Retiring at 62 with schizophrenia

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

I am 62, a woman, and six months ago I retired from a forty-year career as a postal worker in eastern Tennessee. I have had schizophrenia since I was 21. I have been hospitalised three times in those forty years, all of them more than two decades ago. I have raised two children, paid off a small house, and have a few thousand dollars in savings. I want to write about retiring with schizophrenia, because the conversation about ageing with serious mental illness usually skips past the specific moment of leaving work, and that moment is worth talking about.

How I made it forty years

I want to be honest that I am one of the lucky ones. The combination that made my long working life possible was: I responded well to medication early, I had a stable husband for thirty-five years before he passed, I had a union job with predictable hours and good health insurance, and the postal service is the kind of structured, repetitive, physical work that suited me. Many people with schizophrenia want what I had and cannot get it. I do not write this story as a model. I write it as one possible shape.

The medication that has held me together for most of those forty years is fluphenazine decanoate (Prolixin Decanoate), an old long-acting injection from the first generation of antipsychotics. I have side effects from it — some stiffness, occasional restlessness — but I tolerate them and I do not have voices when I am on it. My doctor has offered to switch me to newer medications several times. I have declined. The thing that has worked has worked.

The decision to retire

I had been thinking about retirement for about three years. The actual decision came down to a few specific things:

• My back was hurting in ways that were not going to get better.
• The post office had been steadily understaffed and the workload had grown.
• I qualified for full Social Security retirement at 67, but I could take reduced benefits at 62, which combined with my pension was just enough to live on.
• My adult children were grown and stable.
• I wanted some years of life that were not built around shifts.

I met with a Social Security counsellor and ran the numbers. I met with a financial advisor through a free programme at my local senior centre. I did not have a lot of money to manage; the planning was about making the modest amount I had stretch for the next twenty-plus years.

The Social Security question

One thing that came up: I had spent my early twenties on SSDI for about three years before returning to work. The Social Security Administration treats your retirement benefit calculation differently if you have been on disability. My counsellor walked me through the options. The piece I want to flag for others is that SSA's retirement planning page is useful, and if you are considering early retirement, it is worth a real conversation with a counsellor before you file. Once you start benefits, your options narrow.

I also had to switch from my employer health insurance to Medicare. I was already enrolled in Medicare Part A; I added Part B and a Part D drug plan that covered my fluphenazine. The transition took about three months and a lot of paperwork. NAMI's helpline and a local senior services agency helped me through it.

The first three months

I want to be honest that the first three months of retirement were one of the harder periods of my adult life. I had not anticipated that. I had been looking forward to retirement for years.

What was hard:

• The structure of my days disappeared. Forty years of shift work had given me a built-in schedule. Without it, I drifted. I stopped eating at regular times. My sleep got irregular. By week three I was sleeping nine hours then eleven hours then five.
• I was lonely in a way I had not been at work. The post office had been my main social environment. Without it, I sometimes went four days without speaking to another adult.
• My voices, which had been quiet for years, returned faintly. Not an episode — just the faintest background sound that I had not heard since my forties. I called my psychiatrist on day twenty-one. She said: this is a transition. Your nervous system is recalibrating. Build structure. Move your body. Talk to people. She did not change my medication.

What I built

By month four I had a structure. I want to write it down because for me, the structure has been the medication of retirement.

• A morning routine. Up at 6:30, coffee, the local paper, twenty minutes of walking. Same every day.
• A weekly volunteer shift at a community garden two towns over. Three hours every Wednesday. I drive there, work, come home tired and proud.
• A standing weekly lunch with two retired colleagues. We have not missed a Friday in five months.
• A monthly NAMI peer support meeting. The first one I had ever attended. I went out of curiosity. I have gone every month since. NAMI peer support groups are free and exist in most areas.
• A library card put to active use. Two books a week. The librarians know me by name now.
• A weekly call with my daughter and a Saturday call with my son. Predictable, scheduled, brief, anchoring.

The unexpected good part

I want to write about this honestly, because I had not expected it.

Retirement has given me space to think about my whole life in a way that working never did. I have been remembering things — small good things, hard things — that I had not had time to remember in years. I have been writing some of them down for my children to read someday. I have been reading novels I had not opened since I was nineteen. I have been learning the names of the birds in my back garden.

I am 62. I have a chronic mental illness. I am not wealthy. I am not famous. And I have a life right now, in this small house in a small town, that is more peaceful than the lives I have read about in retirement-advice columns. The peace is not despite the illness. It is alongside the illness, the way it has always been.

What I would say to someone approaching retirement

• Plan the structure of your post-work days before you stop working. The day after retirement is too late.
• Talk to a Social Security counsellor before you file. The decision compounds for the rest of your life.
• Sort out Medicare in advance. The transition takes longer than you expect.
• Tell your psychiatrist you are retiring. The transition itself can stir up symptoms; they will want to know to watch with you.
• Build social structure deliberately. The workplace was doing more of that than you realised.
• Give yourself three months before judging the experience.

For more, see older adults with schizophrenia, Medicare for schizophrenia, and financial planning.

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.