I’ve had a lot of psychotic episodes but I’ve always managed to get back to normal life

Photo of two women by a lake

Paula, 55 years old

“I started reading into everything. I didn’t trust people and I was worried they’d betray me. I think it was because I’d lost self-confidence because I was misinterpreting the world around me.”

I had my first episode in my mid-20s. I was a student, in the middle of writing my thesis. I was working through the night, drinking loads of coffee and getting hardly any sleep. On top of that, things weren’t going well with my housemates or in my love life.

At some point, one of my housemates noticed I was behaving strangely. And I noticed it too. No one around me understood me anymore.

I thought everything was about me, was very jittery, and couldn’t sleep

I started reading into everything. I’d hear song lyrics, like “she wants to be perfect,” and automatically think they were about me. Or I’d catch snippets of other people’s conversations and think they were talking about me.

I was also very jittery, wasn’t eating or sleeping properly, and my hands kept shaking. I had hypersensitive hearing. I wasn’t hearing voices but I often thought I could hear a phone ringing or a police siren when there wasn’t one.

I didn’t trust people at all and I was worried they’d betray me. I think it was because I’d lost self-confidence because I was misinterpreting the world around me.

I refused to go to a psychiatric hospital

My sister and her husband came and tried to calm me down but it didn’t work. I couldn’t sleep and I kept getting up at night. My parents – both doctors – didn’t know how to help either.

In the end, my family took me to a neurologist who urged me to get inpatient psychiatric treatment. When I heard that, I got frightened and didn’t want to go. But I had lots of talks about it with my parents and they managed to convince me.

When I got to the psychiatric hospital, they injected a sedative, which knocked me out straight away. When I woke up in the middle of the night, I didn’t know where I was and panicked. It was a traumatic experience and permanently shook my trust in hospitals and everyone who works in them.

When the second episode happened, I recognized the symptoms very early on

The second episode also happened at a time when I was very stressed, very busy at work, and not getting enough sleep. I realized the symptoms were the same as the first time around and I knew straight away that I needed help. I told my partner, Julian, that I wanted to go to a psychiatric hospital.

When we got there, I panicked just before they gave me the sedative injection. It was a mixture of lots of strong emotions. I was frightened they were going to lock me away and I wouldn’t be able to make my own decisions anymore. But I was also furious with myself because I knew I needed help and could no longer look after myself. I didn’t want to be taken away from life as I knew it.

Because I was resisting, they held me down and sedated me with force, which was a terrible experience too. So were my later episodes: Being admitted to the hospital was always traumatic for me. At one doctor’s appointment, they called the police because I was refusing to accept I was ill. They said I had to be hospitalized and forced me to go.

The psychosis is followed by deep depression

One of the reasons I resisted so much was that I had an idea of what was going to happen to me: Four to six weeks in the hospital, followed by months of slow recovery. And then the – as if your brain is exhausted by the acute phase and needs to recover. You’re in a pit and have to dig your way back out, bit by bit. Find your way back into everyday life. It’s exhausting.

I had after each psychotic episode. The good thing now is that I know it’s part of the illness and will go away again. It might not sound like much to be positive about. But when you’re in the middle of a bout of , you don’t believe it will ever end. Having had several episodes, I’m calmer about it all now.

Hormones played a role

One of my episodes happened after my daughter was born, when she was ten days old. That's known as “postpartum psychosis.” I couldn’t sleep at all, but it wasn’t the stress of having a newborn baby. I’d realized the insomnia was an early symptom of psychosis so I wanted to go straight to the psychiatric hospital.

Apparently, hormonal changes were the main trigger. My other episodes all started when my period started too. So I take on top of the medication for my schizophrenia.

I’m glad medication is available

I’ve been on medication ever since the third episode. It’s a combination of antipsychotics, antidepressants and .

When I notice an episode coming on, I take a different antipsychotic as well, to protect me from delusional thoughts. When I have extreme anxiety and don’t trust anyone anymore, I take a drug that calms me down and stops me worrying. But I don’t take it for longer than two weeks.

The medication makes me put on a lot of weight, which isn’t a great side effect. But I’m glad it's available.

I gradually came to realize the illness would be with me my whole life

The episodes in the years after that – all about one year apart – tended to come when I’d been very stressed. We were living abroad, I couldn’t cope with having a job and a child, and our marriage began to suffer as a result.

By the time I had my fifth or sixth episode, I’d come to understand that the schizophrenia and psychosis would be with me my whole life. I accepted it for what it was. And I tried to understand the illness better. Because, for a long time, I didn’t know what it was exactly. When I had the first episode, they kept talking about a “nervous breakdown.” No one mentioned the word “psychosis.” Maybe everyone wanted to protect me and they were hoping it was a one-off thing.

After the second episode, my doctor did tell me a little bit more about how the illness might progress. Some people have just one schizophrenic episode, or only a few. But the episodes can also come back regularly and become a chronic issue.

I thought it was better not to think about it

To be honest, for a long time I didn’t want to know more about the illness than I had to. When my doctor suggested psychotherapy might help, I said no at first. I didn’t want to be confronted with a schizophrenia . It would’ve upset me too much. I thought it was better not to think about it, and just carry on.

But I hadn’t understood the real point of therapy – to get support and learn how to organize my daily routine to prevent psychotic episodes.

Fortunately, a few years after the third episode, I did decide to start psychotherapy. And that’s a key reason why I’m doing okay now. I haven’t had an episode for seven years, and I know how to react when I notice early symptoms. Without the therapy, I think I would've ended up practically living in the hospital all the time.

I can recognize stressful situations early on now

It was important to realize I had to accept and live with the illness. But also that I could still have a very good life. Therapy provided very specific advice on how to deal with certain situations, like feeling anxious or not being able to sleep.

My therapist also pointed out all the things I had already coped with and that I was doing really well. That really did me good. Because one of the effects of psychosis is that I’m less confident than I used to be, and I think I don’t do things well enough. Therapy gave me the skills I needed to cope with everyday life and believe in myself again.

I can recognize stressful situations very early on now. Like when there’s a combination of stress factors, like a new challenge at work and a death in the family. I start to worry I might be forced to go back to the hospital – and that worry comes before the other symptoms have even started.

When that happens, it helps to get time off work, rest, and take a step back. Three weeks is usually enough. If I do that, it ends up being a sort of “psychotic slump” rather than a full-blown psychotic episode.

I have to adjust my medication then too. I start taking slightly more of the antipsychotic drug and I add another one for extra protection. I’m at a point now where I know what changes to make. When I notice early symptoms, I contact my doctor and adjust the medication myself.

The illness has nothing to do with your character or a lack of discipline

I found it really helpful to learn more about the illness. The course I attended in the hospital was particularly useful. The knowledge I gained also helped me understand why prevention is so important: Routines like getting enough sleep and eating at regular times give me stability. So does freeing up time to see friends. That does me good and helps me relax.

An eye-opener for me, and what gave me a great sense of relief, was that schizophrenia has nothing to do with my character or a lack of discipline. So I’m not responsible for my illness.

The help I get from my family and friends is crucial

The support I get from my family is a great help. I can lead a completely normal life, with a child, a partner and a job. My husband, Julian, has known about everything since my second episode, and he looked after our daughter when I had postpartum psychosis. He’s always got my back and I’m very grateful.

It’s important for our relationship that he’s there but he doesn’t tell me what to do. He’s not constantly looking out for possible signs of an episode. He assumes I’ll notice them myself and do what’s necessary. He has a lot of faith in me.

The same goes for my parents, who’ve been extremely supportive. My sisters have always been there for me too, sending me postcards and small gifts. Just showing they’re thinking of me without actually talking much about my illness.

I have some really understanding friends who know all about it. When I have an episode, they accept me the way I am. They visit me in the hospital, and afterwards we just carry on as normal.

I know I’m needed and I haven't been shunned due to the illness, which often happens to other people with schizophrenia and psychosis.

Many people with schizophrenia keep it secret and shut themselves off

That’s why I’d really like to see more awareness of the illness in society. Then people wouldn’t try to hide it as much or shut themselves off because they’re ashamed.

My advice to someone who’s started having episodes would be to talk to their family and close friends and look out for early signs. And to figure out together what factors might trigger an episode. For me, it was lack of sleep, mental stress and hormonal changes. But it differs from person to person.

It’s also important not to overdo things, though, and not keep watching yourself for signs all the time. And there’s no need to be afraid of psychotherapy.

Generally speaking, things have gone well for me. I’ve had a lot of psychotic episodes but I’ve always managed to get back to normal life and live the way I choose. With guidance from my doctor and the support of my family, my husband and my friends, I can cope well with the illness and lead a good life.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.

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Created on June 13, 2023

Next planned update: 2026

Publisher:

Institute for Quality and Efficiency in Health Care (IQWiG, Germany)

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