Category Archives: medical practice

SSRIs, Violence, Walking, and Dogs

blaming, medical practice, mental health, policy, shaming, violence

Recently a link was making the rounds on Tumblr about how SSRI anti-depressants caused violent and homicidal reactions in people (h/t to the lovely Cara for making sure we saw it). I was largely ignoring it because, frankly, there’s a lot of unproductive discussions about whether SSRIs, or anti-depressants in general, or even psychotropic drugs as a whole, are teh most awesome things ever! or an evil tool of big pharma or poisoning our children or should be put in the water supply to help the population at large. And my attitude towards psych treatment, whether it be therapy or medication or anything else, is pretty similar to my attitude about religion: everyone has the right to make their own determinations about their treatment and whether they would or would not like to take psych meds, and just as my atheism doesn’t make someone else’s faith any less valid, I can support someone’s decision to reject psych meds without lessening my own right to believe they help me personally. (To extend that, I support anyone’s right and decision to pursue or not pursue any kind of treatment, to identify as they feel appropriate, and to reject the whole framework and basis of psychiatry.)

That said, I thought it might be useful to take a look at this article to discuss some of the issues I see in a lot of these arguments and discussions. The basic gist of the article is to publicize an archive of “3,500 crime related news reports linked to the use of SSRI antidepressants … Pharma and the FDA may still be agnostic about SSRIs causing violence but 700 murders, 200 murder-suicides and 47 postpartum depression cases, including the 2006 case of Andrea Yates who drowned her five children on Effexor, don’t lie.” The article describes the site as “more of a public service than the FDA which has yet to withdraw the drugs named in the 3,500 stories–or even call them dangerous,” so the clear goal of the article is to encourage prohibition of SSRIs as a class.

That’s a pretty broad goal to be supported by such thin and unconvincing evidence – and that’s my problem with these kinds of arguments. Whenever I talk about these kinds of science articles, I often use the same phrase: “correlation does not equal causation.” This means that although two variables may be very closely associated, there’s not enough information to figure out which of them causes the other, or even if the two are related by anything more than chance and coincidence. A simple example is that everyone who orders food at McDonald’s is a human. Can we assume that if a dog walked into McDonald’s and ordered food, it would magically transform into a human because of the correlation between ordering at McDonald’s and being human? No.

To unpack this further, let’s look at the fact that a lot of people who walk in my neighborhood have dogs. I know some people who got dogs specifically in order to encourage themselves to do more walking – so the dog is influencing how often they walk. However, I also know people who do a lot of running or hiking and got a dog to keep them company on their outings – so their walking/running influenced their having a dog. So does being a person who walks outdoors make you more likely to get a dog, or does having a dog make you more likely to walk outdoors? We just do not have enough information to figure that out. This means my observations of walkers and dogs should not justify a public policy to issue dogs to every household to ensure people walk outdoors.

To extend this to the SSRI stories, there’s not enough evidence for us to determine if people who are not violent or homicidal become so when they are given SSRIs, or whether people who are already violent or homicidal are likely to be given SSRIs for treatment. And that’s a very important thing to be absolutely clear on when we’re talking about having the FDA eliminate an entire class of anti-depressants that some (including me) rely on for treatment.

There’s a couple other factors in the dog analogy that I also see at play in this SSRI story:

  • Observer bias: I think dogs are pretty cute, so when I’m out and about, I tend to notice pedestrians with dogs more than I do pedestrians without dogs. So if I see 10 pedestrians and 4 of them have dogs, I’m much more likely to notice and remember the dog people and think that the majority of pedestrians have dogs. Similarly, self described “anti-SSRI advocates” are more likely to notice and prioritize instances where SSRIs occur with violent behavior.
  • Who is observed: I happen to live two blocks from the most popular dog park in town, so people from miles away drive here in order to hike with their dogs. There are a lot of trails that don’t allow dogs and if I lived right next to one of them, I’d likely see a lot more walkers who are dogless. So I’m not looking at the entire population of walkers and dog owners when I’m observing a connection between those two characteristics – I’m looking at a population more likely to suggest to me that the two are connected. Similarly, the SSRI stories are drawn entirely from crime reporting. Stories about people who take SSRIs and do not engage in violent, homicidal, or otherwise criminal behavior are not going to be in a crime story – so the archive is looking at a subset of SSRI-takers that is more likely to confirm their perception that SSRIs cause criminal behavior.
  • Interpreting evidence to fit desired results: when growing up, I tried out the “dogs will make me walk and exercise more” argument on my parents. This is because I wanted to get a dog, and I was trying to put together any argument I could to support that conclusion – I had started with the conclusion instead of with the evidence. Some of the stories mentioned in the article make me wonder if the SSRI stories suffer from the same problem. One of the quoted stories is “Lynyrd Skynyrd harmonicist Mike Caruso’s remark that, ‘the doctor put me on Cymbalta. That turned me manic.'” To me, giving an anti-depressant to someone with undiagnosed bipolar and triggering manic behavior is a very different argument than if taking the SSRI created violent or homicidal behavior that hadn’t previously existed in the person.

In order to convince me that SSRI used caused these behaviors in people who otherwise would not display them, I would want to see a clinical study where people were observed before and after starting SSRI treatment and a control group was also monitored while not having SSRI treatment. Those kinds of scientific studies are the only way to meaningfully determine whether the two variables have any kind of causal relationship.[1] And without that data, this article does a lot more harm than good – by reinforcing existing perceptions that criminals are all mentally ill and by shaming or scaring people who take and benefit from SSRIs.

[1] I should note that requests for data and scientific studies are often used to invalidate or minimize reported personal experiences from marginalized groups, an academic privilege argument of sorts. I do and continue to credit individual experiences where SSRI treatment caused specific behaviors for that individual, but I feel very uncomfortable making blanket decisions about whether or not these drugs should be available at all, for anyone, based on third party descriptions of the experiences of others.

Does Outright Speculation Make This Disabled Feminist Angry?

autonomy, blaming, For Cereal?, intersectionality, media and pop culture, medical practice, normality, shaming, social attitudes, Uncategorized, , , , , , , , , ,

Answer: Yes.

Let’s talk about this piece-of-crap article recently published on that oh-so-“liberal” news n’ culture site, Salon.com. I’m prefacing this post with a warning for ableist language and concepts on the part of the article’s author, Rahul K. Parikh, M.D. The article begins as follows:

There was a time when a celebrity’s sudden death almost invariably meant illegal drugs…[a]nd so it seems with Brittany Murphy, the bubbly and bright actress who died of cardiac arrest at 32.

Yes, it seems. Point is, we don’t know much yet. There are other health-related issues or conditions that can lead to cardiac arrest, but is this acknowledged? Of course not! Parikh continues:

The coroner’s notes allegedly claim a pharmacopia in Murphy’s bathroom cabinet: Topamax (for seizures or migraines), methylprednisolone (a steroid), fluoxetine (an antidepressant), Klonopin (for anxiety), carbamazepine (for seizures or bipolar disorder), Ativan (for anxiety), Vicoprofen (pain reliever), propranolol (for hypertension, migraines or anxiety), Biaxin (an antibiotic), and hydrocodone (a narcotic pain reliever). Gone are the days of shameful crack pipes and empty gin bottles.

OH MY GOD, EVERYBODY PANIC.

Murphy’s medications, like those of [Heath] Ledger and Anna Nicole Smith, are on the shelves of your local drugstore, available with a simple trip to the doctor — or doctors — whom you merely need to convince that you need the stuff. Did one doctor prescribe her those meds? Did 10? We don’t yet know. But as a doctor myself, I just kept wondering (and not for the first time): What if doctors were more like librarians? Would Brittany Murphy still be alive?

Cue scary music! THE DANGER IS ON THE SHELVES OF YOUR LOCAL DRUGSTORE. Nevermind that people with chronic pain conditions and disabilities have to jump through numerous, often ridiculous hoops just to get, say, a month’s supply of medications that help them function and/or live life to the fullest extent possible. As one of these people, I am of the opinion that Parikh is being rather disingenuous here; these drugs, at least for us “average” folk with chronic pain issues, are usually not easy to obtain.

After nattering about how the medical field should follow the example of public libraries when it comes to monitoring people and their books meds, he continues:

One of the many negative consequences of such fragmentation is how ridiculously easy it can be to get drugs. Most doctors know patients who have desperately angled to get a prescription they don’t need, usually highly addictive pain medicines like Percocet or OxyContin. This is what we call “doctor shopping,” hopping from one physician to the next until they find someone willing to write a script. When the supply dries up, they go to another doctor, and then another. One 53-year-old man in California visited 183 doctors and 47 pharmacies in one year to support his addiction to painkillers.

Hey, nice use of anecdata there! What on earth does one 53 year-old guy in California have to do with Brittany Murphy’s situation? As for “most doctors” knowing a patient who has “angled” for meds they “don’t need” (who makes that judgement, I wonder?): cry me a goddamn river. The endless Helen Lovejoy-gasping about ADDICTION!!1 in fact makes it incredibly hard for some of us who need these medications to obtain them, and no amount of 1984-esque War is Peace anecdata–from someone, no less, who is supposed to help people in pain as part of his chosen occupation–is going to change that.

In short, the experiences of people with chronic pain are going be different than those of an able-bodied doctor, but nowhere is this acknowledged in this article–nor is it mentioned in many larger conversations about  painkillers and (possible) ADDICTION!!11.

Most of us who need these medications do not have the energy to doctor-shop. I do not wish to deny that painkiller addiction is a serious problem; it is, for some. Sadly, these sorts of “conversations” on the specter of supposedly widespread PAINKILLER ADDICTION!!!1–much like those focusing on the OBESITY CRISIS!!11–tend to focus entirely too much attention on extreme cases and anecdata, leaving out those who need these medications for legitimate medical reasons, and, I might add, some of whom spend a great portion of time proving said legitimacy in order to show that they are not addicts or doctor-shoppers.

But if “preventing” ADDICTION!11 in able-bodied people via endless hand-wringing about who “really” needs these drugs versus who doesn’t is the number one priority here, that is a problem. Yet again, the needs of those who are judged by society as most “important” or productive or fitting into able-bodied society are taken seriously, and the needs of those who do not fit this mold–because they need painkillers for actual pain and are therefore bad/unproductive/just a bunch of whiners–are ignored, or worse, actively shamed and castigated for things or circumstances that they cannot control.

And, as OuyangDan pointed out so eloquently on this very blog, there are a lot of things that we don’t know about Brittany Murphy’s death. Using her death as a poorly-researched, almost totally speculative “example” of the dangers of painkiller ADDICTION!!11 is not only tasteless, but it distracts from how ridiculously the concerns about painkillers, “legitimacy” and the specter of addiction are often framed by (mostly privileged) people who do not deal with these things in their daily lives.

Less infuriating: Many of the commenters seem to agree that this article and its “speculation” went too far, which is unusual for Salon commenters, as most of them tend to exemplify the worst of privileged white “liberalism” on a regular basis (as you would expect, this includes loads of abled privilege and the anecdata to back up their uninformed opinions).

A Patient’s Guide to Lithium

accessibility, medical practice, mental health

I’ve been thinking lately about the blurred and perhaps ultimately nonexistent line between physical and mental disabilities. And how difficult it can be from the outside to understand why a certain accommodation is needed or a person could require physical accommodations for mental disabilities. And how sometimes the things that help me manage my disability can be really annoying and burdensome. And hey, I can illustrate all of those points by talking about one of my prescriptions – lithium. So please read along with this not at all official, comprehensive, or professional review of the medication!

Drug Description

Lithium is used primarily in the treatment of bipolar disorder and while it’s called a mood stabilizer, it’s more effective at controlling mania than it is depression. It’s not sufficient to control my depression, so I take some other stuff as well. I think it’s controlling my mania in that I haven’t been manic in at least 4 years or so.

Lithium carbonate is the actual compound used in the pills I take – the chemical element lithium with some carbons stuck on it, making it a salt. Lithium is pretty cool – it’s thought to have been created in the Big Bang, it’s the lightest metal and has kinds of industrial uses, including heat-resistant glass and ceramics, and it’s in batteries! It’s produced mainly in Chile and Argentina. It is also quite pretty and shiny. It was likely used as a treatment for mania beginning in the late 1800’s, but it was when Australian psychiatrist John Cade documented its effects in 1949 that usage became widespread. It was approved by the US Food & Drug Administration in 1970.

Indications and Dosage

Well, the main indication that it might be a drug for me was my wild and uncontrolled mania. I’d started on antidepressants to address my very serious depression, only to skyrocket into terrifying mania, put myself at immense risk, and end up hospitalized. At which point I was extremely interested in finding something that would prevent that from ever happening again. One would hope that doctors might be able to figure out an indication a bit earlier in the process, but hey.

Dosage has been 3 pills every day. I’ve taken thousands and thousands of them.

Clinical Pharmacology

I’m not a doctor, chemist, or pharmacist, so I’m not going to try to talk about what the drug may or may not be doing to this or that neurotransmitter or neuron reuptake process. Especially since most sources say, basically, “It is not really known how lithium works.” If you’re a pharma nerd like some people I know, you may enjoy reading some alternate theories of the effect of lithium on the brain – here’s a good place to start.

Side Effects

“Fine hand tremor, polyuria, and mild thirst may occur during initial therapy for the acute manic phase, and may persist throughout treatment. Transient and mild nausea and general discomfort may also appear during the first few days of lithium administration.”

My hands hardly shake at all anymore, but there were years where they would tremble almost all the time. I had a very hard time with fine motor skills like handwriting (or putting on eyeliner – yikes). My polyuria (lots of peeing!) is directly related to my mild thirst – it’s very rare to see me without a beverage. I make sure I have lots of liquids in the car, I smuggle something into the movie theater because I can’t go that long without drinking something. These all have or continue to require accommodation – my hand tremor meant I couldn’t take exams by hand and my signature would sometimes look a little different (which was really fun to try to explain to the bank). I have to pay the exorbitant prices for bottled water in airport terminals so I have enough to drink on planes. When going to court for work, I have had vigorous discussions with the sheriffs manning the metal detectors at courthouse doors about whether I’m allowed to bring my water bottle inside (conclusion: plastic bottles ok, aluminum reusable bottle not ok, average delay created by water bottle issue is 10 minutes every time I go to court). It is of course not at all obvious how these accommodation needs are associated with my underlying mental disability, which makes people doubt whether I “really need” these accommodations and why I could possibly have muscle issues when I have a mental illness.

“Muscle hyperirritability (including twitching), stupor, nausea, indigestion, drying and thinning of hair, psoriasis.”

I do have muscle twitches, especially my left eyelid. I do need at least 9 hours of sleep a night, but that could be my other meds or my depression rather than a side effect. Nausea and indigestions persist, but nothing as bad as when I first went on the meds and had to get up to take them exactly on time and sit out in the dorm hall at 6am eating a bowl of cereal so I would neither wake up my roommate or throw up my pills. My hair and scalp are definitely affected – I have dry flaking skin on my scalp and, in a recent development, along my eyebrows! Yay! I haven’t yet needed accommodations from work to get sufficient sleep, but often times find myself explaining to friends that while I really would like to go to such and such event on a weeknight, I have to be home and in bed by 10pm, non-negotiably. This leads them to think of me as not very fun and a bit of a fuddy duddy.

“Weight gain”

There’s definitely a significant correlation between lithium and weight gain. Blah.

Warnings and Precautions

It turns out that the therapeutic level of lithium is pretty close to the toxic level of lithium and the amount of the drug in the bloodstream has to be carefully regulated. Because lithium carbonate is a salt, it can build up in the kidneys, which means that my water and salt intake also make a difference to my lithium levels. So the drugs come with a warning to “avoid becoming overheated or dehydrated during exercise and in hot weather” and to be careful about consuming not enough or too much liquid. Once after walking up a long hill on a hot sunny day, I could feel that I’d sweat too much and was very dizzy and confused from the concentration of the drug in my system and since then have been much more careful.

Taking a dose that is so close to being toxic also means that I periodically have my blood tested to measure the levels. It’s a bit of a hassle, as it has to be done first thing in the morning without having eaten and it’s in the opposite direction from work and the parking garage there is a nightmare. And I don’t love getting stuck with a needle, though I’ve found I can avoid getting lightheaded if I just don’t look at the blood coming out. The worst part for me is the bruise I get – I bruise easily so even a clean stick leaves the inside of my elbow blue and purple. And no, jokes about how I look like a heroin user are not funny, and yes, trying to cover it up when I go to court or meet with a client can be quite a hassle. (Especially as I have a history of self-harm and thus a history of trying to cover up my arms to avoid comments, this is also a bit of a trigger for me.)

Usage in Pregnancy or Nursing

Lithium is in the US FDA Pregnancy Category D, meaning “There is positive evidence of human fetal risk based on adverse reaction data from investigational or marketing experience or studies in humans, but potential benefits may warrant use of the drug in pregnant women despite potential risks.” NAMI has a very good discussion of risks and considerations during pregnancy, including a recognition that for some women, it’s not an option to stop taking it. It does pass into breast milk and can be transferred to an infant.

I think about this a lot. Even if I weren’t worried about the risks of passing on my bipolar disorder to my child, I do not think that going off lithium for any period of time would be safe for me. While it’s possible to stay on it during pregnancy, it does create risks and is certainly a far cry from friends of mine who are eating only hand-prepared food during their pregnancies to avoid preservatives and chemical additives.

Summary

Except for a brief flirtation with Depakote years and years ago, me and lithium have been hot and heavy since the way back. And because I expect us to be together forever, I see these side effects and potential toxicity as realities that I have to accept into my life and accommodate as best I can rather than things I could choose to be without. And I’d likely put up with a whole lot more than this before I considered breaking up. I just wish people could understand us better and help me get what I need – water, blood tests, tolerance for wonky handwriting – so our relationship can work.

Mental Health Coverage Makes Economic Sense

accessibility, class issues, justice, medical practice, mental health

There are a lot of reasons to support health care reform and the inclusion of mental health treatment in that reform. I personally support it because I think health care (including mental health care) should be a basic human right of every human being and believe our government has a moral and humanitarian obligation to provide it to everyone.

But for those not convinced by that argument, there are some strong economic arguments for providing access to mental health coverage. First, evidence shows that overall health costs decrease when mental health care is covered. Second, tax dollars spent on mental health care tend to save tax dollars in other areas, including law enforcement, jails and prisons, homeless services, and emergency room visits – so spending money on mental health services saves money in other areas.

It’s clear that increased mental health coverage would result in increased usage of mental health services. A study by RAND in the 1980s found that decreased out-of-pocket costs for consumers significantly increased usage of outpatient mental health services, much more of an increase than demand for ambulatory health services. Even with this increased demand for services, though, overall costs are reduced, because an increase in mental health spending “yields concomitant decreases in total health expenditures and employee absences.” A study of an individual employer-based insurance policy found that the savings from decreasing coverage of mental health were entirely canceled out by increased physical health costs. Additionally, untreated behavioral health problems create significant costs for employers in terms of short-term disability absences. So even though increased mental health coverage would result in increased demand for and spending on mental health services, overall health coverage costs would stay the same or decrease due to the benefits of the mental health treatment. (See SAMHSA for citations)

Additionally, the effect of mental health coverage in reducing city and state expenditures on services such as law enforcement, jails, and homeless services is well established. After California expanded community mental health services through a ballot proposition, counties reported dramatically reduced use of emergency room visits for mental health issues. Transitional age youth (18-25) provided with mental health coverage achieved a 76% reduction in days homeless and a 49% reduction in days hospitalized. Adult participants achieved an 89% reduction in days spent homeless and about a 40% decrease in incarceration. These effects significantly reduce expenditures by cities and counties to treat the symptoms and consequences of untreated mental health disabilities – while at the same time allowing individuals to live their life without risk of homelessness or incarceration due to their disabilities.

Again, I would support expanded coverage of mental health services even if there were a cost associated with it. But because we can provide these services while saving money spent on physical health care and reduce the need for emergency rooms, homeless shelters, and jails to be primary mental health providers, there’s a very strong economic argument that we need to provide this coverage.

How to Be a Good Doctor

accessibility, bodies, happy posts, medical practice, mental health, normality, sexuality, social attitudes, , , , , , , ,

Update: It was pointed out, correctly, that part of this post contained a statement that made a generalization based on age. That statement has been removed and the post updated with this message. It’s not feminist, and it doesn’t belong here. I’m sorry.

I actually had a really good experience with a physician recently. Like outstanding. With a specialist even — an endocrinologist, so if anyone in the northeast Texas general area needs one, I can recommend him without hesitation. I was kind of nervous; I’d seen an endo before when I was starting my transition but stopped because he was a really huge jerk. (My GP wasn’t entirely comfortable with writing scripts for hormone replacement but has been willing to for a while now. She’s also recommended and trans- and queer-friendly.)

Accessibility was poor to okay: I could have done with a chair by the reception window while waiting for them to copy my ID and insurance card. To get from the curb cut by the reseved parking to the front door, one has to go down the sidewalk across the front of the patio to where the ramp up the patio is. At least three cars were parked so that their noses stuck out over the sidewalk. If you couldn’t squish down to 18″/46cm wide, you couldn’t get through there. The doors were all unpowered and the front doors were on the heavy side. I didn’t see Braille signs at all. There was, blessedly, no music and no TV in the waiting rooms. The exam room was freezing; fortunately for me I’m tall and the ceiling was low and I was able to close the air conditioning vent but that’s not a widely available option. There were wide spaces around the furniture in the waiting room that looked like they’d easily accommodate wheels and other assistive devices. Some of the furniture was squishy but some wasn’t and the non-squishy furniture had arms to push up with.

They got to me right about when my scheduled appointment was. They weighed me, measured my height — 202lbs/91.5kg and 5’11 3/4″ (yes, they really measured me to the quarter inch ((sheesh)) and yeah I’m that tall — people comment constantly on how nice it must be which it kind of is except when I’m trying to buy clothes: for all that they love models my height designers apparently don’t believe women don’t come my size and shop at Target)/182cm — with my boots off, and they did bring me a chair for getting them on and off without my having to ask for one.

We waited in the exam room less than ten minutes. Maybe five. The office had mailed me a new patient packet with all the usual stuff to fill out (and the usual uninclusiveness of gender- and sex-variant people on the form, sigh *tick* F). The doctor apparently had spent the five minutes reading and absorbing it because he came in and introduced himself and greeted the wife and me as Mrs. and Mrs. Brown. It felt really good because NO ONE DOES THIS even the people who know we are legally married. Holy shit. The wife explained that I had an autism spectrum disorder and was not having a good day communication-wise. Also that even though I was not talking much today I was plenty smart (which is a construction I’m unfond of) and could understand doctor jargon (this I’m fine with — it’s a skill, not a definition of a person). He told us that on Mondays he had a resident following him around and would we mind if he joined us for the exam?

I’ve had doctors ask this badly before. Often it’s with said resident already present so refusal is an explicit personal rejection and difficult for even a lot of neurotypical folks, never mind those of us with moderate to severe social anxieties. This doctor asked it with the resident on the other side of a closed door. It really actually felt like I could have said no and it would have been okay.

He liked that I had typed up a list of all my surgeries and meds, the dosages, the schedules for taking them, and what they’re for — it’s a long list, twelve prescription meds total — and expressed sympathy that I needed them all. Even though my wife was helping me communicate, he mostly spoke with and to me. Once when he was looking at his notes he missed that I was nodding in response to his question and he apologized for not watching to see my response. When he was working out what labs to order, he noticed what insurance we had and apologized that we couldn’t use the lab in his office but would have to go to the one (not far away) that our insurance company had a contract with or we’d have to pay for the lab work. A DOCTOR. I’ve never run into one that noticed this stuff before, never mind knew what to do with our insurance company.

In short he seemed to be respectful of all the ways I was different: physically impaired, neurologically variant, queer, trans, everything. And genuinely respectful, too, not in that fake-ass “I don’t see the ways people are different from me” bullshit. [Age-based generalization removed by the author.] It was a really nice part of what’s been a string of mostly crappy days.

I’d really rather not have anything endocrinologically jacked up (and given the pattern of other Stuff that has been tested for, I’m not expecting that anything will be very wrong here either). But if I have to have something like that, I’m glad I know who to go to. ‘cos expertise is one thing. Respect like this — on the first time seeing me, on one of my bad days? — is rare. I wish I could drag all the bad doctors I’ve been to and gritted my teeth through seeing to make them watch this young man do brilliantly with a patient who is admittedly not exactly the most conformative person ever and yell “See? This is how you do it! This is how you make all your patients feel like you care about them.”

Cross-posted at Impermanent Records.

Law & Order: “Dignity”, Worth, and the Medical Model of Disability

bodies, feminism, i'm right here, intersectionality, justice, medical practice, reproductive justice, social attitudes, television

As a feminist, I am pro-choice. Abortion should be safe, legal, and accessible.

As a feminist, I look at more than whether single, individual women have access to abortion. There is a much broader reproductive justice framework that must be scrutinised, critiqued and repaired so that all women have access to informed, supported reproductive choices.

Women who have been denied informed, supported reproductive choices in the past include more than the wealthy, non-disabled white women who dominate pro-choice conversations. Marginalised groups are as likely to be fighting for their right to reproduce as their right not to – people of colour, trans people, lesbians, and of course women with disabilities, who have been denied sex education and forcibly subjected to contraception and sterilisation for centuries.

To that list of marginalised groups, of people who are often denied truly informed and supported choices, we can perhaps add – people pregnant with fetuses who may have a prenatal diagnosis of a disability.

As a feminist, I believe that we can have the abortion-rights conversation without marginalising, othering, and disparaging people with disabilities. I believe we can talk about abortion within that broader framework of reproductive justice, and that we can confront the ableism that creeps into some abortion-rights conversations head-on. This takes effort; we must think clearly, write carefully, read closely.

Yes, some forced-birthers will try to appropriate our words for their own ends. We need to remember that they are responsible for their own misreadings and misrepresentations, not us. We need to not let their twisted, misogynist agendas control what we say. They must not stop us from speaking out.

Law & Order, “Dignity”

So, guess what I did today? I swallowed my intense dislike of popular TV crimeporn show Law & Order, and watched episode 20×05, “Dignity”, in which a bloke murders a doctor who provides abortion services, to “save” his daughter’s fetus, diagnosed prenatally with Ehlers Danlos syndrome.

Before we start, a little background on Ehlers Danlos syndrome (EDS). EDS is not one condition; it is a heterogeneous group of conditions caused by differences in genes coding for collagen proteins. Collagen is a key ingredient in all connective tissue, including skin and ligaments. The commonest EDS types manifest primarily as joint hypermobility or as very elastic skin. EDS often goes undiagnosed until adulthood, or completely undiagnosed throughout life.

There is a very, very rare variety of EDS called dermatosparaxis which involvs fragile, floppy skin and easy bruising; there have been ten published case reports of this variety worldwide. Within that group, the severity is still heterogeneous – check out this blog Sense and Disability, by a woman with dermatosparaxis who has studied at Oxford and backpacked through Europe.

Let’s have a look at the episode. I’m not going to go into a detailed recap; you can check one out here at All Things Law & Order: “Law & Order “Dignity” Recap & Review”. The case is a ripped-from-the-headlines story with many details closely resembling the terroristic murder of Dr George Tiller, one of a half-handful of late term abortion providers in the USA. The show adds a number of details that appear designed to showcase forced-birther ideas, such as the invented detail that the slain doctor had in the past murdered a live newborn. The murderer’s defence argument centres around the idea that he is trying to save a fetus from the abortion that his daughter has scheduled.

The fetus in question has apparently been diagnosed with Ehlers Danlos syndrome (EDS). At first, oddly, we’re told that it has “Fragile Skin Disease”, which typically refers to a completely different set of keratin-related conditions, epidermolysis bullosa. The show does not elaborate on how the EDS was supposedly detected (prenatal gene testing is not routine), or the fact that EDS is heterogeneous and that people with EDS vary widely in phenotype, or, well, any other facts, really. We just get this:

[clips, transcripts and a lot more discussion are below the cut]

Continue reading Law & Order: “Dignity”, Worth, and the Medical Model of Disability →

Depending on narcotics

blaming, bodies, language, medical practice, shaming, social attitudes, , , , , , , , , , , , , , , , , , , , , , , ,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Addicts we are, then.

A Delayed Deployment of Care

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Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

One of the most frustrating aspects of dealing with a chronic pain condition while under military care, as an active duty service member or a dependent is an inconsistency of care.  Something that I learned pretty early on is that my best bet for getting the best care is to have a regular doctor.

May I drop into a sports metaphor?

Your regular doc, or in my case, my PCM, should be the quarterback of your health care team.  Sie should be the one on the field, aware of all the other team’s members (your symptoms, labs, tests, etc.), the plays your team have available (medications, treatments, therapies you are trying/have tried), the other team members (other docs and lab techs), as well as the special teams coaches available (specialists).  The quarterback should be able to run the plays and call audibles as needed, because the quarterback presumably knows the team, is comfortable with the team and the plays, and has been doing this a while.

But if you are playing on a military team your quarterback gets traded.  A lot.  Often without you even knowing, in the dark of the night like Jon Gruden to the Buccaneers.

It isn’t unusual to call central appointments (because no matter how many times you have seen your PCM you can not just call hir up and schedule your own damned appointment directly, even if sie told you to) and ask for an appointment with CDR (Commander) Happygunns only to find out that sie has been sent out w/ the Reagan to whatever mission it is currently floating.  To call this a hiccup in care is the understatement of the year.  It can pretty much end the season before the playoffs.

This is a huge chunk of what amandaw calls the Second Shift for the Sick if you are trying to navigate your health care through the military.  Now, you have to find the time to get over to the TRICARE office to request a new PCM (which usually has to happen in person).  That takes time and spoons, and may involve some accessibility issues.  If you have a chronic condition you have to make sure that you get a medical officer (who, to my understanding, is O-5, equivalent, or above) to make sure sie is qualified to handle chronic conditions, instead of a Chief or other upper enlisted Corpsman or an lower ranking officer, which is a majority of PCMs at most MTFs.  Now, you have to call to set up a meet and greet with this new PCM, and that is going to take time because CAPT Nukeboom already has existing patients, or is new and has to fit you into the schedule.  If the appointment you were trying to make with CDR Happygunns was for a prescription refill (like, oh, something super easy to get like Vicodin or another pain medication), this means that during all of this time your quality of life is being compromised.  That prescription might mean spoons, which translates into showers or laundry or hugging family members or just being able to sit upright.  Maybe it was an appointment for much needed lab results (wait for it…).

CAPT Nukeboom isn’t going to just jump in and hit the ground running.  If we go back to the metaphor, sie is going to need time to get acquainted with the team.  Sie might even throw out the playbook and start over from scratch.  Odds dictate that CAPT Nukeboom wasn’t just going to write that Vicodin script or whatever you came for (yeah, I was kind of done w/ football too…let’s see if I can’t get a good hockey metaphor next time) anyway, you drug seeker, without really really making sure you really really need it.

Those lab result you were waiting for?  If you hadn’t gotten the results from the doctor that ordered them, and that doctor happened to be CDR Happygunns then you are going to have to go get new tests (WHEEEEE!).  Only the referring doctor can get the original results, but that’s OK, because CAPT Nukeboom wanted new labs and tests done anyway, and you haven’t been poked with something sharp in at least three months…

There is also a good chance that CAPT Nukeboom might disagree with whatever course of treatment CDR Happygunns was recommending at the time, regardless of how well it was working.  More spoons will be spent trying to reason with said new doctor who may or may not be receptive to your input.  If you are dealing with a best case scenario they are, and things speed along nicely, and you are only set back about three weeks in your care (only!).  Hopefully you can hold on without your Lyrica or your pain medication or your anti-seizure meds or your anti-depressants or whatever else you are waiting on, because you are not going to get anything until CAPT Nukeboom is satisfied that sie has fully come to understand your file.  If you are dealing with a less than best case scenario, you are going to fine yourself back in the TRICARE office begging them to let you request another new PCM.  Second verse, same as the first.

There are obvious reasons why these things happen (um, Hi, Mr. President, thanks!), but there is absolutely no reason why it needs to continue this way for people living with chronic conditions.  Modern technology means that our medical records are kept electronically as well as in hard copy back ups for all the doctors to access.  Lab work and test results are available freely to any doctor with access as your health care provider.  Notes and thoughts and memos from the countless doctors and providers…oh and all the specialists are all still there…a phone call or an email away.

A bump in your care can be enough to set you back months, and maybe even undo any progress you have made at all.  For some people I know (myself included) it can be enough to make you try to just “tough it out” and draw inward, afraid to seek medical care.

While the military medical system has many wonderful facets, including the fact that it is “free” *ahem* there are some huge flies in the ointment that need to be addressed.  With the high volume and tempo of deployments going on and the demand of medical personnel in the field so high, it might do well to actually use the military’s love of contracting civilians a little more in areas where it could be more useful.

I’m just sayin’.

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

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

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

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

Mind over body?

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

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

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

When does that turn into an illness?

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

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

Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation”

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[This post was originally posted at Hoyden About Town on April 27, 2009.]

There’s a whole industry that involves measuring the survival techniques and truths of people with CFS, then pointing the finger at them for causing their own illness with their Scientifically! Proven! personality “deficits”.

Here’s the latest product of that industry. They took 38 Belgians with CFS, all non-pregnant non-depressed women, diagnosed using CDC definitions (which are very non-specific) and attending a hospital outpatient clinic for CFS. The fact that they’re attending a hospital suggests to me that these are women with moderately severe CFS, unlikely to be mild, unlikely to be housebound.

They were compared to 42 “healthy female volunteers”, recruited “via the hospital staff”, we know not how. They then were all run through a self-administered personality questionnaire. The “controls” were matched only for age and education, not for, say, poverty.

The Discussion section is a triumph of scientific inconsistency, contradiction, and interpreting the results whichever way makes the PWCFS look the worst. I haven’t read anything this intellectually dishonest in quite a while. (Though a quick flick through the The Academy of Psychosomatic Medicine’s annals might quickly put paid to that.)

This study shows that in the eyes of the psychosomatic True Believers, no matter how you react to your illness, you are wrong.

Excerpted:

Use of the Temperament and Character Inventory (TCI) for assessment of personality in Chronic Fatigue Syndrome
Psychosomatics Vol. 50, #2, pp. 147-154
Date: March/April 2009
Elise Van Campen et al

The aim of this study was to examine the association between CFS and personality traits measured with the TCI self-report questionnaire. The main findings are that CFS patients scored higher on Harm-Avoidance and Persistence, and lower on Self-Directedness compared with healthy-controls.

The elevated Harm-Avoidance scores suggest that CFS patients tend to be more cautious, careful, fearful, insecure, or pessimistic, even in situations that do not worry other people.9

In situations that don’t worry volunteers with no illness, you mean. Sick people who have experienced over and over again trouble getting back to their car after an outing, sudden exhaustion meaning they have to lie down right away in a place they can’t lie down, pain crescendos that need immediate attention, people who have had to stop paid work and have seen their friends peel away one by one and their life savings disappear, people who have had to fight tooth and nail for disability payments and accommodations, people who scrimp every month to afford their medication: these people tend to be a bit careful in planning their activities, and overall feel a little less optimistic that life is coming up roses for them.

Continue reading Psychiatrists see reasonable adaptations to CFS, label it “cause” and “maladaptation” →