How I told my children I have schizophrenia

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

I am a 39-year-old father of two living in Eugene, Oregon. My son is twelve. My daughter is eight. I have lived with schizophrenia since I was 26, two years before my son was born. For the first ten years of my parenting life, I told my children almost nothing about my illness. They knew Daddy took medicine every day. They knew Daddy went to "doctor appointments" twice a month. They knew Daddy sometimes got tired in the middle of the day and needed to lie down. They had no language for what was actually happening.

Last fall I had a wobble — not a full relapse, just a few weeks of poor sleep and increased paranoia that we caught early — and during that wobble my son, who had just turned twelve, asked me a question I had been dreading for years. "Dad, are you okay?" He did not mean it as small talk. He meant it as a real question. I knew it was time.

What I planned

My wife and I planned the conversation for two weeks. We talked to my therapist. We read the NAMI guidance on talking to children about mental illness. We agreed on the following framework:

• Tell each child separately, at their developmental level.
• Use the actual word: schizophrenia.
• Keep it short. Leave room for questions.
• Reassure them that it was not their fault, not contagious, and not a death sentence.
• Tell them what they would and would not see.
• Let them know who else they could talk to.

We did not script every word. We did write out the three sentences we wanted to be sure to say.

The conversation with my son

I sat with my son on his bedroom floor on a Saturday morning. He was twelve. He had a basketball in his lap and he kept spinning it. I said:

"Hey. I want to talk to you about something I should have told you a long time ago. I have a brain illness called schizophrenia. It is the reason I take medicine every day, and the reason I go see my doctor twice a month. The medicine works really well. I have had this since before you were born. Most of the time you cannot tell I have it. Sometimes, like a few weeks ago, I get a little tired or worried, and that is the illness too. It is not your fault. It is not anything you did. I am safe, and I am going to keep being your dad for a long time."

He stopped spinning the ball. He said, "Is that why you went to the hospital that one time?" I said yes. He said, "Mom told me you had a kidney thing." I said, "Mom told you that because we did not know how to tell you the real thing yet. I am sorry." He nodded. He thought for about thirty seconds. Then he said, "Will I get it?"

I had practiced this answer too. I said, "There is a small chance. The illness can run in families a little bit. But most kids whose parents have it do not get it. If you ever start feeling things that worry you, you tell me or Mom and we will help you. Not because we are scared. Because we know what to look for."

We talked for another twenty minutes. He asked if his friends would think it was weird. I said he did not have to tell his friends anything he did not want to. He asked if I heard voices. I said sometimes, but the medicine makes them very quiet. He asked if I was going to die from it. I said no, this is something I will live with my whole life and I plan for that to be a long time. He hugged me. We went outside and shot baskets for an hour.

The conversation with my daughter

My daughter is eight. The conversation was different. We sat on the back porch with apple slices. I said:

"Sweetie, I want to tell you something about Daddy. My brain works a little differently than most people's. The medicine I take every morning helps my brain feel calm. Sometimes my brain gets noisy and that makes me tired. The doctors call it schizophrenia. It is a long word and you do not have to remember it. The important things are: I am healthy, I love you, and the medicine helps."

She looked at me with the seriousness only an eight-year-old can produce. She said, "So when you nap a lot, that is your brain being noisy?" I said yes. She said, "Okay." She ate an apple slice. She said, "Can I have a popsicle?" I said yes.

That was it. She asked four more questions over the next three weeks, all at random moments — in the car, brushing her teeth, in the grocery store. "Does the medicine taste bad?" "Does Mommy have it too?" "Do my teachers know?" I answered each one as honestly as I could in two sentences and then let her go back to her life.

What I had been afraid of

I had been afraid that they would be afraid of me. They were not. I had been afraid that they would treat me differently. They did not, except in small ways that turned out to be tender. My son, the next time I lay down for an afternoon nap, brought a blanket and put it over me without saying anything. My daughter started kissing my forehead before I left for my "doctor appointment." Neither of them ever asked me to stop being their father. They just had a clearer picture of who their father was.

What changed at the dinner table

The biggest change was that we could talk about my appointments and my medication out loud. I no longer had to hide my pill bottle. I no longer had to invent excuses. When I went to my long-acting injection appointment, my son said, "Have a good shot, Dad." When I had a slow morning, my daughter said, "Is your brain noisy today?" The illness moved from a secret in the house to a fact in the house. Facts are easier to live with than secrets.

What I learned about timing

I had been told by other parents in our community that the right time to tell a child is "when they ask." That is partly right. The fuller truth, in my experience, is that they will ask in their own way long before you notice. My son had been asking, in oblique ways, for years — through questions about my naps, about my "kidney thing," about why I did not drink alcohol at family gatherings. I missed every cue. The day he asked directly was the day I finally heard him.

If you have older children, the AACAP has a useful facts for families guide on talking with children about a parent's mental illness.

What I would say to a parent considering this conversation

• Talk to your therapist or treatment team first. Plan the conversation.
• Tell each child separately, at their level.
• Use the real word for the illness if your child is old enough.
• Reassure them that it was not their fault and that you are safe.
• Be honest about the small genetic risk without making it into a threat.
• Let them know who else they can talk to — a school counselor, a family friend, a therapist.
• Expect questions to come back over weeks and months, not all at once.
• Forgive yourself for not telling them sooner.

For more, see parenting with schizophrenia, talking to young children, and teaching my kids about my illness.

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.