I had it bad this past week. Probably a bit overworked towards the end of the semester. Monday morning, when I looked in the bathroom mirror, my face looked completely skewed, like a Picasso painting. My first impulse was that I should paint it into a straighter shape with make-up. Then I thought: no, I should go about this face problem rationally. I should double-check what it looks like in other devices. I turned my phone to mirror mode and looked, and it was normal on the little phone screen. Then I turned on a Zoom meeting for one at the computer, and it was normal on Zoom as well. Only in the mirror did my face look fucked up. So I thought to myself: it's just a mirror illusion. Maybe stress-induced.
And then the week followed. For various reasons, I decided to still go to work even though I didn't do much. I had other bad experiences. I pulled out all the tricks in my bag to handle them (stuff I've written and published about, and then some). It was pretty bad, but now I'm much better. No big breakdown in the end, no disaster, I pulled through.
(I'm pretty active on social media, so maybe someone reading this thinks "huh, I've been following her all along and I had no idea!" Well, I don't like talking publicly about having it bad as it happens - afterwards is a different matter. If I talk about it as it happens I worry that people might feel sorry for me, and their sorry will make me feel sorry for myself and it's all gonna go downhill from there. "You become the way they see you" as Lovisa frequently thinks to herself in my upcoming novel and oh look how smoothly this transitioned into book promotion! Coghweel Souls in March 2025! Ok, back to the blog post topic.)
I pulled through this time, but after a week like this, it's still natural to think about medication. I quit my meds in 2018, but I've always said that if I absolutely need to one day, I'll get back on Haldol.
People can be weird about Haldol. It's got this reputation of being an extremely strong and dangerous drug. Some people have asked me why on earth I've been given that terrible old drug instead of some of the nice new ones. On the flipside, a woman I met at a party and talked psych experiences with, said "wow, Haldol, that's the heavy stuff! That's the real deal! They only give me these new weak-ass meds, none of which works, how did you get your doc to prescribe Haldol?"
But the whole "Haldol was so bad and extreme and the new drugs are so much nicer" is mostly hype from the companies making the new drugs. At the end of the day, different people have different reactions to different drugs. Haldol worked best for me and that's why I was on it.
It worked quite well for many years. For several decades, I was on it for much of the time, but not all the time. Occasionally, I would stupid-quit, because I felt good and thought I was cured. Sometimes I'd be alright for a pretty long time after, but then some stressful even would happen and set me off, and I'd be back in the psych system and back on the pills. In hindsight, maybe these stupid-quits had some benefit, though? Maybe they postponed the point at which Haldol just didn't work anymore, giving me only side effects but hardly any desired effect.
I hope that if I really need to get back on it one day, my brain will have rebooted after all the years off meds, and it's gonna work again. I don't think there's any actual science on this. I've asked a few psychiatrists I know through work and their educated guess or professional intuition or whatever you wanna call it is that it's probably gonna work again.
However, I'd prefer to stay off it. And it's important to me that people understand that this is not because of "internalized stigma".
"Internalized stigma" is a thing, sure. But I don't think that I have ever suffered from internalized medication stigma. Any stigma I've internalized have been directed at the madness itself, not the medications used to repress it. When I stupid-quit I was highly motivated to think that I wasn't mad, not that I'd be able to manage my madness without meds. These are different things. I definitely had a big chunk of internalized madness stigma, but it was very helpful to talk it out in therapy in 2019. (I went to therapy for my own money. Searched and searched until I found a place where they offered something other than just "CBT" and "job training". I contacted them and said I don't need fucking CBT, I need some serious fucking Freud shit! At the end of the day, I'm not sure if we did any serious fucking Freud shit, but we sure did more than CBT exercises, and it was great for me.)
Stigma against the antipsychotic pills rather than the psychotic condition does exist in antipsychiatry/critical psychiatry spaces. At their most generous, these people will say something like "I don't judge anyone for doing drugs to feel better, regardless of whether they drink, smoke weed, take psych drugs or something else". At their least generous, they will talk of psych drugs as literal poison and people who willingly poison themselves as completely duped. But among regular folks, these views are, in my experience, rare. Regular folks may think that people with common diagnoses like depression and ADHD should just pull themselves together and replace their pills with yoga or something, but psychotics are a different matter, they're bona fide crazy and should absolutely take their meds so they don't become homeless or homicidal axe murderers or both.
Still, anti-pill views are real, and with common conditions like depression or ADHD, they seem quite common. So unsurprisingly, there's also a counter reaction and people who oppose the stigma. That's good, taking pills shouldn't be stigmatized, but sometimes, the anti-stigma people see stigma and internalized stigma everywhere. And that's what I'm gonna talk about in the rest of the post. People can be reluctant to go on pills for perfectly understandable reasons. It's not all "internalized stigma".
First, there's the obvious case of side effects. Towards the end, Haldol gave me on-off slurred speech because I lost control of my tongue, and visible facial ticks. Especially the tongue thing was really bad. But suppose that my brain really has rebooted, and if I went back on them, it would be like it was before, when they worked. Back then, I had pretty mild side effects. Dry mouth, but I retained good teeth in spite of that issue. I'm more worried about returning to a state of low creativity and being less smart and fast-thinking than I am now. Mind you, I was still able to work full-time as a scholar, I was in no way zombified by the pills. Still, looking back, comparing myself then to the way I am now - it looks like a pretty high price to pay for peace of mind. It might be tempting to think that psychosis is a mental health matter and therefore intrinsically more important than things like creativity or smarts, which are just little luxury flourishes on top or something. But my mind is one, it's not divided into the health foundation and the capacity flourishes. There may come a time when I think going back on pills is worth it all things considered, but it would take a lot.
Second, I don't want to depend on pills. And this is where some people really prick their ears and go "did I hear someone voice their internalized stigma?" In particular, I've seen a few different people, as far as I can tell wholly independent of each other, make a comparison with food here. If you don't feel bad about depending on food, but you do feel bad about depending on pills, this goes to show that you're guilty of internalized stigma! You should get over it already and take your pills just like you eat your food.
First a word of why I would depend on the pills if I went back on them: In theory, it might seem like I'd be maximally protected against any looming psychotic breakdown if I were to combine pills with all my self-invented coping mechanisms that I've talked and published about. In practice, that's unlikely. I could retain all the epistemological frameworks I've developed to prop up this flimsy world of mine and make it feel sturdier, but lots of mental actions I perform - like deliberately dissociating in quite specific ways, or conversing with helpful voices - would likely be rendered hard or impossible when on pills. Moreover, in psych treatment, the pills tend to be framed as your number one crutch and anything else as just a complement. Hard not to fall into that way of thinking, if that's how clinicians constantly frame things.
So, I would depend on the pills if I got back on them. And it's different from depending on food.
I feel fine depending on food because food just works for me. I eat some food, and I get nutrition and energy from it. It works.I also felt fine being on Haldol back when Haldol just worked.
However, when I first became a psych patient, I had to go through a trial-and-error process with a bunch of different pills before we found something that worked (very common experience). That trial-and-error process was extremely frustrating. Doc prescribes a pill. You take the pill. You wait to see if something happens. It doesn't! Too bad. Doc prescribes another pill. You take the pill. Wait to see if something happens. It doesn't, not with this one either! Too bad. Etc.
Finally, we struck gold with Haldol. As I said above, it worked well for many years. But when it stopped working, that was also frustrating and frightening - will my life just fall apart now?
One thing that's particularly frustrating is how passive you are in relation to the pills. If you're trying out various mental tricks to help you deal with shit, you're actively doing something, you're performing these mental actions. If something doesn't immediately work, you can try doing it a little differently, try harder at it, and so on. With the pills, the only thing you actually do is swallowing. After that, you have no control over what happens. Stomach acid dissolves the pill, the little chemicals go out in your blood stream, past the blood-brain barrier, attach themselves to little receptors up there - or, at least that's what's supposed to happen. Whether it does, isn't up to you. It works, or it doesn't work. If it works, that's great. If it doesn't, you can only lament this fact, and maybe go back to the trial-and-error process, or adding more pills, and hope that they will do what they're supposed to do, once again just hoping.
And yes, eating food has the same passive, non-controlled element to it. I can't affect what happens with the food once I've swallowed it (at least not in a big way - maybe I'll get better digestion if I take it easy after a meal, but I can't do anything major about it). This is no problem to me because it just works. However, if it didn't just work, then it would be a problem.
Imagine that I develop Type 1 Diabetes. Extremely unexpected at my age, but imagine it happens. I notice that food doesn't work anymore. My body is supposed to break down the food and extract energy from it, but now it doesn't anymore. I eat and eat, and yet I become increasingly fatigued and emaciated. Let's make the thought experiment even worse! It's not diabetes, so insulin doesn't help. It's similar symptoms, but there's nothing the doctors can do for me. My body is supposed to get energy from food, but the system doesn't work anymore, and it's nothing I can do about that - I can hope that things get back online, but as of now, I can only helplessly watch as all the food I stuff in my mouth goes straight through without doing anything for me.
This would be a serious problem! Not because of "internalized stigma", not because I have an attitude problem around food, but because food doesn't work for me anymore and I'm helpless to do anything about it.
Similarly, it's a real, tangible problem - not just internalized stigma or a bad attitude or whatever - to take pills that just don't work for you. One might argue that feelings of helplessness and despair don't make the situation any better, so you should still try to get over them. Perhaps (though even this can easily veer into problematic toxic positivity territory). But these feelings would nevertheless be caused by quite tangible problems.
Haldol stopped working for me once. If I went back on it, I would be acutely aware of the fact that it happened once and might happen again. I could only hope that it wouldn't happen again, but there would be nothing I could do to prevent it - when a previously effective medication stops working, it's presumably because of physical, neurological changes in the brain (there's some science published on this, though AFAIK, lots of uncertainties remain), and I have no control over whether my brain will grow extra dopamine receptors or similar. Real problem right there. Not just "internalized stigma".
Third, dependency makes you vulnerable. It makes your situation precarious. And yes, sure, vulnerability is part of the human condition and all that, but I still don't want to take on extra precariousness if it's at all possible to avoid.
Even if the pills work for you, they can only help you if you get them. But access to prescription medication has become far less reliable over the years. This is because of political problems, of course. We should fight for political change. But in the meanwhile, this is a real problem for people on meds, and a rational reason to try and do without if you can do without even if it's hard sometimes.
I don't worry about being dependent on food because I can reliably access food. Of course, this isn't a privilege that everyone has. Insofar as on-off-starving people (people living with "food insecurity", to use the established euphemism) don't think of themselves as problematically dependent on food, it's probably because everyone needs to eat. One might lament depending on pills that may or may not be available next week, next month, and so on, because one is surrounded by people who don't have to worry about this, but everyone must eat.
However, imagine that breatharianism was a real thing. There are these mumbo-jumbo gurus who claim that they don't need to eat, they can survive on just air and sunshine or what-not. Imagine this was a real skill that some people developed; maybe there were quite a lot of breatharians around. In this hypothetical scenario, I imagine lots of poor and on-off starving people, who tried to go breatharian but couldn't for some reason, would envy those who could. And we don't need to posit an internalized eating stigma to explain why; breatharians' lives would simply be less precarious, they'd have one less serious problem to worry about. Even if the right thing to do is to fight for political change rather than individualize the problem and do breathing exercises for all, someone who could develop the breatharian skill might be rational to do so. If they're gonna get politically active, it will be easier if they're not simultaneously starving. In any case, no need to appeal to internalized stigma over food to explain what's going on here.
To sum up: Internalized stigma is a thing. It's worth discussing. But in my experience, it gets over-used. Suggesting that there are no real problems associated with being on pills, only attitude problems and internalized stigma, is actually not so different from saying that mental problems aren't real problems, people just need to get their shit together and improve their attitude.
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