This is a composite story, drawn from common experiences shared in the schizophrenia community. It does not depict a real individual.
I'm a 31-year-old woman in Albuquerque. I had my first psychotic episode at 26. I refused antipsychotic medication for the two years after that. I have been back on medication for three years now. I want to write about both the refusal and the return, because I do not regret either decision and I want to be honest about why.
Why I said no
The first hospitalisation was traumatic in ways I do not fully have language for. I had been brought in involuntarily after a long episode in which I believed my downstairs neighbour was poisoning my apartment with carbon monoxide. I had not slept in five days. I was put on risperidone in the hospital. The akathisia — the inner restlessness — was unbearable. I paced the unit for fourteen hours a day. I changed to olanzapine. I gained 18 pounds in eleven weeks. I felt like I was watching my own life through a thick window.
When I was discharged, I was told I would be on medication for life. I was given a follow-up appointment. I went to one appointment. I asked for a lower dose. I was told the dose was already on the low end. I went home and tapered myself off over six weeks. I told my psychiatrist after the fact. He was, fairly, upset. I changed psychiatrists.
For two years I lived without antipsychotics. I want to be honest about how this went, because both the "you have to take meds" narrative and the "you can heal without meds" narrative simplify what was actually a complicated time.
What the medication-free years were like
The first six months were okay. I felt clear. I lost the weight. I was working as a barista. I had not had any further symptoms.
The next year was a blur of small flickers. A week of paranoia in the spring. A few nights of voices in the fall. A friend who got worried and called my mother. I told myself each of these was stress and that I had recovered from the episode. I read books about people who had recovered without medication. I joined an online community that was very anti-medication. I felt validated.
In the second year, the flickers got bigger. I had a stretch in November where I stopped sleeping. I had a stretch in February where I called out of work for two weeks because I could not face strangers. I had a single afternoon in April where I sat in a Walmart parking lot for three hours convinced that the cars were arranging themselves in patterns meant for me.
I did not get hospitalised in those two years. But I was not living the life I wanted to be living. I was managing — barely — by withdrawing from people, working part-time, and avoiding any stressor that might tip me over.
What changed my mind
Several things. None of them were a single dramatic event.
A new psychiatrist. I found a doctor who was willing to actually have a conversation with me. She asked what side effects I had hated most. She asked what mattered to me. She did not lecture. She showed me a list of medications, including some I had never heard of, and walked through what each one might cost me in side effects.
Honest data about my own life. I had been keeping a private journal. When I read back through it, I could see what I had been hiding from myself. The "occasional flicker" had been happening every few weeks. My functioning had been quietly worsening. The narrative I was telling myself in the present tense was different from the record on the page.
An honest conversation about long-term outcomes. My psychiatrist showed me data — including findings summarised by the RAISE study and subsequent research — about how the duration of untreated psychosis affects long-term outcomes. She did not browbeat me. She just laid it out and let me sit with it.
A friend's question. A friend asked me, gently, "Are you living the life you want to be living right now?" I had to say no. I was getting through it, but I was not living it.
The right medication. I tried lurasidone with my new psychiatrist. The akathisia was much milder than risperidone had been. I did not gain significant weight. The flickers stopped. I was, for the first time in two and a half years, sleeping eight hours a night.
What I would say to someone who is currently saying no
I would not tell you that you are wrong. I would tell you what I wish someone had told me.
First: you are allowed to say no, and you are allowed to change your mind. Neither one is a moral failure. The decision can be revisited as many times as needed.
Second: the side effects of one medication are not the side effects of all medications. There are dozens of antipsychotics, and the differences between them — for any individual person — can be enormous. If the first one was unbearable, the second or third may not be.
Third: keep an honest record. A journal, an app, a calendar — anything. The story you tell yourself about how you're doing is often kinder than the data. You will need the data to make a good decision later.
Fourth: stay in care, even if you are not on medication. The biggest mistake I made in my no-medication years was refusing follow-up appointments. A psychiatrist who knows you will be much more useful when you do need one than a stranger you find in a crisis.
Fifth: define "okay" for yourself, in advance. What level of symptoms would tell you it's time to reconsider? Write it down. Decide it now, while your mind is steady. Psychiatric advance directives are useful for this.
Three years back on
I have been on lurasidone for three years. I am working full-time. I have a partner. I sleep. I have not been hospitalised. I have small breakthrough symptoms a few times a year, which I report to my psychiatrist and which usually settle without dose changes.
I do not regret the two years I spent off medication. They taught me what unmedicated life with my brain actually looked like, which I needed to know. They also taught me, by the end, what I was choosing when I chose medication. I was not surrendering to a system. I was making a trade — some side effects, in exchange for the rest of my life back. For me, today, that trade is worth it. I revisit the decision with my psychiatrist every year.
You can say no to medication and change your mind later — and the way back in matters more than how you left.
A note on safety
You are tapering or stopping a medication and notice worsening sleep, returning voices, increasing paranoia, or any thoughts of harming yourself or others — call your prescriber, a crisis line (988 in the US), or go to an emergency department.
Stopping antipsychotics abruptly can trigger withdrawal symptoms and increase relapse risk. If you are considering it, please involve a clinician — even one who is willing to taper with you is safer than going alone. See our guide on antipsychotic discontinuation and another patient story on stopping meds.
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.