 125lbs at the highest before I got on my current medication.

There’s the fact that you can’t just swoop in and “teach” a girl “social skills.” The hierarchy that exists in elementary, middle and even high school is far, far more complicated than adults give them credit for. Girls who are perfectly “skilled” socially are still ostracized. Even if a girl is a late bloomer in the social skills department, her position on the social ladder may be cemented enough that it doesn’t help her any. And popularity can be based on absolutely random shit sometimes that has not a thing to do with whether you have social skills.

There’s the fact that maybe the girl is perfectly happy with the friends she has, and doesn’t particularly want to be friends with the girls she perceives as “popular.” I knew I wasn’t high on the popularity list in high school (and I was beyond skinny, by the way), but I had no delusions that I would lead any better a life if I was. I had amazing friends and I wouldn’t have traded them for all the prep cred in the world.

And finally, to state the fucking obvious, there’s the fact that maybe, just maybe, these children are unpopular BECAUSE they are fat.

*head.* *desk.*

Update: Just wanted to add a slightly different perspective: Could it be that, besides popular girls being selected in part for their body type, they also feel such intense pressure to remain thin that they’ll do anything to keep that status? As usual, it’s a double-edged sword here.