Today, boys, girls, and theys, we are going to talk about a subject near and dear (NOT) to many neurodivergent/mentally ill people, the doctor and medication dances, and I’ll just warn you now, this gets long, because I can’t talk about one without talking about the other, and the length is partially representative of the arduous task of getting your mental health taken care of in America. And the dance is different for everyone. Some people get super-lucky the first time they see a psych care practitioner (note I did not say doctor, we’ll get to that) and get the right meds the first time which fixes their problem, and they eventually go off back into their life, happy and relieved that Western medicine had the right key to fit whatever strange lock was trapping their brain. My kid got lucky right out of the gate. BOOM! Bit of Zoloft, bit of hydroxyzine for anxiety, and he’s all good.
Regrettably, many, if not most MI/ND people are NOT this lucky, and the dances they have to suffer through are anywhere from comical to deadly. In order to find the right medication, or to determine if one, or more, is even necessary, first you have to identify the symptoms, a necessary and useful process that may or may not lead to another process that can be more harmful than helpful: labeling.
I’m a great example of how labeling utterly breaks down, because I show symptoms of a fairly wide variety of mental illnesses, yet do not show enough symptoms from any one given disorder or illness to properly “qualify” for that label, regardless of how severe my existing symptoms may be. Still, because I suffer from “mania”, which is itself a label that can mean many things (mania does not just mean “up”), I tend to get slapped with the label “bipolar” because currently, mania is only associated with bipolar disorder, yet another label that does not do near enough justice to the reality of the disorder and that in my case is woefully inadequate and misleading, but that’s another post.
Still, many if not most mental health practitioners simply cannot wrap their heads around a potential patient unless they can cram them into a box with a label on it they can understand. One of the many fearful conversations that I have in my head is with some future mental health care practitioner that can’t see past my labels, or lack thereof, and wants me to take drugs I don’t need because they make all of their medical decisions on the basis of those labels. I know for a fact this will happen someday, as my current shrink will only be in practice for another few years before he retires, and unless he’s able to refer me and the rest of his patients to a mental health care practitioner that thinks and operates the way he does, yeah, eventually I’m going to come up against some closed-minded jerk who takes one look at my chart and listens to whatever problem I’m having and decides the only recourse for me is MORE PILLS! Which may or may not be the right decision.
And that is pretty much the state of mental health care in America, as well as Britain if her bloggers are to be believed, where all of the practitioners are walking around carrying hammers and all they can see is a world full of nails. Sure, there’s therapy: nice, exploitatively priced therapy, but if you get struck with a mental illness, I guarantee you that your first stop is very likely going to be a GP’s office, who will either prescribe you medicines he doesn’t understand, like one did to me way back when, or will do absolutely nothing for you and send you to a psychiatrist, a process that can take months and months in America, for a variety of reasons.
God help you if you somehow wind up in the ER as a result of your illness, which may or may not be properly identified yet, in which case you were probably taken there by the cops and are, as a result, extremely upset to put it very mildly. ER people and the police are so horribly and inadequately prepared for the presence of a MI/ND person in crisis that the tendency is to treat them in some pretty awful ways, because nothing brings out a person’s judgments and prejudices like the mentally ill, especially if they’re actively in crisis. It’s pretty sickening to watch a medical professional essentially spew verbal diarrhea at a mentally ill person because of their deep-seated assumptions, stereotypes, fears, prejudices, and ignorance they have regarding the mentally ill, and they will use all of those tools of hate to do almost everything BUT what is necessary to help the person in crisis. I don’t pray, but in this instance, that is the only word I can use to express my desire NEVER to wind up in the ER. Dear Goddess, anywhere but there.
Notice that in this little tale I’m telling, you’ve now been to both a GP’s office as well as the ER, and you STILL don’t have the right meds, if any at all. People, this is not uncommon! You’ve got to remember that we live in a country where, in certain places, a mental hospital will NOT admit you until AFTER you have attempted suicide. Let that sink in for a minute. That’s like a group of lifeguards standing around and actively watching a person struggle and be on the verge of drowning, yet they stand there and do nothing, even when other people are like “hey, you’re a lifeguard and that person is drowning, do something!” Welcome to mental health care in America.
Fortunately I did not wind up on that road to the ER, although I did have to go through a GP briefly before finding my shrink/psychiatrist/etc. I have a hard time labeling him because, well, he isn’t a doctor, he’s a nurse with advanced prescriptive privileges (remember at the beginning when I mentioned your mental healthcare practitioner may not be a doctor?). And that’s pretty common in the mental health world because of the gross shortage of psychiatrists and other mental health care practitioners that have the ability, training, and seniority to act as supervisors to the rest of the practitioners, who can be from a wide variety of health backgrounds, not all of them mental health-based. Indeed, some people in charge of MI/ND people’s prescriptions have ZERO mental health training at all.
Congratulations! You have found a psychiatrist or other appropriate mental healthcare practitioner, AND they have an appointment available within a reasonable time frame (remember, you may or may not still be walking around with untreated mental illness and may or may not be in crisis), AND you can afford them (average initial visit is at least $200 or more and are sometimes only available when you buy 3 or more appointments at a time), AND you can get time off work to go to the appointment (I’ll have to make another post about the absolutely disgusting state of affairs that exists between employers and their MI/ND workers), AND, AND, AND…
There are a lot of “ands” that go with finding a psychiatrist, or any mental healthcare practitioner for that matter. If you happen to have health insurance, chances are that’s not going to help you since the insurance companies consider mental health to be one of their biggest profit drains, so they do anything and everything legally possible to deny coverage to their customers, and what they do offer is often paltry and meager, and hiding behind thousands of dollars worth of deductibles and copays. Gosh, it’s almost like they’d rather we just die and go away! (satirenotsatire)
Let’s assume your path was like mine, which compared to many people’s, was relatively trouble-free, heavy emphasis on “relatively”. It was still a rat’s maze I had to navigate while being in active crisis, followed by being relatively okay mentally but suffering from side effects from what I had been given. My path took me through my city’s Psychiatric Emergency Services, which is pretty much the very last stop on the crazy train where I live: it’s where you go when you don’t need an ER but are suffering and have no money, no doctor, no insurance, and NO TIME to navigate the rat’s maze without immediate help. I got there around 11am and by 5pm, had been seen by three people who all tried valiantly to listen to me through my sobs, and after about 10 minutes with each of them, received the label “bipolar” along with scrips for lithium and trazodone, for sleep. Apparently this relatively brief six-hour journey through the layers of PES is practically record-breaking, according to those I’ve talked to. Many people, some much sicker than I was, have to return to PES multiple times to get a diagnosis and a scrip, which they then have to find money to pay for.
As an aside, both Planned Parenthood and PES poo-poohed the idea that my crisis had anything to do with the birth control pills I had been taking, something I still take issue with, because I know for a fact that my mental health is directly affected by my hormones, a statement that seems ridiculously obvious to most women but that both the women’s healthcare and the psychological communities seem to have trouble with, and instead play “hot potato” with the causes of some women’s mental health problems. But that’s a separate problem that deserves its own blog post.
My next stop after PES was a GP’s office to maintain my scrips until such time as I could find a psychiatrist. They bumped up my trazodone dose because it wasn’t doing as well as it should have been at helping me sleep, and I finagled some Ativan out of the doctor because I said I was feeling…something that I couldn’t put a finger on, but we both agreed an anti-anxiety agent was probably called for.
At home, I jumped into the convoluted waters of the internet to find a psychiatrist. I really don’t remember how I ran across my shrink, but it didn’t take very long or very many other shrink profiles before I ran across his, and whether it was his kind yet unusual face that was showing on his website, or his credentials, or what, I decided he was the guy, and I made an appointment, which was blessedly available within the next month or so. That’ll be $220 please and $100 for each half hour thereafter.
For the most part, this has been a good match. My shrink is incredibly open-minded and willing to pursue non-conventional approaches to mental health treatment while still largely adhering to the pharmaceutical bottom line, so he’s firmly rooted in the science without being bound and restricted by it, a trap so many other mental healthcare practitioners fall into. On the other hand, my shrink has a nasty tendency to just grab whatever the latest thing is that happens to be in his sample cabinet and say “here, give this a try!”
I have experience both sides of this coin’s potential. Once he did this, and I wound up taking Saphris, a not-much-used antipsychotic that has the worst taste you have ever experienced. I promise, whatever you’ve eaten and hated, Saphris is worse. I’ve never eaten durian fruit, but I bet Saphris would win out. Fortunately, the drug’s maker took pity on us and created a black cherry flavor, which tastes nothing like black cherry but at least does not taste like the deep-fried ass that is unflavored Saphris. And luckily for me, Saphris worked really goddamned well.
Unfortunately, it was $350 a month. Surprise! You may indeed find the right doctor/whatever, get the right diagnosis based on your symptoms, and get prescribed the right meds, but whether or not you can afford them is an entirely different story and it’s a huge stumbling block that leaves people either unmedicated/untreated, or having to take much cheaper drugs that are not as effective and have terrible side effects, like Haldol, one of the oldest psych drugs around that also has a terrible long-term profile, yet it remains one of the first things a hospital will try to cram down your throat if you’re unlucky enough to wind up in one of them, because it’s cheap, and that is the unfortunate bottom line for most mental hospitals.
Once again, I got lucky and qualified for the drug company’s patient assistance program, something most drug companies have to help patients who need their drugs but cannot afford them. The financial guidelines for these programs are surprisingly generous, depending on the company, so I was able to score a whole free year of Saphris, saving me thousands of dollars. Unfortunately, America is increasingly a place of people with what appear to be high salaries, sometimes well into the six-figures, and they still cannot afford the drugs they are prescribed and yet no longer qualify for assistance. At some point, the Saphris began giving me full arm-and-torso twitches, so I had to stop taking it. My shrink gave me samples of Latuda along with a prescription. You want to know how much a month of Latuda cost last time I checked? ONE THOUSAND DOLLARS, and that was at the cheapest pharmacy in town. 30 little tablets. You do the math.
The other notable time my shrink just grabbed what was convenient out of his sample cabinet happened very recently when I had my breakdown at the end of May, and this is a prime example of a mentally ill/neurodivergent person going through something that appears from the outside to be a potentially life-threatening crisis, but that may actually be a necessary process that will yield a lot of positive mental health results. And this is super tricky area, I admit, because while someone in that state of mind may indeed be a potential danger to themselves or even other people, that danger can be mitigated with supervision rather than medication. For example, at one point during my breakdown, I remember telling my husband to keep me away from sharp things. I was not suicidal, I did not have any desire whatsoever to die or to harm myself, nor was I compelled to seek out sharp things, but my inner guiding Voice was still in good operation despite the rest of my brain’s discombobulation and it just piped up and said “keep away from sharp things”. So we did, for whatever reason, just in case. No big deal.
The story of my ordeal with pharmaceuticals during and after my breakdown can be found here at the blog post Week From Hell, as well as previous blog posts. TL;DR: I should have been left the fuck alone to recover and heal at my own pace (which I was doing, albeit slowly) something modern psychology/psychiatry is extremely reluctant to do for a variety of reasons, and thus I was put on a drug that was a) not necessary and b) did the exact opposite of what it was supposed to do, and in the process disrupted a very delicate personal transformation that may never fully recover from essentially being hit by a pharmaceutical truck. Nah, I’m not bitter, why do you ask? *scowls*
So yeah, like many people, I have a love/hate relationship with my shrink and I basically consider him a necessary evil: somebody has to refill my scrips. Fortunately, most of the time he’s open and flexible and willing to accommodate my wishes as to what I will and will not take. However, as Week From Hell illustrates, even he sometimes seems to pretend to listen to me and then goes ahead and prescribes whatever he wants to anyway. Which is fine, he can’t MAKE me take anything, and we’ll keep circling back to what I feel I need until he either caves or I have to find a new shrink.
At the moment, the medication dance is manifesting for me in the form of trying to figure out the balance between my body and brain being “up” enough to enjoy life and all of its pleasures, and being “down” enough so that my brain isn’t running at a high enough speed that it becomes a severe distraction that disrupts my life. I am not currently mentally depressed, but parts of my body are, most notably my libido, something I had actually recaptured before the Vraylar hit me like a fucking board, and yes, part of me worries it will never come back. As such, I will be writing to my shrink and all but demanding a prescription for an antidepressant that is well-known for re-establishing people’s libidos, or at the very least not destroying them. I already know what he’s going to say, though: “but, but, mania danger!” To which I will say, “dude, I have no history of that problem with this drug, and we’ll cross that bridge if and when we get to it, but RIGHT HERE RIGHT NOW this is a very real problem and I’m pretty damn sure this drug will help if not fix it. Furthermore, it is MY business and MY decision as to what mental health and drug effects I am and am not willing to put up with, NOT YOURS.”
On the other end of the spectrum, I’m having to use Seroquel, which I refer to as Mjolnir (Thor’s Hammer) because of its potential to fairly rapidly shut or slow down my mental processes either a) during the day if my brain gets out of control and b) at night so I can go to sleep. Unfortunately, my body seems to be adapting to the doses of Seroquel it’s been getting fairly rapidly, to such an extent that the dose that put me into a deep sleep for six straight hours two weeks ago is now woefully insufficient, and I’ve had to spike my nighttime dose from 50mg to 250mg. Plus, I still only get anywhere from 4-6 hours of sleep a night, which must be okay with the rest of my brain and body because I’m not groggy all day or otherwise feel sleep-deprived. Still, it would be nice to get back to sleeping 8 hours a night, something that has admittedly not happened since around January (see Swimming In Glue).
And that’s my particular dance. Up, but not too up, yet down, but not too down. Dosages of the up and down drugs will likely have to be continually adjusted to compensate for my inherently changing brain, outside life circumstances, and the fact that, as I’ve already noted about the Seroquel, dosage effectiveness can change over time or just stop working, for a whole raft of reasons that will drive you nuts trying to figure out. All you can do in such an instance is try another drug, which is, quite frankly, a crapshoot. An unfortunate truth that way too many mental healthcare practitioners refuse to even acknowledge, let alone actively deal with, is that psych meds work in very general ways that often do nothing to address the very specific nature of mentally ill patients’ problems and lives, not to mention the awful and sometimes deadly side effects that so many people suffer from (the stuff I finally found out about Vraylar, the antipsychotic my shrink put me on, were eye-popping and made me say “oh HELL no”). It’s getting a little better, what with the advent of things like genetic blood tests that will tell you which antidepressants are most likely to work on you and at what levels. That’s still only addressing a fairly small segment of the total MI/ND community, the ones who can afford the test, that is, and even then, sometimes all the test can do is narrow the list of potential drugs that might help, and then you’re back to the crapshoot, though it’s admittedly a lot shorter now.
I will save my opinionated review of the general psychological community of therapists, social workers, counselors, and other non-medical healthcare practitioners for another time, because that’s just as awful a ball of wax as dealing with medications is. Preview: I spent two years going through seven therapists in an ultimately fruitless effort to find a therapist that matched up with me and bailed on the entire process when the last one essentially gaslit me and said I was being “resistant” whenever I didn’t agree with her assessment of me. Again, not uncommon, unfortunately. There are a LOT of shitty therapists out there.
My story is a NICE one. The internet is full of forums of people locked in a constant struggle for autonomy and dominance between their drugs and their doctors and other mental healthcare practitioners. For far too many professionals, they automatically see MI/ND people as being incapable of rationality, and therefore incapable of properly evaluating both their mental states as well as their drugs and how they’re being affected by them. So when people complain about side effects or ineffectiveness or any number of other completely valid observations, they are routinely dismissed and told to just keep taking the drugs they’ve been given, and if they persist in complaining, they are gaslit and told “if you don’t like it, go find another doctor”, which spits them back out into the expensive rat maze of navigating the psychiatric community, which is highly likely to just parrot the same bullshit they were trying to escape in the first place.
On the flipside from people who are obviously suffering from severe MI/ND issues are people who are suffering on the inside and are really good at putting on a brave face. They are intelligent and articulate, well-educated and hold “good” jobs, and are on the whole considered to be the paradigm of mental health since their lives seem to be functional. So when they go to their doctors, they are routinely disbelieved and told really dumb things like “you’re too smart to self-harm” (actual words spoken to a woman with clear indications of self-harm by her GP) or “you’re too articulate to have mental illness” (spoken to a suicidal young man who managed to get admitted to a psych ward only to be dismissed by the attending doctor).
I am not anti-psychiatry: I need medicine, in various forms and strengths, to maintain balance, as do millions of people. But as I think Swimming In Glue I believe illustrates, as does Week From Hell, having the RIGHT medicine is absolutely critical, and there is a very real risk of making someone worse than they already were by the non-judicious application of psych meds. While experiences like mine are not necessarily common, they are not UNcommon, either, as is evidenced by the many stories I have read in some of the MI/ND online communities I am a member of. Indeed, most MI/ND people who have to take meds have at least one if not more stories of trying a drug only to have things happen to them that ranged from annoying to life-threatening.
I’m off to write my “okay man, this has gone on long enough, time for something to change” letter to my shrink. He’ll either argue with me, or I’ll be able to send my husband to the pharmacy to pick up a new scrip at the end of the day. Here’s to hoping for the latter.
For another really powerful perspective on “the mental health conversation”, please read this recent article from The Guardian. Yes, it and the author are British, but trust me, we have the same problems here that they do there, sometimes worse.