Growing up as the sister of someone with schizophrenia

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

I'm 34. I live in Brooklyn. My older brother has schizophrenia and has had it since I was nine years old. He is 41 now. He lives in a supported housing program in our hometown. I see him three times a year. I love him. I am still, twenty-five years later, figuring out what growing up as his sister did to me.

The years I don't remember well

I was nine when he had his first psychotic episode at sixteen. The years between his first hospitalisation and when I left for college are largely a blur of specific moments. I don't remember whole school years, but I remember individual scenes:

• The night he locked himself in the bathroom and my mother sat outside the door talking to him for four hours.
• The afternoon he tried to throw away every electronic device in the house because he thought they were transmitting.
• The week after his second hospitalisation when my parents forgot to pick me up from soccer practice.
• The Christmas he was in the hospital and we opened presents quietly in the living room.
• The year I learned to make my own dinners because both my parents were exhausted in a permanent kind of way.

I want to write about all of this carefully. He did not choose to be sick. My parents did the best they could in an impossible situation. None of what I am about to describe is a complaint about any of them. It is a description of what it is to grow up as the sibling — what is sometimes called the "forgotten one" in the family of a person with serious mental illness.

What I quietly learned to be

I learned to be quiet. Loud noises set him off. Strong emotions set him off. The household ran best when I was as small as I could be, emotionally. I learned to need very little. I learned to be the one who was easy.

I learned to be vigilant. I could read his moods at thirty paces. I knew which version of him had come down to dinner before he sat in the chair. I knew when an episode was building before my parents did, sometimes by days.

I learned to be embarrassed. He came to my eighth-grade graduation in clothes that did not match and talked too loud during the ceremony. I sat with my friends afterwards and pretended he was someone else's brother. I have carried the shame of that pretending for twenty years.

I learned that my problems were small. Anything I was struggling with — a fight with a friend, a bad grade, a breakup — was always, in the family hierarchy of pain, smaller than what was happening to him. So I learned not to bring most of my problems home.

What no one told me

Nobody sat me down and told me what schizophrenia was. I was nine. I think my parents thought they were protecting me. But what I learned, in the absence of an explanation, was that something terrifying had happened to my brother and that we couldn't talk about it. That left me to invent my own theories. For years I believed it was contagious in some non-specific way. For years I believed it was inherited and would happen to me at sixteen too.

I read recently that first-degree relatives of people with schizophrenia have about a 10% lifetime risk, compared to 1% in the general population. I am 34, and I do not have schizophrenia. The terror I carried for the seven years between his diagnosis and my own twenty-third birthday was, in retrospect, much larger than the actual statistical risk. But no one had told me what to be afraid of, so I was afraid of everything.

What helped, eventually

I was in college when I first joined a support group for siblings of people with serious mental illness. I had not known they existed. I sat in a circle with seven other people who had grown up the way I had, and for the first time in my life I did not have to explain anything. They knew. NAMI runs family support groups; Sibling Support Project has resources specifically for siblings.

I started therapy in my mid-twenties with a therapist who knew about sibling-of-mental-illness dynamics. She was the first person to tell me that what I had described as "easy childhood" had actually had a name: parentification. I had taken on emotional caretaking responsibilities at an age where most kids are just learning to tie their shoes. That was not a virtue. That was a wound.

I read books by other siblings. I read The Center Cannot Hold by Elyn Saks (about her, not the sibling angle, but it humanised the inside of psychosis for me). I read Hidden Valley Road by Robert Kolker, which is about a family with six sons who developed schizophrenia. I cried for two weeks.

What my relationship with my brother is like now

Honest answer: it is small. We talk on the phone once a month for fifteen minutes. We see each other three times a year. He lives in supported housing about 1,800 miles from me. I do not — and I have struggled with this — feel like I can take on day-to-day responsibility for him. My parents are aging. The question of who will manage his care after they cannot is a conversation I have started avoiding.

What I can do is small and consistent. I send him a card on his birthday. I call. I show up at family meetings. I am working on going home more often. I am not the primary caregiver. I am not even close. But I am his sister and I am present.

What I want other siblings to know

1. You are allowed to grieve. The brother or sister you would have had without the illness is a real loss, and grief over that loss does not mean you love them less.
2. You are allowed to have limits. You did not cause their illness. You cannot heal it. You are not failing if you cannot be the primary caregiver.
3. You are allowed to talk about your own life. Your problems are not small just because theirs are large. The hierarchy you learned at home is not a real hierarchy.
4. You are allowed to ask for help. Sibling support groups exist. Therapists who understand this exist. You do not have to figure this out alone.
5. You are allowed to love them complicatedly. Love and exhaustion and resentment and tenderness can all coexist. You are not a bad sibling for feeling all of them.

To my brother

If you are reading this — and I do not know that you ever will — I want you to know I love you. I am sorry for the years I was embarrassed. I am proud of who you are and how hard you have worked. I am still your sister.

For more, see our guide for siblings, a sibling caregiving story, and the NAMI Family-to-Family program.

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.