FWD/Forward » fibro

Depending on narcotics

amandaw — Fri, 23 Oct 2009 19:29:55 +0000

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.

Ill

kaninchenzero — Thu, 15 Oct 2009 16:35:07 +0000

The topic of mental illness came up again with the latest large-scale hate crime against women to make national news. It’s a nice easy narrative for George Sodini to be a psycho, to be crazy, to be mentally ill because then we don’t have to understand him. We don’t have to relate, because we’re not like that.

Thing is, we’ll never know if Sodini was mentally ill or not. We can’t tell from what he left behind, and he’s no longer around to ask. The things he wrote aren’t all that unhinged; he just took the workaday hatred of black people and women that is everywhere in our society and picked up a gun and went hunting.

And the mentally ill means violent narrative is false anyway. Mental illness correlates with an increased risk of being a victim of violent crime, not of committing it.

It’s been said before, but it bears repeating because there’s so much silence and stigma and ignorance surrounding mental illness. I’ve had kind of a lot of experience with mental illness and the mental health professions. Some of it may be triggering.

I have taken (in no particular order) Prozac, Zoloft, Paxil, Effexor, Serzone, Xanax, Ativan, Risperdal. I’ve self-medicated with alcohol a lot and smoked cannabis and taken LSD when I could get it. I have been diagnosed, at various times, with clinical depression, bipolar type I disorder, bipolar type II disorder, borderline personality disorder, post-traumatic stress disorder, gender dysphoria disorder, depressive psychosis, and paranoia. I strongly suspect that I have Asperger’s Syndrome, which would explain a lot of my symptoms, behaviors, and difficulties. I have spent time in private and public psychiatric hospitals and spent years in weekly or twice-weekly therapy. I have damaged myself in ways ranging from very small — pulling on my hair repeatedly — to very serious — shooting myself in the left hand between the third and fourth metacarpal bones. I still have PTSD-like symptoms from the last and from growing up in an abusive environment, though episodes of it get farther apart as time passes. I have had suicidal thoughts that became elaborate plans. There were times that the only thing keeping me alive was someone needed to feed the cat. I am not alive for big important reasons; I am alive for small stupid reasons. I am alive because I didn’t want whoever found me to suffer the trauma of it. I have suffered delusions and intrusive thoughts and I have always had minor hallucinations (words printed on a page are red instead of black, patterns on a floor or wall shift while I look at them). I often have trouble understanding people when they talk and try to pass it off as being hard of hearing. I’m not; I hear fine. I have trouble processing auditory information and especially picking conversation out of background noise.

You’d think I was dangerous. I’m not. Really. I’m not even dangerous to me. Damaging myself — like it is for so many people who self-harm — is a way to stay alive, to cope with trauma. I have better ways to cope now and I don’t do that any more, but sometimes when I’ve had a really hard day and I hurt a lot and the noise in my head is very bad I remember how comforting it was to draw a blade across my arm, to feel the skin part, to see the blood well up, and how it made the noise go away for a while. Maybe it makes me crazy, but that is a warm fond memory for me. And it is what I needed to do when I needed to do it. I have the same memories about smoking, and I don’t do that these days either.

I’m much better now than I was. There are long periods where I don’t need psychiatric meds at all. But I am not cured and I never will be. I will always have mental illness in my life, just as I will always have fibromyalgia and physical pain. I’m back on an SNRI now and it’s helping and that’s good, because I could feel the old illness patterns coming back. Things have been bad lately with the economy. But I’ll be okay. I know how to cope with the bad things in ways that aren’t so drastic. There are people I can ask for help. I’m not alone.

Even if I am crazy.

Who hates to hear they look great?

amandaw — Mon, 12 Oct 2009 23:18:10 +0000

(Originally posted July 2007 at three rivers fog)

Over half of the chronically ill*:

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

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

Absolutely.

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

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

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

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

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

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

ARGH!

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

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

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

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

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

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

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

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

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

Where I jump in and defend pills…

Ouyang Dan — Sat, 10 Oct 2009 16:58:10 +0000

Moderatrix note: This post is the love child of my coming to terms with a need and actual want of pills.

Several brightly colored jelly beans lie on a jade look table surrounding several different pills. In the background are pharmacy bottles and a multi-colored pill reminder.

When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug. Or, they will insist that we are just addicts who refuse to find ways to manage our pain.

And for some of us it is a type of shaming that is hard to get out of our heads. For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them. It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.

I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care. It was incredible and refreshing. She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back. That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications. She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s. This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors.

So, now there are pills. Seven of them. Only two daily use, and the rest to be used “as needed”, which is something I rather like. The Lyrica and the Topamax are gimmies, because I actually get some benefit out of them. They improve my quality of life in a general manner. Those are the the red and white one and the tiny yellowish one next to it (the jelly beans in the picture were my idea of a funny…HA! C WUT I DID THERE?). Lyrica helps me not want to throw myself out the window* (which would be a feat w/ the window protectors on our sliding door-sized windows). In other words, it means mobility and movement, once I have adjusted to the side effects. Yes, it takes a while to adjust, but it is worth it. The Topamax, and anti-convulsant, is given to me off-label for the constant Not Migraines that I have (24/7 for almost 5 years now). It dulls the daily pain, and sometimes gives me mostly headache free days, which liberates me to do silly things, like stand up. It also has side effects, such as a metallic taste in my mouth. But I know this, so I expect it, and the benefits outweigh the gains, and eventually they fade. For now, I switch to plastic cutlery and all is well with the world.

Sometimes, though, the headaches still break through. That is where the pill above the Topamax comes in. If you have had major surgery you might recognize it. It’s Promethazine, or Phenergan, usually prescribed for nausea caused by anesthetic, but has an off-label use of relieving headache pain, and being a mild sedative. This I can cut in half and only use during those times I have headaches not held off by the Topamax, and greatly reduces my need for a narcotic pain reliever. Because it works as a pain reliever it also helps me sleep when the pain is bad. Always a good thing.

Which brings me about to the big pill…my buddy, House’s and yours, Hydrocodone, or Vicodin. I have given up any delusions that I can live my life without one, and my doctor gently agreed. She understood my concerns of addiction and dependency, but reminded me that regular OTCs won’t help me with the breakthrough pain that my regular meds won’t cover. Something I often forget is that Vicodin does something that a lot of scoffers don’t think about (something apparent if you watch House); it gives me some of my life back. It lets me do frivolous things like get out of bed, cook meals, go places with my family, and even have sex with my husband, which is something that many doctors don’t consider in patient care. People are too quick to assume that someone using Vicodin is automatically an addict, or that they aren’t “managing their pain”. But those of us using Vicodin are doing exactly that, we are managing our pain, with the advice of our doctor, in a manner that is right for us and our families and loved ones. That choice is between the patient and hir doctor, and family/loved one if zie chooses to share. If. A 30 day supply, thanks to the Topamax, Lyrica, and the as-needed Phenergan will last me about 90 days, give or take. It’s a total win for me. Plus, my doctor is so awesome that she has given me her email to allow me to renew the prescription without a lot of hassle.

The pink pill is Meclizine, or Antivert. It is an as-needed pill for dizziness and nausea caused by Labyrinthitis, which puts a picture in my head of David Bowie whirling like a dervish. It is chewable, and I have to take it with a small amount of food. The dizziness was a new symptom, because for some reason my tympanic membrane has been billowed out for quite sometime, causing me intermittent vertigo. Again, since it is as-needed, I don’t mind it so much.

The last pill is for the chest pain I have been having, which is apparently the result of a suspected spastic esophagus, and is Zantac. It is another as-needed pill. The chest pain is rare, and new-ish, so there is no reason to have a regular med. I can also try to take Tums first, the doctor tells me, so the need for this med might be less than that.

There is also a cream for the inexplicable rashes that recently have developed on my arms and legs, which sometimes respond to a topical Benedryl, but sometimes doesn’t. It is a steroid, so it is another thing that I can take only if I need it, and only if Plan A doesn’t work.

I can not stress enough how wonderful it is to have a doctor who prescribes things that I can take only if I need them. This keeps me from taking too many things at one time, and reduces the chance I will have an interaction complication. I also can not stress enough that pills are not all bad all the time. It is certainly true that there are probably people out there who abuse pills and take too many of them. It is probably equally true that some doctors are too quick to prescribe too many meds too quickly to make a patient go away. But at the bottom of the medication issue is the fact that how much or how many meds a person takes is between a patient and hir doctor. It isn’t the job of a drive by concern troll to judge or offer suggestions on the care agreed upon by those parties.

*That’s a joke. What that means is that it keeps me from being in so much pain that I literally can’t get out of bed, while letting my life pass me by.

Photo by OuyangDan, Creative Commons attributions apply.

Originally posted at random babble…

It’s Your Fault: Socially Acceptable Disability and Popular Causes

s.e. smith — Wed, 07 Oct 2009 11:39:03 +0000

Read a Czech translation of this post, done by Vera! Thank you, Vera!

In the furor of discussion on my post about breast cancer awareness campaigns which use exclusionary tactics, several commenters brought up some important points when we talked about why breast cancer has become such a high profile cause. Anna pointed out that breast cancer awareness started as a grassroots movement among women who were angry about the lack of awareness and the large numbers of preventable deaths going on, many commenters (including myself) pointed to the potential monetary gains to be reaped for companies which support charitable causes in order to be seen as socially responsible, and both kaninchenzero and Amandaw referenced the fact that breast cancer is a form of “no fault” illness, in the sense that people who get breast cancer are presumed to be innocent victims. The cancer, in other words, is not their fault.

This is not another post about breast cancer.

But it is a post about why some medical conditions become popular causes, and others do not. Because, in America, we definitely have ideas about what makes a good cause, and what does not, and a lot of those ideas are rooted in the idea of personal responsibility. This concept has deep roots in American culture and society, and it has pernicious and lingering effects which continue to this day.

The entire nature of American social policy is specifically structured around the idea that we can determine who is at fault for everything, that specific individuals can be faulted for things, and that those individuals should not be helped. Take the American approach to the poor. Despite ample evidence to the contrary, many people seem to believe that people should be held personally accountable for their poverty. Even though poverty is a classic example of an intersectional social issue in which the class one is born into, one’s race, and one’s gender all play a role, people persist in thinking that if poor people “just worked a little harder” or “showed some initiative,” then they wouldn’t be poor. I actually had a sociology professor tell me once that if the poor “weren’t so lazy, they wouldn’t be poor.”

Lung cancer was specifically brought up as a great example of “it’s your fault” in action. Lung cancer is the deadliest cancer in the United States, in terms of numbers of people who die from it each year (so says the American Cancer Society). However, it is not nearly as popular, as a cause, as breast cancer. Why is that? Because only icky gross people who smoke get lung cancer.

That’s right. Did you know that people exposed to carcinogens due to their jobs/social class/homes, second hand smoke, particulates in the air which cause cancers, asbestos, etc, don’t get lung cancer? Only smokers do. Fact! And that means that lung cancer can safely be ignored, as a cause, because people are personally responsible for getting it. I’ve known a few people with lung cancer in my day, and every one of them has had some version of this conversation over and over and over again during diagnosis, treatment, and recovery:

A: “I have cancer.”

B: “That’s terrible, what kind?”

A: “Lung cancer.”

B: “Oh.”

A: “…”

B: “Do you smoke?”

Cardiovascular disease is another example of a very serious medical issue which involves huge numbers of people and is not highly publicized. Sure, the American Heart Association has some PSAs out, and some branded products of questionable usefulness, but many people are not aware of the scope of cardiovascular disease and its causes. Screening, prevention, and treatment are not as freely provided as services to support people with more palatable conditions. Why? Because only gross fat lazy people get cardiovascular diseases, so it’s their fault, therefore, it’s not a social cause.

Diabetes, again, another condition which is deemed to be the fault of the person who has it. If you are diabetic, it must be your fault. In addition to displaying a limited understanding of diabetes and how diabetes works (hey, did you know that there are different forms of diabetes?), this is also not terribly beneficial when it comes to actually dealing with diabetes.

The list goes on. You get the point. If a medical condition can safely be blamed on the person who has it, we can safely and collectively ignore it, as a society. If we were to admit that these conditions should be social causes and should be addressed, that would be tantamount to saying that we should provide support to people regardless of fault. And that, as we all know, is socialism.

AIDS, strangely, is a condition associated with personal responsibility which has become a cause, to some extent, although not on the same level as breast cancer. I think that this is in part due to some serious grassroots lobbying on the part of very diverse folks. But at the start? AIDS was written off as “gay cancer” and ignored. It was only after people realized that things like a tainted blood supply, needlestick incidents at hospitals, and heterosexual sex could be vectors of transmission that AIDS started enjoying some popular attention. AIDS was also furthered as a cause when prominent members of society openly discussed the fact that they had AIDS, humanizing the cause. Yet, AIDS continues to be a highly stigmatized condition. Fundamentalist preachers continue to rant about how the gays are getting their compeuppance, for example, and people with AIDS are usually assumed to have gotten it because of risky sex or drug abuse (in all fairness, IV drug users are a huge risk group for AIDS, in part because social programs like needle exchanges are severely limited, because Americans are not interested in providing intervention for preventable diseases which are deemed to be the fault of reckless or morally unacceptable behavior).

Fibromyalgia is, I think, another great example of how Americans cannot deal with medical conditions when they cannot attribute fault or find a causative agent, bundled in with some serious sexism. Although it affects all genders, it is often assumed to be a specifically “female complaint,” and it’s laden with the double burden of being a “faker’s disease” in the eyes of the American public. Who are apparently incredibly knowledgeable about medical issues, especially treatment options, judging from the ever-helpful advice they provide people with all the time. When you can’t point to a causative agent of a condition, people are less likely to accept that the condition actually exists. Even when they are confronted with people who are obviously experiencing that condition.

Mental illness also falls into this category. Because we can’t point to something on a microscope slide, mental illness is assumed, on some level, to be fake or not real. And people with mental illness are assumed to be, in some part, responsible. They must be faking it, because the alternative explanation is that people can be sick without any clear cause, without any neat treatment or cure, and that is unacceptable.

In order to be an acceptable cause to support, a medical condition must be pure and untainted. Victims cannot in any way, shape, or form be responsible for their condition and the condition must have a clear and obvious cause. Thus, awareness campaigns and research and so forth ignore a panoply of serious medical issues, because they do not meet these criteria.

This means that numerous very serious medical issues in this country go underfunded and underaddressed. When education about issues is limited to issues which are considered blameless, people are missing out. Including people who may be at risk. When funding is limited to no-fault conditions, it means that serious issues are allowed to be ignored, and people with conditions linked with personal responsibility have a hard time getting respect, let alone treatment.

This disproportionately impacts some of the most vulnerable populations, like people of low income, who can exercise little choice when it comes to issues like medical conditions caused by occupational exposure, nutritional deficiency, and living in polluted communities.Like people with disabilities who could actually really benefit from, you know, funding for supportive programs.

The thing is that even conditions which can be clearly attributed to lifestyle choices are still intersectional in nature. Plenty of people smoke and do not get lung cancer, for example, just as plenty of people who do not smoke and do not have any other obvious risk factors in their medical histories do get lung cancer. Yet, the failure to even dedicate a little bit of time (comparatively, I am aware that there is ongoing research into lung cancer and that there are educational campaigns) to funding and awareness means that useful information about these conditions remains undiscovered or undistributed.

I was thinking about this lately during the flurry of outrage over domestic violence being listed as a preexisting condition. Domestic violence is another thing which is linked with some sort of personal fault or action on the part of victims. Where’s the outrage about numerous other things being listed as preexisting conditions? Why aren’t we angry about the fact that basically any medical issue/medical history under the Sun is considered a preexisting condition? The very idea of a preexisting condition is exclusionary and repulsive and disgusting.

It doesn’t matter how, why, when, or where the origins of a medical condition or disability lie. What matters is providing the appropriate intervention. To say this, however, is to undermine one of the cornerstones of the American belief system, which is why you so rarely hear it said in the mainstream.

Cross posted on this ain’t livin’

FWD/Forward » fibro

Recommended reading for June 8, 2010

Depending on narcotics

Ill

Who hates to hear they look great?

Where I jump in and defend pills…

It’s Your Fault: Socially Acceptable Disability and Popular Causes