3 Women Tell Us What It's Really Like To Live With Schizophrenia

Illustrated by Norah Stone.
When it comes to mental health, the facts and figures tell us a lot.
In the UK about one in six people will need treatment for mental ill health during their lifetime and it is estimated that at some time during their life, about one in 100 people will suffer an episode of schizophrenia.
At any one time, about 220,000 people are being treated for schizophrenia by the NHS, yet the illness is still a killer. Sufferers have a 5-10% chance of dying by their own hand within 10 years of diagnosis, which is around two and a half times higher than the general population. Schizophrenia strikes most often in late teens and early 20s, and slightly later in women than in men.
But the statistics don't tell us everything, and stigma and misunderstanding about schizophrenia is rife, as three women who have the illness told us. Here they describe when they got their diagnosis, what it really feels like to hear voices in your head, and how we can better help friends and family who have mental health problems.
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Alice Evans, 40

I first began to have symptoms of my condition at around the age of 19 or 20. I had been depressed for a while (since the age of 16) and my depression led on to having symptoms of schizoaffective disorder. I started hearing voices, seeing things that other people couldn’t see and losing concentration and motivation. I felt very low and had thoughts at times of taking my own life.

I was diagnosed with schizoaffective disorder at around age 30. I had moved away from home to start art school in London and I went to see a psychiatrist. I had been experiencing a very low mood and what is termed psychosis. I was experiencing both delusions and hallucinations.

The lowest point was really some time before this when I had gone to visit a friend in the USA and started being unwell in another country. My mum had to come and collect me and take me back to the UK as I was not well enough to fly unaccompanied. When I got a bit better and realised how much it had cost my mum to collect me, I felt awful.

My family have stuck with me through the most difficult of times. They have been incredibly supportive and I feel extremely lucky to have them around. The experience of schizoaffective disorder can be incredibly isolating. When I was first unwell many people didn’t understand what was happening to me and avoided me, which tended to make the feeling of isolation significantly worse. I think the stigma attached to mental health conditions was even more profound then and many had very closed minds and didn’t understand how to be kind. Things are gradually improving in some ways but much more still needs to be done.

Now things are getting better. I’m beginning to enjoy life. I’m running a business taking photographs alongside working as a visual artist. The work I make is largely film and poetry. I’m pursuing a PhD in filmmaking and am trying to get my life together. I work in schools to try to combat the stigma attached to having mental health conditions. I make artwork and poetry now, which sometimes reflects on my experiences of psychosis.

The greatest thing that has helped my symptoms improve is finding a group of friends who accept me and don’t judge me having a severe mental health condition. They are kind and understanding when I am unwell. I think it helps being among the creative community as the profession is one of the places where creative thinking and difference is embraced, even valued. My friends are also pretty kind people in general and I have found somewhere where I can be accepted. I found it very difficult to maintain work in other environments because of the stigma attached to my experiences. Having a mental health condition definitely indicates who your true friends are.

One of the biggest clichés or misconceptions around schizophrenia is that it makes you violent. Violence is not a symptom of schizophrenia. People with a mental health condition are statistically more likely to be the victims of violence than the perpetrators of it. Poor reporting in the press and in TV and film often increases the stigma attached to schizophrenia by sensationalising isolated events of violence. These isolated incidents happen when the ridiculously underfunded NHS mental health services are not given the money or resources to look after or support people properly when they are severely unwell.

The last 12 months have seen really severe cuts to these services which means that people are having to travel far away from home and family in order to get support that they urgently need. This puts even greater strain on friends and family when they are already extremely concerned about their loved ones.

Personally I have always been more terrified of other people than they ever could be of me when I am experiencing psychosis. I never felt or acted violently towards another. I am far more at risk, when I am feeling very low, of hurting myself.

There is also the funny conception that people with a mental health condition such as schizoaffective disorder are either geniuses or extremely stupid. This is often the way they seem to be portrayed in films. In reality, we can lead fulfilling lives but need more help and support to achieve what people can take for granted such as maintaining employment, having a romantic partner or, in the most difficult times, remembering to wash and dress.

I have been lucky enough to access therapy and this has also helped me make sense of some of the more traumatic aspects to having a severe mental health condition. Even though I sometimes find that I may have different thinking and behaviours to others, this has helped me in some way make sense of that. In some ways the hallucinations and delusions take away from the person experiencing them because it is not something other people can accept or share. The lack of shared narratives with others can make the condition extremely socially isolating. Having therapy has helped me come to terms with this and helps me manage my condition.

Living with a mental health condition can change from day to day. Sometimes it feels as if my own mind is causing extreme pain and distress and in those moments life feels very bleak and it is hard to see ahead. When I am well I value pretty much every moment of life because I’ve seen such difficult things that even the mundane stuff seems joyful.

My advice for everyone really, not specific to those with a mental health condition, is above all else be kind. You don’t know what anyone is dealing with in life and try not to patronise or underestimate. Also try and call or visit people you know with a mental health condition. Don’t give them a cold shoulder. If people are too unwell to make conversation or take visits, then try to support the people caring for them. It can be a very lonely experience for all concerned if we don’t care for each other.
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I wasn't making sense in my speech. I had delusions of reality, confusion and was hearing voices.

Theresa Duncan, 24

I began to have symptoms in June 2017. I experienced hallucinations. I wasn't making sense in my speech. I had delusions of reality, confusion and was hearing voices. I was diagnosed with schizophrenia in September 2017. I began to have suicidal thoughts and attempted suicide leading up to the diagnosis. I felt at my lowest when I attempted suicide, which was in August 2017. My thoughts became irrational and I felt very emotional and lonely.

My friends and family have been extremely supportive, my father in particular. They visited me at the mental health hospital during my recovery and diagnosis, and have been very close to me. A great family support network and a good aftercare team has made living with schizophrenia easier.

Now things are getting back to normal, I have just got back into work again and doing things that I love. I love writing poetry, I have just published a book called Captive Release where I describe and speak about my psychotic episodes and delusions.

There is a stigma and a misconception around schizophrenia. There are people that think it is a negative thing, that people who have it are socially incapable of living in normal society. We can change them by educating ourselves more about the illness and see how people are truly affected by the condition.

It is a bit strange having a new diagnosis such as this. I take my recovery day by day – with the medication and therapy and psychology sessions, it can seem like an overload at times so it can be difficult to juggle.

Schizophrenia is a mental illness that can make you feel confused about reality, see things that aren’t there, and hear voices that other people cannot hear. It isn’t something that people should be afraid of or dismiss. It could happen to anyone at any time.
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Kerry Martin, 34

I got my diagnosis for schizophrenia about five or six years ago, but I've had mental health problems in one shape or another since I was quite young. The first time I was in hospital was when I was 15.

When I was a teenager, I was getting extremely badly bullied in school to the point that I literally wouldn't talk to anyone outside my immediate family for a month at a time. Even though I was going to school, no one there would speak to me and I was just getting more and more isolated, my home situation was quite difficult, I felt I didn't have any support and things just sort of spiralled around and around in my head until I was pretty confused about what was real and what wasn't.

Basically I had all sorts of mental health problems which generally affected my life quite badly but it kept being put down to depression. For a lot of my 20s, I was really quite unwell. I wasn't leaving the house much, was spending most of my life in bed with a blanket over my head, wanting the world to go away. Then in my late 20s, I was assaulted, a whole lot of things went wrong and I ended up in hospital where I eventually got diagnosed with psychosis. I got referred to the Insight Team for psychosis for the first time who were fantastic and really helped me turn my life around, got me on track to a place where I was able to do a bachelor's degree. Since then I've got married, I'm working, life is pretty good again.

Before that, life was very confusing. On a good day then I could be out and about and see friends, but good days were just coming less and less often and I was spending more time stuck at home, trapped with the ideas in my head and with voices.

I spent a lot of time feeling very guilty about things that couldn't possibly be my fault. Things like earthquakes, natural disasters, I was connecting them with myself in ways that wouldn't have made sense to anyone on the outside. For example, I thought sometimes, if I got out of bed, it might cause an earthquake on the other side of the world, so I'd just curl up in a ball and try to stay really still. And that was terrifying because my full diagnosis is schizoaffective disorder, it's a mix of schizophrenia and bipolar, so as well as hearing voices and getting unusual ideas, I also get moods that go high and low. Being manic isn't nearly as fun as it sounds because a lot of people think, yeah that sounds great, you think you're rich and famous and whatever, but for me it was like, 'If I've got all these superpowers, why is the world still such a shit place? Clearly it's all my fault and it's all my responsibility to sort out and I need to do something to stop all these millions of people dying every day.'

It was terrifying. I'd think that everyone else knew about this so when I went out, then people would be watching me in the street and looking at me and pointing and staring. And I thought that was happening because I was a terrible, evil person who was responsible for all the bad things that happened in the world.

Some people understood me, I think particularly people who've had depression because a lot of my thoughts are like depression but with big stompy boots on. Some people didn't understand. It makes me a target, because people have a lot of odd ideas about what people with schizophrenia or people who hear voices are like. I've had people say I'm violent or dangerous or scary or lying about things, or can't be trusted, and none of it's true. The risk factor for violence for people who hear voices is the same as for everyone else.

There's a stigma about schizophrenia in particular, and psychosis, that really gets me. The terms get used in almost a jokey way, in a sort of horror/asylum/madhouse/Halloween way, it's almost like people don't think they're a real thing that happens to real people. I know people who have been diagnosed by a psychiatrist for a decade or two and still say, 'Well I can't possibly have that because that would mean I'm a terrifying axe murderer', when that's clearly not what the psychiatrist means, it's just a description of an illness, but that's what using these terms, even in fun, as a synonym for 'freak show' does to people.

For me now, it's almost like a bad day these days is what a good day used to be. I'm married, I work as a researcher around mental health and I have two gorgeous pet rabbits who are a joy. My rabbits are called Nye Bevan and Edith Cavell, named after famous people in the history of public health. I have lots of hobbies, I go running, I genuinely have a life now and it's so much better than things used to be. I put a lot of that down to having really good support from the NHS early intervention Insight Team for psychosis services, they absolutely helped me turn my life around and kept telling me that even though I was still having problems, I could have a good life around that and I could manage. I'm pretty upset that over the last few years, we've seen a lot of cuts to the NHS, mental health has been hit particularly badly by this and I'm concerned that those services won't be there anymore for the people who need them. So I still want people to reach out and to talk to people but also campaign to make the support available.

There is hope. A lot of mental health conditions are very treatable and some of them you can be completely better within a year or so and some of them, even if you're not completely better, like my voices, you can learn to have a pretty good life. I do a lot of health economics and we know that every £1 spent on early intervention in psychosis services saves about £9 over the next five years across all sorts of different services, but it's still an upfront payment system and the money is just not there. And that doesn't even make any financial sense, never mind the huge human cost of people having their life ruined.

One thing I'd say to people who maybe know someone experiencing mental health problems: You don't have to be an expert to make a lot of difference in someone's life, you just have to be a friend. And even if you can't solve all their problems, that's fine, just try and carry on keeping the person involved in things they went to before and encouraging them to do things that are part of normal life for them. When I become unwell, I tend to isolate myself so I get out of touch with people and eventually then some people will stop asking me to things because I never come. It is important to keep on trying to stay in contact with your friends, and encourage them, because when they start getting better, that'll be a really important part of their recovery.

If you are experiencing mental health issues and need support, contact Rethink

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