Life after twenty years of psychosis

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

I am 47, a man, and I live in a small apartment in Cleveland with my dog. I have schizophrenia. I was diagnosed in my second year of college, when I was 20. The first twenty years after that diagnosis were chaos — fourteen hospitalizations, eight medication trials, three suicide attempts, two stretches of homelessness, the loss of my marriage, the loss of two jobs I loved, and a long period in my mid-thirties when I was sure I would not see forty. The last seven years have been stable. I work part-time. I see my mother every week. I have a small group of friends. I sleep through the night. I want to write about both halves of this, because the recovery story is not a triumph over the chaos. The chaos is part of the same life.

What twenty years of cycling psychosis actually looked like

The first ten years were marked by the search for a medication that worked. I tried haloperidol, risperidone, olanzapine, quetiapine, aripiprazole, ziprasidone, paliperidone, and lurasidone, in that order, before clozapine was finally suggested at age 32. Each medication had its own pattern of partial response, intolerable side effect, hospitalization, and switch. By the time I was 30, I had a long sheet of medications that had failed me and a deep mistrust of the next one anyone proposed.

The second ten years were marked by the social losses that the illness had been quietly causing. My wife left at year eight. The friends from college had drifted away by year ten. I lost my job as a librarian at year twelve, after a hospitalization that had been preceded by months of poor performance I had been hiding. I moved into a one-bedroom apartment that I lost during a manic-tinged stretch at year fifteen. I lived in a series of rooming houses for two years. I had two more hospitalizations during that period, the longer of which was 87 days.

By year nineteen, I was back in stable housing, on a regimen of clozapine and a long-acting risperidone injection that had been started during the long hospitalization. The cycle of relapse and rehospitalization was, for the first time, slowing. I did not know yet that it was the beginning of the stability that has lasted the seven years since. I thought it was another pause.

What turned

I cannot point to one thing. I want to be honest about that, because the stories that present a single turning point — a single medication, a single therapist, a single insight — are not how it actually works for most people who have been ill a long time. What turned, in my case, was a slow accumulation:

• Clozapine. Started at year twelve. The most effective medication I have ever taken. It quieted the voices in a way nothing else had. The blood draws and the side effects were significant — see our clozapine overview — but the trade was worth it.
• The long-acting injection. Added at year nineteen. Removed the daily decision to take the second medication. This stripped out one of the most reliable failure modes of my prior decade.
• An assertive community treatment team. I was assigned to an ACT team after the long hospitalization. They came to my apartment. They drove me to appointments. They held my hand through bureaucracy I could not navigate. I stayed with the team for four years before stepping down. The SAMHSA ACT model is what saved me from another fall.
• SSDI and stable housing. I qualified for Social Security Disability Insurance during the long hospitalization. The reliable monthly check let me afford a one-bedroom apartment in a quiet building. Stable housing was, in retrospect, the single biggest external factor in my stabilization.
• A peer support specialist. Through the ACT team, I was paired with a peer specialist who had himself been hospitalized many times in his twenties. We met for coffee weekly. He understood things my therapist could not. The peer relationship is now in its sixth year.
• My dog. I adopted a five-year-old shepherd mix four years ago. She gives the day a shape. She makes me leave the apartment. She has not, by herself, kept me well — but the structure of caring for her has been part of the architecture.

What stability looks like at year 27

My voices are still there. They are quieter than they have been at any point since college. I hear them most clearly when I am tired, sick, or under stress. They no longer command. They no longer accuse. They are mostly background, and sometimes they are quiet for weeks. I take this as a state of grace, not a guarantee.

I work twenty hours a week as a clerk at a small public library. The work is, in a quiet way, the closing of a loop — I had been a librarian when I lost my last full-time job, twelve years ago. Returning to libraries, even in a smaller role, was something I did not think would be possible. The library knows about my illness. They have been kind.

I see my psychiatrist every six weeks. I see my therapist every other week. I have monthly long-acting injections at the clinic. My blood draws for clozapine are now monthly rather than weekly, after years of stable counts. My peer specialist and I still meet for coffee. My ACT team has stepped down to a check-in every three months.

I sleep eight hours a night. I eat three meals a day. I walk the dog twice a day. I read in the evenings. I see my mother every Sunday for lunch. I have not been hospitalized in seven years.

What twenty years cost

I want to be honest about this too. Stability is not the same as restoration.

• I do not have children. The window in which that would have been possible passed during the worst years.
• My career is a fraction of what it would have been. I am a part-time clerk in a building where, in another life, I might have been a head librarian.
• My retirement savings are essentially zero. I rely on SSDI and will rely on Social Security retirement. I will not have the financial flexibility most of my high school classmates have.
• Many of the friendships of my twenties are gone. The friends I have now I made in my forties.
• I have permanent metabolic changes from years of high-dose olanzapine. I have type 2 diabetes. I take a small handful of medications for body things, on top of the psychiatric ones.
• I have, sometimes, a kind of grief about the years that ran out without me. The grief comes and goes. I do not try to talk myself out of it.

None of this is a complaint. It is a ledger. I want anyone reading this who is in year three or year eight or year fifteen of cycling psychosis to know that stability is possible after a long time, and that the stability that comes does not erase what came before. Both belong to the same life.

What I would tell someone in their tenth year of bad ones

• The medication that finally works may be one you have not tried yet. Clozapine is underused in the US. Ask about it.
• If you have not been on a long-acting injection, ask about it. The structural relief of removing daily medication decisions is hard to overstate.
• If you do not have an assertive community treatment team and you have had multiple hospitalizations, ask whether you qualify. The team I had was the difference between two more hospitalizations and the seven stable years that followed.
• SSDI and Section 8 are not failures. They are infrastructure. Apply, even if you have been told before that you do not qualify. Caseworkers can walk you through it. NAMI helplines can refer you.
• Find one peer. The relationship of equals — someone who has been where you are — is something no clinician can give you.
• Do not measure your life against your high school classmates. Measure it against last year. If last year was less broken than the year before, you are doing the work.

Twenty years of psychosis is a long time. Seven years of stability is also a long time. I am sitting in my apartment in Cleveland writing this. The dog is asleep on the rug. The light is coming in through the window. None of it is what I imagined at 20. All of it is mine.

For more, see coming back from rock bottom, building a life after five hospitalizations, and ten years into recovery.

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.