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‘The colour drained out of my world’
A personal account of living with schizophrenia, from a woman helped by Rethink Mental Illness, a charity supported in this year’s Telegraph’s Christmas Appeal.
On a family walk through Hackney in London about six months ago, Alice Evans began sufering hallucinations. ‘I was having visions,’ she says. ‘My uncle and aunt were walking along the pavement normally, but my experience was unreal. All the buildings appeared to be collapsing, with ivy growing quickly out of the rubble. It was very disturbing. I was seeing and hearing these extraordinary things that they clearly weren’t.’
Alice, a 38-year-old artist and photographer, sounds remarkably unperturbed as she recounts the incident today, seated in the living room of her Camden home, which has a cheerful glow, thanks to fairy lights strung across bookcases. Gentle, thoughtful and empathetic, she understands very well that such a horrifc experience must sound frightening to others.
But hallucinations, hearing voices and feeling panicky and paranoid are not unusual for her: Alice was diagnosed with the mental illness schizophrenia 10 years ago. And despite medication, psychiatric help and constant support from family and friends, Alice knows she must accept her unusual state of mind.
‘Sometimes it feels like I am in the flm Gaslight [a 1940s mystery-thriller in
which a woman is tormented by her husband into paranoia], but I know that things do shift back to normality,’ she says. ‘You could describe the experience as being like the moment you wake up from a really vivid dream, and for a few seconds you feel as though you are still in the dreaming reality. Only for me, of course, the images are usually nightmarish.’
Sadly, however, public perceptions of schizophrenia tend often to focus on people’s fear of suferers and what they might do to others, rather than on sympathy for the plight of schizophrenics themselves. One in every 100 people will go on to develop the illness, and although a diagnosis of schizophrenia does not mean that they have a split personality or that they are likely to be violent, Brian Dow, director of external afairs at Rethink Mental Illness, which is supported in this year’s Telegraph Christmas Charity Appeal, admits that the public are not always sympathetic.
‘There is a myth of aggression,’ he says, ‘but such incidents are rare. Thankfully, the public perception is gradually changing. However, schizophrenia is still used as a term of abuse. We wouldn’t use cancer as an insult; it is just not acceptable to use illness as abuse. Think of the harm that does to people who are just trying to get better. This prejudice on the part of the public adds to the feelings of isolation which are also symptomatic of the illness.’
Certainly for Alice, the frst time she began experiencing signs of schizophrenia she did start isolating herself through fear of what was happening, and an accompanying depression. At age 20 she was studying drama at a northern university, and she admits she was ‘under a lot of stress’ at the time. ‘I had lastminute essays to write, while working at three jobs to support myself. Work was piling up. It was pressured and I wasn’t sleeping.
‘I started hearing voices. I didn’t realise that I was isolating myself, but I wasn’t talking to friends or family. I can barely remember the period now. I felt paranoid, that things were being moved about. I was hearing and seeing things that weren’t there. I found it hard to make decisions, and one day just sat on a bus going round and round, unsure whether to go to work or go home. Decisionmaking is very difcult when you are bombarded with strange thoughts.’
Friends contacted her family in Devon and persuaded her to head home, where she was able to fnish her degree by correspondence. ‘I knew something was wrong with me. I felt absolutely terrifed most of the time, too frightened to leave the house.’
‘The work does show the experience of psychosis in some ways. That feeling of being inside and outside the thing’
For the next fve years, Alice sufered depression – ‘The colour had drained out of the world’ – and developed an eating disorder.
With the help of her parents and GP, she received some support from her local mental-health services but there was no diagnosis. She was prescribed antipsychotics (the side-efect of which was her gaining 10 stone in one year), saw a psychiatrist every six months, and was referred into hospital for observa- tion when her symptoms escalated. However, inadequate mental-health funding meant treatment was rationed. ‘As soon as I was functioning, I’d have to go home. They could only treat the most acute patients at any one time so my care was episodic by default.’
No one knows what causes schizophrenia, although it may be triggered by extreme stress. Other factors could include brain chemistry, genetics, birth complications and social factors such as an urban upbringing. There is no cure, though therapies are available and improving, says Brian Dow, but there is a lot of progress to make.
‘The quality of medication is generally improving,’ he says. ‘But it often has side-efects – such as weight gain, which is particularly frustrating. Not only is it bound to afect your confdence and desire to live a new life, but we fnd patients may develop type 2 diabetes afterwards too.’
He adds, ‘Early intervention can make a massive diference to the efectiveness of treatment, but there is not enough research being carried out. Only fve per cent of the national research budget goes on mental health, which is tiny compared to the impact of these illnesses.’
As part of her own attempt to get back on an even keel, Alice joined a local theatre group where she met her best friend, Tristan. In 2005 he persuaded her to move to London with him, as he began a languages degree. It was a daunting idea, but she admits, ‘Devon was isolating, school friends had moved on and got married, and I really needed other like-minded people around me.’
She adds, ‘I didn’t feel brave; I think everyone who sufers mental-health issues is brave. I’m no braver than someone who can’t get out of bed because of depression.’
When she began a degree course at Chelsea College of Arts, she was ‘absolutely terrifed’, but quickly made good friends and enjoyed the course. ‘It took me a while to be open about my illness, but eventually I didn’t have a choice. I had a breakdown at the start of year two and began hallucinating
again. But everyone was supportive, as was the university, helping me to access health care.’
Around this time Alice was fnally given the formal diagnosis of schizophrenia. ‘I wasn’t particularly surprised. And I wasn’t scared of it – I never made too many judgments about other people anyway. As an artist, if you are too critical of others it stops you working.
‘Of course, I understood the stigma this illness carries, but I was slightly relieved. I knew where I stood and had something to fght against.’
In London she was also able to see the same doctor on a monthly basis, and this time found it easier to get back to a place of equilibrium. ‘Lots of creative people in London are supportive of each other,’ she says.
Another constant source of aid was Rethink Mental Illness, which her mother had frst contacted some years before. ‘Mum had found it supportive for her – parents and family can be isolated too.’
Through Rethink Mental Illness, Alice was able to get help in setting up a business. She supports herself through teaching at the university and photography. Her own art – photography, video and painting – explores the artifce of an artwork’s construction; manipulations that test our perceptions of reality. She is editing a short flm about stretcher bearers in the First World War (who were based at the building which now houses Chelsea College of Arts). It will be shown in London in December at a special screening, and she hopes to attract funding for its development into a full-length feature.
Has her art been afected by her illness? Alice says, ‘The work does show the experience of psychosis in some ways. That feeling of being inside and outside the thing, that half-dreaming state, when skin feels more porous than it actually is, which makes you feel vulnerable. But there is no doubt art is certainly essential to my wellbeing, and I need to be among a community of artists.’
Alice still experiences hallucinations and paranoia most days, which she uses cognitive-behavioural therapy to help with, and she sees a therapist once a week. But she becomes severely unwell two or three times a year, and when that happens she gets referred to a crisis team, rather than ending up in hospital.
‘That’s good and bad – partly there aren’t the funds, but also current thinking is to keep patients at home where they may feel more secure and family are close by. I don’t tend to know when I need help, but friends may suggest it.’
She reserves her greatest frustrations, though, for others who may not be as fortunate and who live on the streets, without a support system to protect them. Alice is understanding too of the public’s fear.
‘People have been negative to me but I don’t blame them – you can get frightened of others when you don’t see the human side to them.’ But, she adds, ‘Even someone acutely unwell still needs to be treated with dignity. Psychosis is much more frightening for the person experiencing it than for the one watching.’
Rethink Mental Illness (rethink.org) is one of three charities supported by the Telegraph’s Christmas Charity Appeal 2015. The others are Care International and the spinal injuries charity Horatio’s Garden. To make a donation, visit telegraph.co.uk/ charity or call 0151-284 1927
‘It took me a while to be open about my illness, but eventually I didn’t have a choice’