‘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.

The Daily Telegraph - Telegraph Magazine - - NEWS - By Vic­to­ria Lam­bert

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’

Au­tumn and Beach – ex­am­ples of Alice Evans’s pho­tog­ra­phy in which the stag­ing el­e­ments test the viewer’s per­cep­tion of re­al­ity

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