I first experienced psychiatric medication in my mid 20s, while a patient at Fulbourn (hospital, in Cambridgeshire, England). Landing there is a story for another time. After some weeks, and fervid lobbying to anybody who might listen, I was released with a load of pills and advised to attend appointments at an outpatient facility (attached to Addenbrooke’s hospital) in Cambridge, ironically close to the academic department where I was a student.
After initially resisting medication at Fulbourn, by the time I was released taking it had become routine, and by the power of inertia the routine carried over for the first few days after returning to my small room in a small ‘townhouse’ (to use the American terminology) in Cambridge. But soon enough the urge to resist resurfaced, and, resolved that “they have no right to make me to take this stuff” (which is true), the feeling that “this stuff must be destroyed” was very powerful. Something must be done.
Remember the old joke syllogism from the TV show ‘Yes, Minister’?
Premise 1: Something must be done.
Premise 2: This is something.
Conclusion: This must be done.
It turns out that the syllogism works even if you don’t really know what ‘this’ is, and thus, not knowing what ‘this’ is, but resolved to do it anyway, I hopped on my bike, a few plastic bottles of pills in my pocket. The point was to annihilate them, and involving a bicycle was just obvious. Bicycles are freedom. That’s probably why, despite poor episodic memory, my first bicycle, a decrepit tin donkey that my parents painted red and gave to me one birthday, is still clear in my mind. Freedom.
The freedom-mission took me to Newmarket, a small town famous for horse racing, but it wasn’t the right place, and I continued to Bury St. Edmunds, a larger town that I had visited with my English roommate a few times to watch rugby. But Bury St. Edmunds wasn’t it either—too many people. Moving on, after a few more hours of riding, the coast came into view. As best as I can reconstruct, it was somewhere near Felixstowe. There was a beach (by English standards, but utterly unlike the beach of my youth in Pensacola, Florida). The water was frigid, but I waded out into the North Sea (or is it the English Channel at that point?) and chucked the pills one by one into the waves.
I imagine that some people who might read this story would cheer—“He’s finally free!”—while others might cluck or cry, not (only) at the irresponsibility of disposing of medication into the sea (though it was irresponsible), but (also) at the thought of somebody unilaterally ditching his psychiatric medication—“He’s ruining his life!” (Somebody who knows a bit more about psychiatric medication might worry about the fact that I had just quit cold turkey, and they would be right to have this worry.)
Why? Why does psychiatric medication elicit such strong responses? Extreme attitudes aren’t hard to find. If you pay any attention to popular discussions of psychiatry (in western industrialized countries) you will soon encounter them. The rhetoric is often not subtle, and the arguments can quickly deteriorate to uncritical moaning, or outright flimflam. People get very worked up about psychiatric medication. Why?
My own experience with medication is a discussion for another time; suffice it to say, here, that it is not a one-sided tale—neither ‘escape from the horrors’ of psychiatric medication, nor ‘being at peace’ with it. (Both types of tale are common enough, and are certainly not being dismissed here.) The point of this post is, instead, to offer some very brief and incomplete thoughts about why people get so worked up about psychiatric medication. None of these thoughts is novel, but encounters with the kind of extreme rhetoric mentioned above suggest that people sometimes forget or ignore them. Maybe they are worth repeating out loud.
“It’s not an aspirin.” Unlike aspirin, psychiatric medications are supposed to affect one’s thinking, and more generally one’s mental experience. And they do not just ‘take away the bad stuff’. Haloperidol, for example, is frequently prescribed for hallucinations and delusions. It works for some people—it ‘damps down’ hallucinations and intrusive, delusive, ideas. It also ‘damps down’ everything else. It’s a whack on the skull packaged as a pill. (It takes about a week for the whack to happen, but even so one can’t dodge it.) People who have never been on this sort of medication seem prone to underestimate (or just fail to understand) how it can eat away at the very idea of who one even is in the first place. This effect—which, as noted, is not really a ‘side effect’, but is intimately tied to what the medications are supposed to do—is perhaps especially acute in the case of schizophrenia, where ‘self-identity’ can be very elusive already. In any case, once you start messing with people’s sense of identity, you are going to get strong reactions.
“May Cause Side Effects.” Of course there are also the side effects, both physical and psychological, and they aren’t rare or trivial. Studies of side effects can be precarious and misleading for many reasons, but just to give some vague sense: One study (Rasmussen et al. 2016) of the extrapyramidal side effects (e.g., reduced motor control and coordination) of haloperidol found that patients who start haloperidol (as their first anti-psychotic medication) have a 78% chance to experience extrapyramidal side effects by week 2. (There’s much more to the study, and there are many other side effects.) Psychiatric medications can also be addictive in some cases. And ceasing (even by tapering off) some psychiatric medications can be very precarious (and painful).
“Why do you need all those pills?” One of the hoped-for benefits of characterizing mental illness as a ‘brain disorder’ was (not implausibly) that it would reduce stigma. “It’s not their fault—it’s their brain.” It is well established, now, that this hope has not been realized. In one longitudinal study (Pescosolido et al. 2021) of American attitudes from 1996 to 2018, stigma towards most mental health conditions increased appreciably (with depression being the notable exception). Over 60% of the respondents in 2018 stated that they would not be willing to work with somebody who has schizophrenia. (Almost surely many of them do!) Even if we don’t take our medications in public, medications are a constant reminder of this public attitude, which is difficult to ignore and very demoralizing.
“I don’t need your help.” One common objection to psychiatric medication is that it is just a crutch for people who are failing to deal with ‘normal problems of living’. (This objection is dangerous not only because it is irresponsible and insensitive, but also because there is a germ of truth to it. That discussion is for another time.) Many who make this objection seem to fail to appreciate that people who have been prescribed psychiatric medications can feel exactly the same way. While some may accept the dependence that they have (or are supposed to have) on medication, it seems plausible that most resent it. In other words, psychiatric medication is bound up with general concerns (from all parties) about personal responsibility and autonomy, and it is easy to get worked up about such things.
“Caveat Emptor.” Certain actors in the pharmaceutical industry advertise and otherwise promote psychiatric medication in disgustingly irresponsible ways. It isn’t just on television. (Does anybody watch television any more?) I just did a web search on the phrase “treatments for schizophrenia”[1]. The top three results were web sites run by drug companies (though the URLs that turn up are not the names of drug companies, but nice phrases like ‘treatingschizophrenia.com’), giving fantastically over-blown impressions of the effectiveness of their product, and plenty of feel-good stories about caring for persons with schizophrenia. On one site, a ‘worksheet’ allegedly designed to help caregivers understand how to deal with episodes of acute psychosis is chock-full of information about the various forms of paliperidone sold by the company. If one doesn’t immediately see this overselling for what it is, one soon will, and the inevitable cynicism towards drug companies is likely to carry over to their products. Who is going to react positively to realizing that they are the target of aggressively misleading advertising? Who is going to think well of the product thus advertised?
To sum up: The stakes are high, with concerns ranging from one’s personal identity, to community safety, to public acceptance (or stigma), to physical health, to personal autonomy and responsibility, and more. We might all try to remember and appreciate that when the stakes are so high, reason, sensitivity, and open-mindedness can be difficult; they are achieved only though intentional and concerted effort and genuine care and respect for others.
Notes
Knowing how much drug companies profit from schizophrenia is difficult because the same drugs are used for other indications, perhaps most notably bi-polar disorder. For example, aripiprazole and quetiapine (two very profitable drugs) are sometimes used to treat schizophrenia, but other other things. (Aripiprazole is often part of a treatment plan for bipolar disorder and depression, for example, and quetiapine is often prescribed (‘off-label’) to help with sleep.)
A further note: The situation has changed a bit in recent years — the advent of long-acting (and expensive!) injectibles is making schizophrenia more ‘profitable’. It is probably no accident that the web sites that turned up in this search are all about long-acting injectibles. Nobody is hawking haloperidol pills (which cost around $15 per month). Clozapine is only slightly more expensive (and there is also the required bloodwork, although profits from bloodwork do not, one assumes, go to the drug company). Long-acting injectibles (even if the underlying drug is still haloperidol) are roughly 10x the price. And more recent medications like lumateperone (which I tried for a short while) are much more expensive (and—surprise!—much more commonly advertised), around $1500 a month.
References
Pescosolido, B., A. Halpern-Manners, L. Luo, and B. Perry (2021) “Trends in Public Stigma of Mental Illness in the US, 1996-2018,” JAMA Network Open 4(12):e2140202.
Rasmussen, S., P. Rosebush, and M. Mazurek (2016) “The Relationship Between Early Haloperidol Response and Associated Extrapyramidal Side Effects,” Journal of Clinical Psychopharmacology 37(1):8–12.