I can't have schizophrenia - I'm a psychology student!
March 2, 2011
Emma Harding, from Tooting, South London, became psychotic while studying for a degree in psychology. Now recovered she is a clinical psychologist for the South London and Maudsley NHS Foundation Trust, and works with people with psychosis.
Below psychminded exclusively publishes Harding's chapter in a new book, Psychosis: Stories of Recovery and Hope, which details her experience
The first time I realised there was something wrong was on the car journey from my parents’ house in Cambridgeshire to start university in Canterbury. Throughout the entire journey, I was crying my eyes out and getting very upset. This was unlike me because I’m normally quite headstrong and independent. I was thinking about my life and going through big emotional changes for the first time. Beginning university just brought everything out in the open and I struggled to settle in. I was living in a shared house and tried to get on with people because I really wanted to fit in. The truth is I’d always felt like a bit of an outsider. We’d moved house from Buckinghamshire to Cambridgeshire when I was 13 and I went from a posh girl’s grammar school with a very good reputation to a mixed comprehensive school. All the friends I’d hung out with at home had dropped out of school or had been in prison so it was strange being around well-educated people in Canterbury again. It was a bit of a culture shock which amplified the idea that I didn’t fit in. So I tried doubly hard and tried to figure out what people were thinking. I started doing what psychologists call “mind reading” – trying to work out what might be going through other people’s heads based on what I was worried about.
Transition towards illness
I was also struggling with my course. This was the first time I’d studied psychology and I felt like I had a lot to catch up on. The amount of maths you needed completely flummoxed me. I’d been used to having teachers running around after me but suddenly I had to motivate myself, work out how to use academic journals and reference essays. It was all too much to handle and I started to deteriorate, getting nervous and paranoid. In classes, it seemed like the lecturers were talking about psychological experiments that had been conducted on people I knew. I thought they were referring to the things that had happened in my life. Once I was in my room and started hearing whispers and reading about hallucinations in my psychology textbooks. Things clearly weren’t right so I went to the university counselling service and told them I was hearing voices and couldn’t keep up with my work. But it was no help; the counsellor basically said, “Things are really rough for you, why don’t you go and bake some cookies?” All the phones for the student nightline service were in public areas so I couldn’t ring them up either as I was worried that people could overhear me.
Realisation of problem
At the time I didn’t think it was psychosis, though I knew something was badly wrong. One of my tutors had just given a lecture on schizophrenia so I went to see him. He said he didn’t think I had it, because most people who did weren’t aware of it. But I made an appointment to see the university psychiatrist anyway. I’d begun to think people were plotting against me around the university. I’d had this really bad experience in a lecture when I thought there was a spotlight on me and people were ridiculing me. But I’d got it into my head that I wasn’t going to tell the psychiatrist about the paranoia, so I just told him I was depressed and he gave me Prozac. Things had got really bad - I felt like I wasn’t going to get through university because I couldn’t keep up with the work, I had a failed relationship, I felt like I wasn’t getting on with any of the people I was living with and that I wasn’t going to have the success I expected and my parents wanted for me. The only thing I could do was end my life. So the Wednesday after I saw the psychiatrist I took an overdose of Prozac and paracetamol.
By Saturday I kept waking up being sick everywhere thinking, I’m still alive and I’m not actually going to die. My housemates had been knocking on my door but I just ignored them. Eventually I thought, fuck it, and called the doctor. She looked at me after she had opened the curtains in my bedroom and said, “When did you turn yellow?” My liver was damaged so I was rushed to the acute hospital in Canterbury then onto King’s College Liver Unit in London. In the bed next to me was a man with liver failure through natural causes and every day somebody from his family would come and read to him from the Koran in a bedside vigil. It was really moving. I had caused this myself but this poor person had done nothing to deserve it. While I was there a psychiatrist came to see me and asked if I was going to try and commit suicide again, but I said no.
After I was discharged, I went back to university and kind of got through the year, walking out of some exams and not turning up to others. In summer I went home to my parents but was becoming quite paranoid again. I’d asked my dad to lend me some money because I said I wanted to go to Glastonbury. But actually I bought a ticket and went to Holland because I wanted to check if people in other countries were talking about me. When I got over there, I found out that they actually were!
Back home, old friends would come round but it felt like everyone was laughing at me, so I started withdrawing more and more. The hallucinations and delusions were also getting worse. I started hearing whispers and people singing Shakespearean sonnets outside my bedroom window. At first this sounded really nice, but the whispers became voices and the voices got louder. I also thought I’d developed the power of psychic communication and could make it rain or lamp posts flicker on and off when I wanted. It occurred to me that if I could cause all these amazing things to happen, then I actually must be God. In retrospect, I was in such a bad place emotionally I think I was defending myself, like an oyster covering a grain of grit inside itself with pearl. At first being God was quite nice - I could do things for my mum and dad – but it got worse as I remembered the Bible said I would have to organise doomsday and make decisions about who would live or die.
This went on for a couple of months but no one noticed as I was isolating myself. I’d only go out at night and had put all these scarves and altars up in my bedroom. My friends had given up on me and my parents thought I was just going through some weird teenage rebellion. They only really thought something was wrong when I said to them one day, “I’m God”, as if they should have known already. I suppose if you’re God you assume people know. At the time I was aware this was going to be a massively important experience in my life, but wasn’t sure how or why.
Contact with services and treatment
A couple of days later my dad said he had to go to the doctor about his back and asked me to come with him. So I went and he told the doctor he was really worried about me because I had tried to commit suicide and was saying I was God. The doctor didn’t do much, but my dad pushed hard. Within a couple of weeks I was in Hinchingbrooke Hospital in Huntingdon. I was sleeping on a mattress on the floor because I’d dismantled the bed, thinking it was an antenna for evil. I woke up one day to a psychiatrist leaning over me saying, “Emma, I think you’ve got schizophrenia,” but I just said, “I can’t have. I’m a psychology student!” By this time it was December 1994 and I should have been in my second year at university. But I was in a psychiatric unit as a voluntary patient until the following February. I only got the official diagnosis of schizophrenia a couple of years later.
To begin with I was taking chlorpromazine but used to wake up on the floor having fainted in the middle of the night. One doctor put me on trifluoperazine (Stelazine) for a couple of years but it gave me tardive dyskinesia, a side effect of antipsychotic medication which makes your body twitch involuntarily. Then I started getting oculogyric crises, where my head and eyes would roll back in jerky movements. Now I’m on olanzapine which works well and hasn’t sedated me like it does some people.
Due to the medication, I couldn’t hear voices any more and was kind of missing them because I was lonely. But it did help slow my thoughts down and made me realise the size of the mountain in front of me I had to climb. I’d told friends I was in rehab for drug use and convinced myself I had a brain tumour -anything to not admit I had a mental health problem. Loads of other people kept coming into hospital, staying for a couple of weeks then leaving again but it felt like I would be in there forever.
Contact with mental health professionals
The clinical psychologist I saw in hospital was absolutely fantastic and really took me under her wing. She convinced the university to accept me back again to re-sit my exams. Her approach to dealing with me was holistic, she didn’t just try to get rid of the delusions or paranoia but asked what direction I valued and how she could get me there. I remember thinking, “I really want to be like you one day”. She was very calm and thoughtful and it felt like she really had time for me and believed in me. I could have so easily become voiceless but that psychologist really helped me believe I could do something and had something to offer. She taught me how to approach life again and think a bit more carefully about the direction I was moving in.
Losing touch with the first psychiatrist I saw after my suicide attempt was difficult. I know how hard it is for mental health services when people are moving around the country but I think it’s quite worrying that I tried to kill myself and there wasn’t much follow-up. Given that I’d taken an overdose it was probably obvious that I needed some help and support. But my dad had to insist really quite fervently that a psychiatrist came to see me after I’d disclosed that I was God.
Transition towards recovery
Things did get better in hospital and I revised really hard for my resits. I’d attend a day centre, go to a yoga class there and then revise solidly for three hours every day. It was one of the best moments of my life when I turned the exam paper over and realised I could actually answer the questions. I’d always been told I had a bright future ahead of me, which is probably why it was so easy to believe I was God! But when I came out of hospital and restarted university, it was like having to learn how to live again. The world seemed massive and I seemed infinitesimally smaller than I had ever been before. I had to fend for myself, do my own cooking and shopping and it felt like I’d never be able to do it. My sleep pattern was terrible but now I had to get up for 9am lectures. I was still struggling with the work and found it quite difficult. Previously my saving grace had been that I had a good memory, but the medication killed it and to this day I have to work really hard to get through. I also needed to get a whole new group of friends, though there were still some people there I’d known in the first year. Some of my friends admitted to me that they thought I was really selfish when they knew me in the first year, but I’d say, “I was having a psychosis, what do you expect? Part of that is thinking you’re the centre of the universe!” Through hard work and determination I managed to get my degree. I’d come so close to losing it all that I wasn’t going to let it happen again.
At the time I thought I’d quite like to become a psychologist but didn’t really know what was involved. My lecturer said not to bother trying to get into clinical psychology because it’s difficult, but I definitely wanted to work in mental health. When I left university my dad found an article in The Times about South West London and St George’s Mental Health NHS Trust, which was specifically looking to employ people with mental health problems as they had something different to offer. A support worker post came up in the Trust so I went for an interview and they offered me the job! Once I started, I was supported by the user employment programme which supports service users working in the Trust. Then I had an accident on my moped and needed to be redeployed within the Trust. So somebody decided to offer me a secondment into the user employment programme and I ended up working there for six years. The job involved promoting employment rights for people with mental health problems. I had to do lots of presentations and public speaking and go to meetings and consultations to advocate for service users’ rights. I also had the opportunity to talk about my own experiences. The role meant I was working closely with a psychologist who was really kind to me and got me thinking about my future career direction. She encouraged me to do an MSc in Occupational Psychology, which helped me to learn how to study again.
At the time, the mental health charity Rethink was looking for someone to share their experiences of using services so I started working as a media volunteer for them. I did loads of media work and appeared on Richard and Judy, GMTV with Lorraine Kelly and Newsnight talking about mental illness. People used to say I was brave for appearing in the media, but I didn’t think so. Working with Rethink also gave me the opportunity to train people involved with mental illness and I trained psychiatrists, drug reps, the Metropolitan Police and Girlguiding UK. I also went to conferences all over Europe – Hamburg, Lisbon, Brussels – talking about my mental illness.
When I was working at the Trust I used to sit on the user involvement panel for the clinical psychology training course at the University of Surrey. This brought together clinical psychology trainees, tutors, local service users and carers to give their input on the course.
One day I happened to mention to a tutor there that I wanted to be a psychologist, so he suggested I apply for clinical psychology training. He said there was nothing wrong with my experience and that they were trying to open the course up to people from non traditional backgrounds. I got on the course and finished my doctorate in 2008. Since then I’ve been working at the South London and Maudsley NHS Foundation Trust in their psychosis services which are very dear to my heart. This is mainly with people who have psychosis and other problems such as depression, anxiety or drug abuse. I use cognitive behaviour therapy, schema therapy and some psychodynamic ideas. I’ve started to do some work around the Trust in other user involvement areas, trying to encourage other service users to get involved through the user involvement register. Over the past year I’ve also been helping the British Psychological Society produce some guidelines for psychologists on service user involvement.
As both a clinician and someone who has experienced psychosis, I get to see things from both sides. Most of the people I work with don’t know I’ve had mental health problems and having only been qualified for two years, I don’t know if I’m confident enough to tell them. I don’t know if I’d be doing them a disservice because I can never know what someone else is experiencing and don’t want them to think my mental health is more important than theirs. But if a member of staff says something I don’t agree with, I’m not afraid to challenge how they came to that conclusion. When I was a trainee, I was in a meeting about somebody who had come into the service for the first time. I remember the psychiatrist saying that this person couldn’t have severe mental health problems as they were working as a manager. I just thought, how can you say that?
After the huge episode where I went completely over the edge I’ve stayed really quite well. There have been wobbly times when things got stressful but I’ve managed to keep it under control. A couple of years ago I decided to change medication because I wanted to lose weight, but the side effects were hideous so I decided to stick to the olanzapine from then on. I haven’t had a major episode since.
Making recovery a reality
When I was in hospital, I was always quite hopeful that recovery was a possibility but it really began when I went back to university and challenged myself to learn. Things continued to improve when I started working and could actually use my own experience of mental illness to help other people. The thought I’d had years earlier that I was experiencing something massively important actually turned out to be true. I’ve learned something from my experiences and I don’t have to be ashamed of what I went through.
I don’t know if you ever get to a finishing point where you can say you have recovered, it’s more of an ongoing journey.
There may be times when things aren’t going well and you get yourself in a trough, but you have to dig yourself out and move towards where you want to be, even if you don’t actually get there. There is a whole trail and tangent of experiences that have led you to wherever you are in life. Recovery is about not becoming jaded but looking to the future and accepting that there are interesting, new things to come.
Having people around you to support you on that journey is important. My parents always had faith in me, which I finally started to have too when I went back to university. The psychologists I met in hospital and at my first job both believed in me and helped me to achieve. Finding my life partner and getting a flat has been massively important in my recovery. Taking responsibility for my life has also helped. I’ve worked really hard to get where I am and that makes me feel quite positive.
If people with psychosis think recovery is a myth then it’s probably not going to happen. But recovery is possible and it can happen. If they have hopefulness and optimism then it is more likely to happen as well.
Hope has been massively important in my recovery – huge amounts of probably unsubstantiated hope. If you are not even a little bit open-minded to hope, you won’t get out of bed in the morning. When I took the overdose I was hopeless, thinking there wasn’t an area left in my life that wasn’t untainted by the horrendous thing that was happening to me. But you need a little bit of hope to make you do things. Even when your job is going badly and your house is about to be repossessed, if you have hope you can use it to infect the other areas of your life.
My hope for the future is to carry on working where I am because I love the Trust and the client group. I also hope the service user guidelines I’ve been working on get a good reception. When I thought I was God I thought I wanted to cure poverty and disease. I know I can’t do that but I can use my experience of surviving psychosis to help other people find their way through. Helping others is the icing on the cake for me, but when other people do well it also reinforces to me that recovery is possible.
As a clinician I know a fair bit about psychosis because it’s one of the most common mental illnesses and has been widely researched. Psychiatrists and academics used to think that therapy with people who had psychosis couldn’t be successful because they are just too chaotic and nonsensical. Psychosis was thought to be simply rubbish from your brain. But I can’t just dismiss something that is so integral to somebody’s worldview by saying it’s just a product of the imagination. Our imaginations are a product of us. Delusions and voices do actually have some basis in our experience and inner thoughts and fears. For example, my thoughts of being God were all really rooted in my experiences of feeling different and not wanting to accept my vulnerability.
Quite often it’s the injustice of not being believed or taken seriously that hinders people’s recovery. Sometimes I do marvel at the extent to which people ask for help and simply get brushed aside. If we dismiss people because they are mad or have a sensory impairment, we are missing out on a whole universe of human experience which is part of life. The greatest injustice is when people don’t get the opportunity to speak up for themselves. Someone I used to work with said it was his job to advocate for what he called “the inarticulate service user”. He said everybody should have somebody who stands up for them, but not everybody does. The greatest kindness is when we go the extra mile to help someone.
Mental illness can happen to anybody. I was really shy, but down to earth and sensible, when psychosis came out and tried to eclipse my life. I didn’t want it to be the end of my life, though it very nearly was. Psychosis is terrifying but it doesn’t mean you have to be on your own. If you can listen to other people’s stories or open yourself up to other people’s reality, not get rigid in your own mind, it doesn’t have to go bad. People are likely to be afraid of psychosis but it doesn’t have to win. I’d hope people would look at my experience and see that it takes a lot of help and support to decide where you want to go with your recovery.
Mental illness doesn’t make you a bad person or mean your life is over. It’s not something people need to be ashamed of or hide behind. It can be something to celebrate that can make your life unique and different.
Everybody has intrusive thoughts or things that frighten them. The more we pretend it’s everybody else, we are buying into the lie that you are weird if you have a mental health problem. I don’t think mental illness makes me special. It’s just a natural part of life and can be a very profound and creative experience.
Big issue - Service provision
Big issue - Service users
Sept 23, 2000: Going undercover - When Rufus May was a teenager he was diagnosed with paranoid schizophrenia and told he would have to take medication for the rest of his life. He since came off all medication and is now a clinical psychologist with a message
Thank you for giving me hope
Kathy Donald, student, Cambridgeshire
Date: March 24, 2011
What a fantastic article. I too suffered a psychotic episode at university and was diagnosed with Bipolar Disorder.
Last year there was an article about my experiences in the Daily Express, and I am now about to start a job in the NHS as a Peer Recovery Worker.
Since being ill, I've wanted to have a career as a clinical psychologist, but thought that it wouldn't be possible due to my condition. I can't express enough how much Emma's article has inspired and encouraged me.
Thank you so much for giving me hope.
Turning point was moment of impending death
From: Daniel Relf, United States.
Date: April 19, 2011
I've been recently diagnosed with psychosis. Although it is medicated I still find it hard to come to terms that the brilliant things I was experiencing was illness. Infact, although I agreed to take the medication, I believe I'm stopping something important from happening.
Your story is very insightful and I can sympathise completely.
My true cure is knowing what I've seen and learnt. My illness is the fear of forgetting it. Some days I feel like I've shot myself in the foot by agreeing to take the meds. I believe your turning point was the moment of impending death. In that moment you do indeed become God. You are alive not because your mum and dad created you, but because of choice. You chose to ring the doctor. In that moment you become more powerful that you ever could have been before.
Your work must feel like helping people make that choice every day.
All for a good purpose
From: Augustina Hutchinson, student nurse/social work, Southbank University, UK
Date: August 29, 2011
Congratulations on your achievement Emma, a very moving story that will serve a good purpose for service users and health care-professionals alike.
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