Louise Gillett first experienced psychosis at 19, and after a second episode aged 25, she was diagnosed with schizophrenia. Following a third episode, she recovered and has been mentally well for twelve years. She wrote her story in ‘Surviving Schizophrenia: A Memoir’ available on Amazon as an eBook or Paperback.
Tell us a little bit about yourself
I am a writer - I love saying that! I am also a wife, a mother of four children, and a happy, fulfilled and busy person. I was given a diagnosis of schizophrenia when I was young, which defined and limited my life for some years, but which now is very much irrelevant to the picture of who I am.
When did you first become unwell?
I suppose that depends on how you define mental illness. I look at it as emotional distress, and I suffered that from a very early age indeed. I was a very anxious child - due to external factors - and that anxiety, fed by an erratic lifestyle, and by the fact that I smoked cannabis from a very young age, led to my first hospitalisation at the age of 19. I am 44 now, so that was quite some time ago.
How did your illness affect you at first?
I was in my first year at University, studying law. I was nervous and panicky, but I'd given up smoking cannabis by then, and I just about coped with life. I enjoyed my studies. But then I got a crush on a fellow student, who didn't return my interest, and that didn't help my state of mind. I completely embarrassed myself. After that I couldn't seem to concentrate much, or hold a normal conversation even with friends. I couldn't relax. The pressures of life were just getting too much for me.
Then, in the Easter holidays, matters deteriorated. I'd just left my boyfriend, who I'd lived with since I was sixteen, so I was homeless. I was sleeping (although not sleeping much!) on my sister's floor. And I was often hungry, because my mental state was deteriorating, and I was not really capable of looking after myself. I lost a lot of weight. I had given up smoking cigarettes a couple of years before, but started again, quite heavily. I remember fainting on one occasion, cigarette in hand, and burning a hole in my sister's new hallway carpet.
I also started smoking cannabis again - which had always made me paranoid. I began to imagine all sorts of things, for example that I was being watched by the national security services, and the paranoia just would not recede.
Eventually I was sectioned - I don't think anybody could figure out what else to do to help me.
How did you feel about your diagnosis at first?
I shattered under the weight of the diagnosis. I was not told of it after that first breakdown. After I got out of hospital I went back to University and finished my degree - it was never easy, but I pushed through, because the one thing I had always been sure of about myself was that I was gifted academically, and so it was important to me to gain my degree, to have concrete proof of my intelligence. I was still overcome by nerves though, which crippled me in almost every situation. But essentially I thought of myself as normal, although I knew that I was a very anxious person.
When, after my second breakdown, at the age of twenty-five, I was told that I had schizophrenia, my sense of who I was completely disintegrated. I felt that I had nothing to be proud of any more. Eventually I claimed disability benefits, was given a housing association flat, and became quite comfortable materially - I was not well off, but I was no longer concerned for the practical aspects of my survival.
I remember, when I was about twenty-seven years old, telling a mental health nurse who was helping me fill out a form for Disability Living Allowance that I felt guilty about collecting benefits when I was able bodied - she reassured me that I was entitled and I put my doubts to one side. I accepted the fact that I was no longer capable of leading a normal life, because I was a 'schizophrenic'.
How does your illness affect you now?
Not at all. I take no medication, and I have no symptoms of mental ill health whatsoever. I have taken no medication for more than twelve years now. I had CBT a couple of years ago, with a very good therapist, and for the first time in my life I discovered what it was like to live without anxiety. Now, if the anxiety creeps back, I spot it and tackle it quickly. And of course, I am always aware that I need to look after my health - mental and physical. So there are basic aspects of my life that I take very seriously - I make a huge effort to stay calm, to eat well and to sleep well, and to exercise. I need to look after myself, because I have a family to look after - a lot depends on me!
How do you feel about your diagnosis now?
I see it as a learning experience. I don't see that my pathway to wellness could have been different. I had to accept the schizophrenia label, to learn what it did to me and to my sense of self, and then work through it all and come to the understanding that it was a complete nonsense. In fact, I see now that I was never 'schizophrenic' at all, and in my opinion the people that impose these labels would not do so if they fully realised the harm that they caused.
I don't resent anything that happened to me, but I do resent the fact that the label of schizophrenia is still given to young people today. I know the damage it did to me, and I want others to understand that they should not identify themselves as 'schizophrenic' - there are many better ways to understand and deal with their emotional and behavioural problems.
I also think that there should be official recognition that full recovery, with or without medication, is possible.
What helped you to recover?
Recovery has been a long journey, but it started with just a feeling that there must be something more to my life than the very limited existence I had come to accept. At that time, I was living in a YMCA hostel, on benefits, attending a day hospital. I participated in no social activities. In the terminology of Alcoholics Anonymous, I had reached my personal 'rock bottom' - had become as low as I could be, and the only way now was up.
In practical terms, having a routine has helped. Once I decided that I needed to change, I started to eat better (and less) and to exercise. I had to practice self-discipline - by swimming daily, for example, I improved the condition of my body and mind. Eventually, I found paid work.
I think it is important to keep busy. Having a family of my own has helped me most of all - knowing that I am loved and accepted on a fundamental level, and that I have a deep sense of responsibility to those I care for, has given me a place in the world, and made sure that I lead my life as well as I possibly can.
A lot of my problems were caused by not listening to myself - for example, I knew I should not be smoking cannabis, but I did it because I did not know what else to do, or where else to go if I broke with my set of friends. I listen to my own instincts more now - and I have support when I need it, from good friends, from my husband and in the very pleasant company of my children.
Was there any treatment that made you worse?
The whole hospital experience was dreadful. Being forced to take drugs was physically and emotionally traumatic - I will never accept that this was necessary or therapeutic. If I ever got ill again, or one of my relatives did, I would avoid NHS mental hospitals like the plague!
Having said this, I know people who have been helped in the same hospital that traumatised me. I think a lot of this is to do with attitude - with being open and willing to accept help. I also know that medication helps some people, and that they are happy to take it for the rest of their lives rather than risk becoming ill again.
What do you do nowadays to stay mentally well?
The same things that set me on the road to recovery - I eat well, sleep well and exercise regularly. Try not to put too many demands on myself. Spend time and effort building up a social network, have fun. Enjoy life as much as possible! I look after my relationships. And I nurture my sense of self - I constantly work on things like fostering a sense of belief in myself.
It could be easy to slip back into negative patterns of thinking, so I stay aware of my thought processes and I use this knowledge to consciously stay positive.
Any advice for others who are, or who have been, ill and for their friends and families?
My advice for others who suffer from mental illness, and for their loved ones, is never to give up hope. Recovery is always a possibility, even in cases that seem the most intractable. I would advise people to look for support on the Net, to educate themselves about the subject of mental illness. Not to buy into the medical myth - all this talk of brain disease and chemicals gone awry makes people feel hopeless about the possibility of change.
Above all, people should be encouraged look at their problems in a human way. In Agnes' Jacket, Gail Hornstein quotes Frieda Fromm-Reichmann, who 'insisted schizophrenia was a condition of abject loneliness caused by early experiences of trauma that could, even in its most severe forms, be healed through relationship'. It's true. So never be ashamed of what has happened to you - reach out to others, find support, give support, keep busy, work towards wellness. And when you get there, spread the word of your recovery!
Louise's blog is at http://schizophreniaattheschoolgate.blogspot.co.uk and she can be found on Twitter @Louise_Gillett
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