the drugs and my body
As I write this, I have been on a cocktail of psychiatric medications for some 42 months. It has always been difficult, though my tolerance for the pills ebbs and flows. I know that in documenting the effects of these drugs I will be assumed to be speaking out of self-pity. But there are the many who are like me, and there is also the great big bulk of people who do not understand.
In August of 2017 a long-gestating manic phase of my bipolar disorder bloomed into a delusional state. My paranoia and grandiosity reached full flower and I saw a world of enemies intent on destroying me, threatened by to my importance, my power. I said and did unforgivable things, things for which I was and am responsible. I made a terrible false accusation against an innocent person who I had suddenly decided was a mortal enemy. I behaved bizarrely at work; I stalked and harassed people digitally. I lost many friends and was justifiably exiled online. Eventually I threatened someone with physical harm. (In a voicemail, demonstrating my criminal genius.) They told me that if I went to the hospital right away, they might still call the cops, but they would definitely call the cops if I did not. My brother got on the next train to come rescue me and we went to the hospital.
When the dust settled my life was wreckage. I had to confront the worst kinds of accusations, those you cannot answer because they are true. I was left to try to save whatever was left to save in my life. And so after several bureaucratic misadventures securing a long-term doctor I finally found a caring and accomplished psychiatrist, the father of a friend. In my intake appointment I laid it out for him: that I had suffered from punishing depression starting in my mid-teens, that when I was 20 I had a psychotic episode and ended up in the hospital, that I had fallen off of meds within three months of starting, and that I had spent the prior 15 years on and off medication, but mostly off. We got to work figuring things out, and I got to work taking meds by choice and with true intention for the first time. For the things I had done I was left with my shame.
I became, in other words, just another patient, one of millions upon millions of people in this country in treatment for psychiatric conditions. Conventional estimates suggest that fully a fifth of American adults will seek treatment for a psychiatric condition in any given year. The CDC says that some 13% of American adults took an antidepressant between 2015 and 2018, pharmacy benefits management giant Express Scripts that 4.9% took an anti-anxiety medication in 2019, the NIH that 1.6% took an antipsychotic from 2013-2018. The number of people who live every day with these medications – and their side effects – is considerable. (Those at least are lucky enough to have a prescribing doctor; 60% of US counties do not have a single practicing psychiatrist.)
Three and a half years on, I am still working the program, and still living with the consequences. The side effects have always been the largest part of my consistent failure to stay on meds, alongside my persistent self-delusion that I am strong enough to manage my condition myself. I never intend to stop meds when I stop taking them. I just get up one morning, and I am suffering under the influence of some of the side effects, and I just… don’t take them. “I’ll take them tomorrow,” I think, and then I look up and it’s been a month. Despite my recent success in staying on meds it is still the side effects that gnaw at me, every day. It is not an exaggeration to say that they are a constant aspect of my mental life. I think about the side effects I live with every hour of every day. They’re there when I wake up in the morning and they’re there when I go to bed at night.
In this, I know I am joined by millions. And I also know that most people simply have no idea. I think the average person knows in some vague way that people with mental illness struggle under the weight of their medications, but I think the extent and depth of these problems are largely unknown. This broad cultural ignorance challenges me constantly; I have to stop myself from talking about it to strangers on the subway. And so I’m going to talk about my medications and the things they do, in hopes that some might learn a little bit more about what it’s like, for the benefit of those millions who suffer.
We might start with the weight gain, as it is impossible to pin on one drug and the most obvious side effect. Weight gain is one of the most widespread and consistent side effects of all manner of psychiatric medications and, for many, one of the major reasons to fear going on them. For me, personally, it has always been a barrier. (I was a gym rat in my prior life.) Certainly the weight gain cannot help but be apparent to people who knew me before I started on meds and see me now. The day I went to the hospital I weighed 177 pounds. Three months of meds later I weighed 235. 177 was not a healthy weight for me either, at 6’1 - when I am manic I work out like a demon and I don’t eat - but still. In those first few months my body expanded so quickly I could hardly believe it. The conventional advice for managing this side effect, diet and exercise, always felt pitiful in comparison to the power of the pills. Through a long process of trial and error I have gotten down to a fairly consistent 220 pounds. But when I slip the progress seems to be erased in a matter of days. Without constant vigilance the weight gain is relentless, unyielding. Due to signs that I have developed pre-diabetes I now take the drug Metformin, which helps regulate my blood sugar.
I know that, to some, fixating on weight gain will seem like an exercise in vanity. And yes, I miss the aesthetics of my old body. I miss feeling attractive. But the problem is deeper, more unsettling: my physical self has changed, and I do not recognize it anymore. These pills violate the sovereignty of your body; they make the basic functions of your anatomy something uncontrollable and unknowable. Huffing and puffing up the stairs and straining against the waistbands of my pants are not insurmountable challenges. But the knowledge that my body has in a very basic sense betrayed me is a deeper wound.
Other side effects are drug-dependent. For me, lithium is the basis of everything. It is the foundation of my treatment. A mood stabilizer, it is one of the most reliable and widely-prescribed psychiatric medications in the world. The pills flatten you out, trimming off the emotional highs and lows that can, for many, cause so much wreckage in their lives. An element of the periodic table, lithium cannot be patented and is thus available fairly cheaply at almost any pharmacy. The emotion-moderating effects are apparent after 3-4 weeks and those benefits make it easier to stay on the pill. Not only is the clinical evidence of its efficacy in patients clear, multiple studies have found that places with higher natural levels of lithium in the drinking water have lower rates of violent crime and suicide. This came as little surprise to me. When you have experienced bipolar mania, the shaking delirious heart-racing paranoiac acceleration of everything you are, lithium’s steady and reliable presence is as comforting as a drug can get.
But lithium has its price. It is a prime culprit in the weight gain and many struggle to remain on the drug for that reason alone. My hands shake, sometimes to the point where I can’t lift a coffee cup to my mouth, thanks to the lithium. I pee more often than a pregnant woman, maybe 10-12 times in a day. And it causes gastrointestinal distress, which is sometimes severe. This can result in nausea and pain, though thankfully this fades for me after several weeks of use. But there are other elements of this gastrointestinal distress, ones which I will not share with you for the sake of propriety. The end result is that I have to constantly worry about having immediate access to a toilet. Trips to Manhattan, notoriously short on public bathrooms, are exercises in nerves, and I have made several dicey subway rides home to Brooklyn. The drug also comes packaged with larger dangers. Lithium has what the doctors refer to as a “narrow therapeutic band,” which is to say that the drug is healing within a narrow range of blood levels, ineffective below it, and potentially very dangerous above. Long-term lithium use has also long been linked to physical problems such as kidney issues, though not without controversy.
And there is of course the basic function of lithium itself: it flattens moods effectively, and it flattens them indiscriminately. I have always been sensitive to the perception that someone being medicated for bipolar disorder must be emotionless, but, well. I mostly am. It will occasionally strike me that I should feel something in response to some turn of events; I notice the absence of emotion the way it dawns on you that you forgot to turn your music back on after answering a phone call. You fill the space where organic feelings should be with your memories of what they feel like. Emotions become thought rather than felt, understood rather than embodied. What haunts you is knowing that you don’t really know what you’re missing.
I take a couple of antidepressants. Prozac, the most famous antidepressant, is a selective serotonin reuptake inhibitor, or SSRI. These are some of the most studied psychiatric drugs, and some of the most controversial, as persistent and legitimate questions endure about whether they really do anything. Prozac too can cause weight gain. There are sexual side effects that sometimes (only sometimes) suppress any desire to have sex and that sometimes (only sometimes) prevent me from finishing when I do. I have vivid and bizarre dreams, and the literature tells me that may be the Prozac, but who can say. My other antidepressant, Wellbutrin, seems to have blessedly few side effects for me, although then again I’m never sure if it’s doing anything beyond giving me a slight kick in the morning. For others it can cause sleeplessness and headaches.
It is the antipsychotics, though, that leave me dreaming of life without meds.
Unlike some psychiatric medications, antipsychotics show neither a lack of large effect sizes in clinical trials nor the common inability of users to detect subjective effects. No one doubts that these are powerful drugs. (Trust me: if you ever receive a shot of Haldol, you’ll know.) Antipsychotics work; they fulfill their intended purpose of significantly reducing the symptoms of psychosis. Some injectable forms can resolve psychotic symptoms in a matter of minutes.
This efficacy makes the side effects seem even crueler. Because the side effects of antipsychotics are truly discouraging. They are both broad and deep, many in number and frequently debilitating in impact. There are two generations of antipsychotics, sometimes known as typical (first generation) and atypical (second generation). The former includes drugs like the famous schizophrenia treatment Thorazine, while the latter includes drugs like Risperdal and Abilify. The atypical antipsychotics have somewhat milder forms of some of the side effects, but their unintended effects remain profoundly challenging.
Like many other psychiatric drugs, they cause significant weight gain; the drug I take, Zyprexa, is notorious for causing intense hunger pangs. About a month into my treatment I found myself so voraciously hungry at all times that I scoured the internet for the experience of others, simply to see if what I was experiencing could be real. When I found a site with many personal testimonials of users suffering from similar experiences, I felt validated in a deep and odd way. Zyprexa is unusual in the depth of its hunger and weight issues, but they mostly all cause people to become fat. There is a second generation antipsychotic that is not associated with weight gain, Latuda, but it is mainly for the treatment of bipolar depression rather than bipolar mania, and anyway as it is still on patent I could never afford it even with health insurance. Antipsychotics make you drowsy; antipsychotics can make you dizzy. Some can cause debilitating gastrointestinal effects. Some who take them suffer from dangerous fluctuations in their blood pressure.
It is the cognitive side effects of antipsychotics that have come closest to breaking me and forcing me off of meds. Frequently, these cognitive effects are defined as lack of focus and impediments to short term memory. This definition is not wrong, exactly. Certainly I have suffered from those. On these drugs my attention drifts like a floater in my eye; paying consistent attention to one thing feels like trying to line up a crosshairs with a target that keeps skittering around in front of you. I have several times been in a meeting and repeated to myself “I’m paying attention, I’m paying attention” and will suddenly realize that I have been staring off into the distance while the subject of the meeting went whistling past me. I just lose time. It’s the oddest feeling, like a momentary bit of time travel. I honestly can’t remember when my attention slipped.
The memory loss feels less mysterious; it’s just that something that was in my head is suddenly and totally gone. It’s an encounter with a complete void. When I forget something now I almost never have it on the tip of my mind the way you often do. There’s just a blank space that resists any attempt to investigate it. I know that, even unmedicated, if I’m on the subway and I think of a song I want to listen to when I get home there’s a good chance I won’t remember. The difference now is that this forgetting is universal and happens before I reach the next station. I am forever trying to remember if there was something I was trying to remember. I have gotten used to clicking on my web browser to open a new tab and forgetting where I wanted to go before I navigate there.
Unfortunately, these two major side effects are both problems that tend to be defined as personality defects, as a lack of character. Paying attention and remembering are things that we are supposed to be able to make ourselves do, if we care enough. I can tell you from personal experience that, in a professional setting, an inability to stay focused in a meeting or to remember what you’ve just been told are looked on very poorly. In this association of attention with respect and engagement with virtue I feel solidarity with those with ADHD. Ideally we’d live in a society where the Americans with Disabilities Act compelled employers to extend to us the reasonable accommodation required by the law, to be forgiving of these lapses because they are legally required to be, but in practice these rights are far from guaranteed. Again, I speak from experience.
But there’s an aspect that goes beyond memory and focus, one that’s harder to explain but is omnipresent and at times debilitating. In my favorite episode of Law & Order, a character suffering from schizophrenia describes the cognitive effects of antipsychotics.
“I’m using every ounce of energy I have just to talk to you. I feel like I’m pawing through a wool blanket, I feel stiff and half a step behind everyone. It takes so much effort. I get so damn tired just holding on to reality.”
It is that sense that cognitive processes can be effortful, in the same way that physical exertion can be effortful, that frequently leaves me contemplating pouring my pills down the sink. The phenomenon is very hard to put into words. Think of the way your muscles slowly grow tired as you complete some repetitive and strenuous task. The gradual slowdown, the way your limbs turn sluggish no matter how you command them to move, is how it feels to think sometimes. I don’t mean the feeling that you get at the end of a long day of mentally rigorous tasks. I mean feeling physically tired from thinking. I mean constantly trailing behind your thoughts as you try to think them. I mean trying to swim through mud in your mind. I mean feeling like your brain has filled with lactic acid. I don’t know if this is how it feels for anyone else, but this is how it feels for me.
I used to love a good conversation. I used to do well in interviews. I used to pride myself on my lecturing skills when teaching. Now I stutter constantly, struggle to follow what’s being said, stumble forward like my shoelaces are tied together, constantly fearing humiliating myself as I push through the fog. I don’t have anything artful or poignant to say about it. I just hate what my mind has become.
And people taking antipsychotics have to worry about the idiosyncrasies and potential interaction effects of the particular drugs they take. Though similar in function and strength, all of the atypical antipsychotics have their own quirks, their own way of interacting with the brain and mind. Which means that patients in the early stages of finding the right prescription may end up on one that is a particularly bad match with their psychology, provoking debilitating cognitive issues. I’ll never take Seroquel again.
Finally there are the most troubling side effects of all. You may be familiar with the uncontrollable repetitive facial tics that are sometimes the product of antipsychotics, known as tardive dyskinesia; the syndrome is common to portrayals of the severely mentally ill in popular culture. Tardive dyskinesia is thankfully far rarer with second generation antipsychotics than with first, but it still does happen, and it is frequently permanent even following cessation of taking the drugs. Scarier still is neuroleptic malignant syndrome, a potential reaction to the pills that causes dangerous increases in body temperature and is often fatal.
The side effects of antipsychotics are sometimes treated with ancillary medications. I have a prescription for benzodiazepines to deal with the chronic restlessness and one for amphetamines to address the extreme inability to focus. Thankfully, I only need to take the Xanax rarely, not more than two or three times a month. Others need to take benzodiazepines almost daily to deal with the inability to sit down, stop their legs from shaking, and be at peace. When I still had an office job I took dextroamphetamine every workday, but much less often now. Of course, these drugs too have their side effects.
Benzodiazepines, such as Xanax, Valium, or Atavan, are notoriously addicting, but I have been very careful and have the help of a doctor who is vigilant about my use. These drugs are also famous for putting you to sleep, and I’ve learned to try and keep a clear schedule right after I take them. What I never knew about benzos until I started taking them is their potential to lower inhibitions. A reporter for the New York Times once emailed me to request an interview for a story on the interaction between Twitter and mental health. I assented, and she told me she would be in touch in the future. Weeks later, I was suffering from one of my bouts of unmanageable repetitive movement of my legs, so I took some Xanax. I proceeded to write the reporter an unhinged email in which I waxed on at length about my transgressions during my last psychotic state and my culpability for them. I did not recall that I had even written such an email until she wrote me back. She was gracious enough to say that she had already decided not to include me in her story.
The only real side effect of the amphetamines is feeling hot and jittery; I don’t take them after around 2PM so they don’t disrupt my sleep. And, if I’m being honest, I like them too much, and it’s easy to see how I could develop a dependency. Here again I have been careful and here again I benefit from an involved and accessible doctor who keeps an eye on me. Many with mental illness are dealing with overworked doctors, if they get repeated access to the same doctor at all, and could not enjoy the same level of consistent concern that get from my doctor. Anyway I have mostly avoided the urges to, I don’t know, take a bunch of speed and go to the art museum. Mostly.
Finally I have a prescription for trazodone, which is used on-label as an antidepressant but which I have handy as a sleeping pill. The Zyprexa usually knocks me out at night, but there are occasional bouts of insomnia and it’s good to have something for it. Having the trazodone is mostly strategic; if I have it I am less likely to reach for the benzos. Many good people have fallen into the habit of taking a Valium every night, only to find getting off of it a sleepless nightmare.
Fears over cessation and withdrawal are considerable in general. About 20% of people who cease antidepressant medication are afflicted with antidepressant discontinuation syndrome, which can include anxiety, headaches, flu-like symptoms, and nausea, in addition to a relapse into depression. Antipsychotic discontinuation syndrome can cause dizziness, insomnia, anxiety, restlessness, and a variety of gastrointestinal problems. I can tell you from experience that it can be like someone steadily scraping away with a screwdriver on the inside of your skull. Unlike the others, benzodiazepines are technically considered physically addicting and withdrawal symptoms can be brutal. Many face punishing insomnia, as mentioned, and a relapse into extreme anxiety is also common, as are hand tremors, muscle pain, heart palpations. Some experience seizures or even psychosis. Whether going off lithium produces withdrawal symptoms, or merely results in the relapse of the treated disorder, remains scientifically unsettled. In all cases, discontinuing the drugs safely requires tapering periods, supervised carefully by a doctor, which can last months.
As you might expect from medications with such profound downsides, the resistance against them is fierce. Since I had a public psychiatric crisis, and since I have been public about being medicated, I have heard several times from people in the anti-psychiatry movement. This is a loose constellation of citizen activists and renegade doctors who reject the biological interpretation of psychiatric disease and who are virulently opposed to psychiatric medicine, which they generally see as useless poisons. I have received perhaps a half dozen emails from them in the last three-plus years. Sometimes they are sympathetic, sometimes they are contemptuous, but they are all convinced that my medication regimen is a self-inflicted curse.
Perhaps the most visible opponent of conventional treatment - outside of Scientology - is Dr. Peter Breggin, a psychiatrist who is opposed to the use of virtually all psychiatric medicine and who has testified against the drug companies in civil trials many times. The website Mad In America is something of a hub for the anti-psychiatry community, and many online forums such as Reddit have social spaces for psychiatry skeptics, most of whom are past patients themselves and refer to themselves as survivors. I have no way of assessing the size of the anti-psychiatry movement or its trajectory, but I can say from personal experience that they are determined and they are loud.
Despite my litany of complaints, I am not one of them. The myriad controversies concerning these medications can have no relevance for my behavior, as I cannot survive another episode. If I go off the meds, I will relapse into mania or a mixed state, and when I do I will either ruin my life or end it. I am out of second chances. I have no opinions on the degree to which psychiatric illnesses are the product of psychology or physiology, other than to say that bipolar disorder is a profoundly physical condition, one I feel first in my body. Perhaps many of the critiques voiced by the anti-psychiatry movement have merit, I don’t know. I do know that I have to continue to take my medication. After 15 years of running I finally achieved the clarity of rock bottom, and I am not going back. Psychiatric medicine was the last loose strand that I could grab as my life disintegrated, and I am still holding on. And in case I haven’t said it already: though I still feel my moods move cyclically up and down, I have not been manic since I went back on the pills. They are fulfilling their function.
I am immensely lucky to have found my psychiatrist, who is an experienced healer, a skilled clinician, and a kind man. I know that I have invited criticism of him by discussing the full sweep of my medications publicly, but in fact his willingness to prescribe is one of the things that I like about him. He believes in psychiatric medications as tools to address human problems, human needs. And so do I.
The problem is that the drugs we have are, in the main, bad tools, and it is unclear if better ones are on the way. As I have said, there is a large market for psychiatric medication, but this does not mean that new drug development is assured. In 2016 the Guardian reported that funding for new psychiatric medicines had shrunk by 70% in the prior decade. Major money makers like the SSRI antidepressants went generic and revenues plummeted, even as new prescriptions rose overall. Anti-anxiety medications, while a large market, are also largely generic, and sales declined for years. (Sales have recently upticked again, perhaps because of the mental health issues related to the Covid-19 crisis.) One way or another, the gold rush days of the early SSRI market are over, and pharma companies seem to have responded by largely defunding psychiatric medicine research. The odds of a new wonder drug seem long, even one that merely replicates the efficacy of current medications while reducing side effects. And of course any such new drug that was discovered would be under patent and thus prohibitively expensive for potentially as long as 20 years. Still, there are hopes for progress, particularly in the potential therapeutic benefits of illegal drugs like psilocybin mushrooms and MDMA.
I do not spend my time dreaming of better drugs. I dream of the days when I will not take any. People often age out of bipolar disorder, though it may be another 20 years before I can live without medication. In the shorter term my doctor and I look for places where we can reduce my dosages, pay attention to what my body is telling me, and try to minimize harm. Like most people with mental illness, I am left to trudge on with deeply imperfect medicines, ones that seem to present an impossible choice between stability in my life and the quality of my life. The best thing for those of us that take them is to be understood, for others to know what treatment has cost us, what it is costing us still.