Personal Accounts of Mental Illness and Beyond
Edited By Zoe McIntosh
Key Themes: short stories, recovery, empowerment, activism, user-groups, mental health services
Zoe McIntosh’s book is based around sixteen recorded conversations with people who have volunteered to open-up about their experiences with serious mental health problems. Their accounts illustrate the varying ways that people cope with mental illness. Zoe hopes that through writing this book, people with mental illnesses will feel that they are not alone. Uniquely, she offers an insight into peoples’ lives which challenges the more traditional perspective of the medical profession. In this way, the book is able to tackle the stigma which surrounds mental health issues today.
About the Author
Zoe McIntosh is a mental health worker and writer. She was born in London in 1975 and spent her childhood years in Holland. She has lived in Oxford for the past ten years and is due to begin studying for an MA in World History in September at Sussex University. She wrote From Goldfish Bowl to Ocean in order to show how some people deal with mental health problems.
Bob is fifty-two years old and has been coping with depression and anxiety for over twenty years. He describes himself as ‘stuttering and shy’ and with low self-esteem. When I met him, he was friendly and open in talking about his experiences. He has a degree in housing and is currently doing voluntary work for different organisations in the Oxford area.
I do suffer from paranoia but I think to a certain extent that it’s justified. I think some mental health workers ‘depend’ on certain members – or patients, or clients or whatever they call people who use their services. They perhaps can’t accept that these people are moving on, or moving up or moving out. Or don’t need them any more. I was talking about this very thing with a schizophrenic friend yesterday evening. The topic came up and (laughs) we agree. He said, ‘There’s some who can’t believe you can get to and from the city centre by yourself.’ Now these are sweeping, libellous generalisations but over the past five years, despite having had this type of conversation with one of them, they still treat me as a patient. I went to an allotment fete in August. Great day. I met a worker from Acorn who I’ve known since 1988 and when I saw her, the first thing she does is tell me where their stall is, and I thought, ‘I don’t want to know where it is. I’ve not been to the centre for months. I’ve worked for them, driving.’ It really annoyed me. So that’s one aspect of my particular situation.
I started at Oxfam on the road to decent paid work. Stuffing envelopes in the packing area. There may be some staff who know me as someone who works in the packing department. That particular department is for disabled people, although I’ve done quite responsible clerical jobs in other departments. I think they’re a bit cliquish anyway up at Oxfam. Another libel. (Laughs) I only spend one-and-a-half hours there per week now. In fact, it’s down to every two weeks. Two weeks in a month. It’s because of illness that I’ve cut it down. In fact, I’ve been encouraged to do more, which I’ve been nervous about taking on. I presume my colleagues must socialise with each other, with all the centres and office staff that there are. People who work in mental health are not allowed to meet members outside of their work. Some are even stricter. None of the workers who have contracts are allowed to have a sexual relationship with the members. Which is because of the law and exploitation. I can see some sense in that.
To put it in a wider context, though, if it’s part of the constitution, or culture, or ethos of mental health organisations to encourage users/members to move on, including working for them or working on the mental health scene, then the social aspect is a problem. You feel you aren’t being accepted as a colleague, that you’re still regarded as a member of a drop-in centre. The more one is – I’ll use quotes – ‘rejected’ by them, the more one is kept in the circles of one’s – quote – ‘loony’ friends. I’ve nothing against loony friends but you’re … (pause). I just don’t want to be on the scene anymore. I will choose who I want as friends, however they’re defined.
Oxford is not the friendliest place anyway so trying to break out of that scene, those circles; well it is still galling in a way. All you’ve got after five years is the friends you had before you started to do other work, most of whom you’ve met on the mental health scene, as members and users. And it’s a big problem. I mean mainly because Oxford is so unfriendly. It’s hard to make friends, especially not working full-time anywhere. So I think that’s a problem, a general problem for any organisation wanting to use our expertise or experience in being a service user. There still seems to be a bit of apartheid. You know, if I were to move to a different city, I’d try not to be a member of a mental health drop-in centre, so that it would be a clean sheet. But here in Oxford, well it’s impossible.
I wouldn’t say I’m OK. That’s the other side of the coin. I mean we are told that it is not them and us. That people are not completely ill or completely well, it’s not black or white and so it’s bound to be somewhere in-between. However you define yourself. Whichever door you walk through. I mean whether you walk through the patients’ door or the doctors’ door. Well, I have anxiety and depression, and some physical problems. I started work again – that’s a sign of getting better, of recovering – about ten years ago. Stuffing envelopes for half a day. Mainly through invitation by different employers, I expanded that to about sixteen hours a week or more. Of course, if that were found out by the DSS I wouldn’t qualify for incapacity benefit and that is another aspect of this sort of journey. I suppose it’s another sign of progress anyway. The peak of work achievements was about a year ago but unfortunately, I was made redundant from the second-best job that I had. Well, it was all tailing off anyway and, in fact, I walked out once I realised what was happening. Work can be great. It can be great company; the feeling that you are doing something useful; the responsibility and the achievement. I suppose it’s tangible in what I do: posters, flyers, newsletters, being responsible for people when I’m driving. Also, I know it’s good in the longer term to build confidence, experience, a CV. I was a manager for five years. I’d like to get back to the sort of person I was then. Sometimes the stuff I do can be a bit boring and I end up thinking, ‘What am I doing this for, when I can do this or that and I used to do the other?’
One of the cleaners said, about what was a voluntary job, ‘What, couldn’t they afford you, Bob?’ (Laughs) Which is quite funny, but quite cruel as well. I mean you’ve got to be pretty bad to be made redundant from a voluntary job. They didn’t even pay my expenses. I think it was personalities. Different people moved into the office in which I worked. Including a new boss. But that’s life, I suppose. It helps a great deal, though, to go to work. I must confess that I found it hard to entertain myself, as it were. I live on my own in a bedsit in an area that’s unfriendly, and I’ve not made any friends there. Well, I’ve made one friend in the house and that can make all the difference, but he works full-time. I don’t want to bother him too much. So I spread my work over four days. Friday is my free day. I deliberately set it up like that in order to be working when the drop-in centre that I used to go to is open, so I was not tempted to go back there.
I don’t want to go to the drop-in centre on principle. I realise I’ve got to make it, well, perhaps not on my own but without people paid to help me. Paid to be nice. Paid to listen. So-called ‘befriending’, when I know that they’re not allowed to meet me outside of their work. That’s not friendship at all, that’s part of a job. It’s not real life. It’s not what the world is like. You’ve got to make it on your own in that sense. So those are the reasons. A friendly acquaintance of mine in a similar relationship with the drop-in centre said a few years ago, after he’d stopped going, that the place was great at getting you to a certain level and then keeping you there. So it’s very interesting. I still don’t think I’ve told any of the people who work there that. I’d like to. What eventually clinched it was this job that I eventually got made redundant from. There was a new company that took over, which meant computerisation and all that sort of stuff. They said they would train me on the computer to do the job I was doing. I thought, well, if they’ve got that much faith in me, then that’s great, I should have some faith in them. Around the same time I can remember sitting at Acorn in the afternoon, having had a so-called ‘chat’ with a worker. It seemed that we were allowed one ‘chat’ a day, which I suppose is fair enough. I was sitting there looking around and thinking, ‘What have I got in common with most members here, except problems, and being ill?’ Very little positive or neutral, or indifferent. In other words, ‘Why am I here?’ It was useful to talk with a worker. Or literally chat with workers. Other than that, I had to ask myself the question, ‘Why am I here?’ Those two things came along around about the same time. That was when I re-jigged my week so that I wouldn’t be tempted to go back again.
I think I’ve come to realise that what’s useful, what some of us need – people in recovery or perhaps, sadly, getting worse and going downhill – is a very low level of support. Something that’s available if you need it but you probably won’t. I mean, I’ve been to the Samaritans a few times in the past five years. As a deliberate alternative to going to a drop-in centre, because I didn’t want to go back to that. So in sort of, broader, general terms there’s a need for that, for a lower level of support. This is the first time I’ve thought about it like that. I mean the encouragement, the empowerment, is there from certain individuals. I’ve benefited enormously from one of them and I thank them still. I feel I need encouragement in ‘developing’. Yes, I mean I’m happy here and in other forums to describe myself as ill, mentally ill, but I know there’s more I could do and can do, did do. How do I define myself? It depends who’s asking. How I feel at the time. I’m certainly a lot more than a mentally ill person, a ‘patient’. Because as I’ve said, I’m a driver, the most responsible job I’ve ever done. I drive people, not parcels. DTP operator. Editor of a newsletter. Unattached … childless. Poor. A bit intellectual, a bit academic but can be quite practical. I was mending something the other week, so yeah, I suppose I can be quite practical. That’s good.
I’ve travelled a lot and I recently went to Paris. The trip was a prize. I found it very nerve-racking but I’m so glad I did it. I had all sorts of fears, including practical ones, because of physical problems. The best part of it was that there was not a mental health worker in sight. Or if there was, they weren’t in that role. I was a bit panicky and clingy the first morning, and asked two people if I could go with them into town because the hotel was in the suburbs. You had to catch a bus and then a train. I have an obvious stutter and so I asked to accompany them. As I was saying earlier, I didn’t need developing as such but encouragement to develop. Anyway, I latched on to these two to help me catch the bus and then change and catch the train. I got off at Notre Dame as they suggested and they carried on. After that I did do it all by myself largely … (pause). Which in a way is pathetic, given that I’ve travelled by myself across the States. And I’ve hitched to Greece. But things like that were all before I was ill. Since I’ve been ill … well, I did hitch to Amsterdam, but I didn’t feel as nervous doing that. I don’t know why but going to Paris felt like the biggest achievement of this sort. I’d say I fell ill nineteen years ago. I was travelling in Ireland. I’d been going through some funny states at home where I was in my last year at Oxford poly doing a postgraduate certificate. I was having counselling every week there. I was in some pretty bad states, quite frightening at times. I’d done my ankle in, in England, but I’d sort of persevered and that made it worse. I had to see a quack in Dublin because I was literally limping. We ended up changing our plans from hitching to going by train. I suppose I felt like I was a burden to them. I decided to stay in my tent while they went out. I was having funny ideas while I was in there. Of fire and flames and being burnt, in the tent. It was pretty nasty. Shortly afterwards they went off again and did something else by themselves. I may have been hallucinating. I can’t really recall. I’ve not really talked about it in such detail before. But again the physical symptoms and things were there and I definitely couldn’t cope. Especially because of this bloody ankle, my Achilles heel. I would call it a near breakdown that I was going through, or heading for. I was due to meet them at the station to travel, say, westwards or southwards. I decided to travel eastwards and just go, just sort of withdraw from it all. Interesting. It brought things to a head. Certainly, I was suffering from anxiety or over-anxiety. Part of it, although I may not have realised it then, was being away from home and safety. If you are hitching or even just travelling away from home, you’re poor and you’re camping. That’s all a lot of effort. Having to cook for yourself and things. I’d been to the States and Mexico in 1980. The States was not half as dangerous then as its reputation. It was a place that I’d wanted to go to since 1969, on hearing a song called America by Simon and Garfunkel. So that was a great ambition finally achieved and it was a holiday of a lifetime. It was travelling, not a holiday. Trying to find work. I’d read On The Road by Jack Kerouac twice.
I probably had more money in the States as well. You don’t have to make choices between making your foot worse and catching a bus. You just catch the bus. In Ireland I’d suffered physical injury. This literally makes you more vulnerable. And pain. Physical pain. Also, I’m wondering about these two friends. Of course they were good in that they’d changed their plans and it involved spending more money, going by train rather than hitching. But to be honest I felt a bit let down by them. I was actually jealous of them going off by themselves while I was having a rest day. I did have a very bad irritable colon at the time. I was going to the toilet about seven or eight times a day, which, again, when you’re camping causes practical problems. You feel as if you’re drained, weak, not physically well. I have what my acupuncturist calls ‘attacks’, which include feeling very sleepy in the afternoon. I’d had them on and off for five years or so but they were getting more frequent then. So I was even less with it in the afternoons. I do have plans for the future. It tends to be the day-to-day, day-by-day sort of thing but I would like to live with someone. I think I’m too old for children now. I would like to end up with average income. That would be fantastic. An average graduate income. I would like to be out of debt. These aren’t plans, I suppose, these are wishes. But … (pause) a decent home, however I interpret that. I realised this week that it’s a bit pointless aiming for perfection in life, and that life is just different levels of imperfection. If I could think a little more on a shallow level and in the short term, it might perhaps be better than thinking deeply and in the long term as I do. Too much of that really. I’d like to survive at Christmas. (Laughs) Those are plans. A decent job. When I was in Paris at La Place de la Bastille, I was trying to pluck up courage to ask for a cup of coffee in a café. I got really annoyed at myself and was determined that I would not let fear rule my life and that I would not live regretful of things I hadn’t done. I had to do sort of anxiety management thinking, say to myself, ‘Oh all right then Bob, you’re nervous. So be it. You still want to do that thing. You won’t have the opportunity after a day or two. There’s no one here to help you.’
I can remember walking around the outside of the roundabout in front of the café, and thinking, ‘Come on Bob, for God’s sake.’ Jesus Christ. What does it matter if you fuck up, at least you can get a cup of coffee. (Laughs) What’s the big deal? So I did it and it was great. It was very valuable. Have I mentioned my acupuncturist? I’ve been having it for nineteen years. I think that’s saved my life on more than one occasion. I swear by it. It’s about energy flow. Called “Chi” energy. Which is the same Chi as in Tai Chi. Shiatsu is pressure on acupuncture points. It changes the energy flow of a particular organ or emotion. It’s all a bit airy-fairy and intangible but it’s worked for umpteen thousand years. With complementary medicine, it is a partnership. You can’t just take pills or get an operation. Or get better. You’ve got to work at it yourself. (Laughs) So I would emphasise that aspect of mental health as well. Although I know that I could do more. In the end I think it’s down to us. For all the chats with the workers. Or cups of tea. Or cheap meals. Or advice. Or courses. In the end it’s down to the individual to make … well, at that stage it might not even be an effort.