Starting medication after resisting for seven years

This is a composite story, drawn from common experiences shared in the schizophrenia community. It does not depict a real individual.

I am 30 years old. I live in Vermont. I was diagnosed with schizophrenia at 21, and I refused to take antipsychotics for the next seven years. I started medication just after my 28th birthday. I have been on it for two years now. I want to write about both the years of refusing and the morning I finally swallowed the first pill, because the conversation about medication adherence often skips over how legitimate the resistance can feel.

Why I said no for so long

The reasons were real. I want to list them honestly because I think people who have never been in this position often dismiss medication refusal as "lack of insight." For me it was not that.

• The first medication felt awful. In the hospital they started me on a high dose of haloperidol. My limbs felt thick. My face froze. My thoughts moved slowly. I left the hospital after eight days and threw the pills out within a week.
• I had a story about who I was. I was a graduate student in philosophy. My mind was the only thing I really had. The idea of taking a drug that would dampen my thinking felt, at the time, like agreeing to lose myself.
• I had read too much and too little. I had read all the critical literature on antipsychotics — Whitaker, Moncrieff, Breggin — and almost none of the long-term outcome research that complicates that picture. I was getting one side of an argument and treating it as settled.
• I was managing, sort of. Between episodes I had stretches of months where I felt fine. I told myself the episodes were rare and probably stress-related. I underestimated them.
• The cost of refusing was hidden from me. I did not see, in real time, the friendships I was losing, the academic progress I was not making, the slow narrowing of my life.

I cycled through three more brief hospitalisations over those seven years. Each time I went in, started a low dose of something, was discharged after a week or two, and quietly stopped within a month.

What changed

It was not a single event. It was a slow accumulation, but if I had to name three things, they would be these.

A psychiatrist who didn't fight me

Around year five I switched to a psychiatrist who, in our first appointment, said: "I'm not going to spend our time trying to convince you to take medication. I'd rather we work on whatever you are willing to work on. If you ever want to try medication again, I'll be here." That changed everything. For four years I had been in a defensive crouch with every clinician. He took the fight out of the room.

We worked on sleep. We worked on substance use (I had been smoking a lot of cannabis, which was clearly making things worse — see cannabis and psychosis). We worked on my relationship with my voices, using techniques from CBTp for voices. He never lectured me. He never bargained. He waited.

An honest conversation with my sister

My older sister, who is a nurse, sat down with me at year six and said something I had not been able to hear before. She said: "I am not going to tell you what to do. I want to tell you what I see. I see you living a smaller life every year. I see you isolated. I see you scared all the time. I miss you."

She did not mention medication. She did not have to. She had named the cost of refusing without making it about pills.

A bad week I could not explain away

The third thing was a bad week in the spring of year seven. I had been holding it together for about six months. Then in one week I had an interaction with a barista that I read entirely as evidence of a conspiracy against me. I called my mother in the middle of the night, convinced my apartment was bugged. I went outside at 4 a.m. to walk because I could not sit still.

The next morning, sitting at my kitchen table with cold coffee, I could see that the week had not made sense. Not because I was crazy — that was not a useful word — but because my brain had done something it should not have done. I called my psychiatrist that morning. I said, "I want to try."

Starting

We started low. He suggested aripiprazole because of its relatively favourable side-effect profile, especially around the cognitive symptoms I was most worried about. We started at 5 mg and titrated up over six weeks. The first two weeks I had akathisia — restlessness in my legs that drove me half-mad. He added a low dose of propranolol and the akathisia faded over a week. See our akathisia article.

By week eight I felt different. Not flat. Not muted. Just quieter inside. The constant low-grade hum of suspicion that I had thought was my personality turned out to be something else. The barista no longer felt like a threat.

What I lost and what I gained

I did not lose my mind. I did not lose my philosophical ability — I am still in graduate school, slowly, and still able to write. I gained roughly twelve pounds in the first year, which I am working on. I gained, more importantly, three uninterrupted years of stability for the first time since I was 18.

I gained back my sister. My friends. A part-time teaching position. The capacity to read for pleasure, which I had lost. A relationship with my own life that did not feel like a constant defensive crouch.

What I would say to someone refusing right now

• Your reasons are probably not stupid. They may be partial. They may be missing some of the long-term picture. But they are not stupid.
• If you have had bad medication experiences, that information is useful. There are many antipsychotics. The first one that worked for the hospital is not the one that has to work for the rest of your life. See finding the right medication.
• Find a clinician who will not fight with you. Pressure makes refusal harder, not easier.
• Track what is actually happening — sleep, episodes, relationships, work. The data may, eventually, change your mind faster than any argument.
• If and when you decide to try again, you can start low and go slow. You are not signing a contract for life. You are running an experiment for a few months.

For related perspectives, see saying no to meds and changing my mind and the day I stopped taking 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.