This is a composite story drawn from common experiences shared by people with schizophrenia. Names and details are illustrative.
I want to write about the year I stopped taking my antipsychotic without telling my psychiatrist. I have hesitated to write about it because I do not want to make anyone else's decision for them. But the story is common enough that I think it is worth being honest about, and the version I would have wanted to read at the time would have come from someone who had actually done it and could describe what it cost.
Why I stopped
I had been on the same antipsychotic for almost three years. By any external measure I was doing well. I was working. I had a partner. I had not been hospitalised since the year of my diagnosis. The voices, when I noticed them at all, were more like a thought than a sound.
I started to wonder if I had ever needed the medication. The narrative I built was that I had been overdiagnosed during a stressful time. That whatever had happened in my early twenties was more like a really bad reaction to stress and sleep deprivation than a chronic illness. That I was now a different person and had grown out of it. I read posts online by people who had stopped antipsychotics and were thriving. I did not read the posts by people who had stopped and relapsed, although they were there too.
I also had real reasons to want to stop. The medication had a flat-affect side effect I was tired of. I wanted to feel my own emotions more strongly. I had gained weight. I had a tremor. I wanted my body and my mind back from what I felt was a chemical layer over them.
I did not tell my psychiatrist. I should have told my psychiatrist. The conversation with her would not have been "no, you cannot." It would have been "let's talk about how, if you really want to try this, we do it as safely as possible — what dose to taper from, over what period, what early warning signs to watch for, what the plan is if things shift." I did not have that conversation. I just stopped.
The first six weeks
The first two weeks I felt nothing different. The half-life of the medication meant it was still in my system. By week three I started to feel, frankly, fantastic. My emotions were sharper. My thinking felt faster. I had energy I had not had in years. I told my partner I felt like myself again. They were cautiously happy for me.
This is the part nobody warns you about. The early period off antipsychotics often feels like recovery rather than relapse. It is part of why so many people stop and do not realise something is wrong until much further in.
The shift
Around week six I started having trouble sleeping. I attributed it to a stressful project at work. Around week eight I started noticing that strangers seemed to be looking at me more. I attributed it to my new haircut. Around week ten I had a thought, while walking to the train, that the man on the corner was someone I had been warned about. I knew, in a small distant part of my mind, that this was the kind of thought I used to have. I dismissed it.
By week twelve I was up most of the night, writing. I was not exactly delusional, in the sense that I would have failed a clinical exam. I was just operating on a slightly different system of meaning than the people around me. My partner was worried. They asked, gently, if I was still taking my medication. I lied.
The second hospitalisation of my life
I will not narrate the worst of the next two months because the details are not the point. The point is that I lost my job. I damaged my relationship in ways that took years to repair. I was hospitalised for sixteen days. I was put on a higher dose of the medication I had stopped, plus a second medication I had not been on before. I had a small bald patch above my left ear from where I had pulled hair out during one of the worst nights. My sister flew in. My parents flew in. I was 31 years old and I needed help being walked to the bathroom.
The slow re-build
I was in an intensive outpatient program for two months after discharge. It took six months to feel like myself again, by which I mean the version of me that had been doing fine before I stopped the medication. It took a year to start working again. It took longer than that to repair the relationships my behaviour had affected.
The thing that hurt most was knowing it had been preventable. The relapse was not a tragedy of fate. It was a consequence of a decision I made.
What I would do differently
If I were considering stopping medication today, I would do all of the following before I ever changed a dose:
- Talk to my psychiatrist openly. Most psychiatrists are not as rigid as patients fear. They will work with you on a careful taper if you make a thoughtful case.
- Choose the timing carefully. Not during a stressful life event. Not during a relationship transition. Not during a period of poor sleep. Stability before the experiment.
- Taper slowly. Months, not weeks. Some literature on safer discontinuation talks about 10% reductions every 4 weeks or longer. The slower the taper, the lower the relapse risk.
- Have a relapse plan written down. Specific early warning signs unique to me, and what I and my partner would do at each level. Whom to call. What dose to resume.
- Tell at least two people. Someone who lives with me and someone outside my household. They have permission to call my psychiatrist if they see early signs.
- Track sleep, mood, and a small set of psychosis symptoms daily. The graph is more honest than my memory.
What I want other people to know
I am not anti-medication, but I am also not preaching. I know people who have come off antipsychotics with their psychiatrist's guidance and have done well. I know more people who tried what I tried and ended up where I ended up. The literature suggests relapse rates after antipsychotic discontinuation are very high — typically more than 60% within a year — and that each relapse can have lasting effects.
If you are thinking about stopping, please do it with help. The wish to be free of the medication is reasonable and worth taking seriously. The way to honour it is to make a careful plan with someone whose job it is to keep you well, not to do what I did.
I am back on medication. I have been for three years. I am stable. I do not regret the want; I regret the way I went about it.
This article is for educational purposes only and is not medical advice, diagnosis, or treatment. Always consult a qualified mental health professional. If you or someone you know is in crisis, call or text 988 in the US, or your local emergency number.