Janey - Interview 03

Age at interview: 52

Age at diagnosis: 29

Brief Outline:

At 29 Janey was diagnosed with schizophrenia. Janey had a lonely adolescence, thinking she 'got it worst than most'. In her twenties things 'blew up in her face', and she was admitted to hospital a lot. She now manages her condition and works for Rethink

Background:

Janey is a mental health trainer, married and living with her husband. Ethnic Background' White British.

More about me...

When Janey was seven, she noticed that she ‘couldn’t get comfortable in her body’ and called it heat stroke. Having had depression since, she thought that this was probably depression. Janey had a lonely adolescence and didn’t really have any friends at school. She would spend hours going for walks to get rid of the feelings inside her. She had talked to her GP about it and was referred to secondary services. Janey felt relieved when she went to university as she felt she could be who she wanted to be. After having had a chaotic first year at university, she attempted to take her own life. Two friends took her to the campus doctor, who in turn referred her to a psychiatrist, but she managed to persuade him that there was nothing wrong with her. Occasionally things would get out of control but she had periods of calm, such as when she was in hospital to have her tonsils removed. At this stage, she was hearing voices but did not tell anyone. Janey then went to America for three years and remembers feeling depressed but not psychotic. When she returned to the UK she became unwell, seeing things that weren’t there, feeling depressed and hearing voices constantly. Janey heard from 4-6 voices, talking to each other about her. These voices were often rude and degrading. She went to her GP and was given anti-depressants when she wanted a tranquilizer. Around Christmastime she took an overdose and was driven to hospital. She was persuaded by a psychiatrist and the registrar to be admitted to psychiatric hospital voluntarily, under the threat of a section. At this stage, she was still on anti-depressants and hadn’t told anyone about hearing voices, so within four days she was out of hospital, but after a month she returned. This pattern of re-admittance became chronic. Janey would see little people, like demons, at her workplace, and once threw a cup at one; this was noted by her colleagues. After a period of time, both she and her husband assumed she was going to improve, but this wasn’t happening. Eventually she admitted to her manager at work that she was hearing voices. After this, but unknown to her at the time, she was given a diagnosis of schizophrenia by her psychiatrists and was prescribed anti-psychotic medication. The first time she heard the diagnosis in relation to herself was when she wanted to get in touch with people who heard voices but had jobs, and her psychiatrist referred her to the National Schizophrenia Fellowship (now called Rethink).

Janey manages her condition with the help of medication, but it has taken a long time to get this medication right, never knowing how it was truly going to affect her until she went back to work. One time she had to sleep on the floor at work as the medication was making her extremely drowsy. Although she is occasionally admitted to hospital, she has developed coping strategies such as making a private space, bringing drawing pencils in and holding onto her belongings in hospital. She has had varying experience of health professionals over the years, and has valued the staff who have taken an interest in her as a person, not just a psychiatric patient, and have enquired about other interests such as her drawing. The staff she has found it more difficult to relate to are those who are unnecessarily controlling and dogmatic about small rules in in-patient wards. She has had good experience of a supportive care coordinator who did what she described as informal counselling. Psychiatrists she has found more difficult as they haven’t always been receptive to talking in detail.

Nowadays she tries not to get stressed, tries to get enough rest, and avoids crowds of people, particularly in noisy places like pubs. In total she has been through 29 different drugs, but does not want to be put onto Clozaril for so-called treatment resistant schizophrenia. She manages voices by tuning in and out of conversations and trying to maintain focus on someone speaking to her. Currently her husband is not involved in her care and prefers his role as a husband as opposed to a carer, having been intensely involved in the past. She prefers to have friends both within and outside mental health. Now Janey works as a trainer, teaching different groups of professionals such as the ambulance services and the police about living with voices. Janey enjoys drawing, singing in a choir, and doing work with Rethink and the Cochrane collaboration.
  Since this interview took place, we have been informed that Janey has sadly died.

Janey couldn't find a 'comfortable way of living', felt a 'nothingness' inside her but her parents thought it was just bad teenager tantrums.

I just found life difficult as an adolescent. I had a horrible time, which was so lonely. Didn’t really have friends. I hated school. Just couldn’t find a comfortable way of living. that just didn’t go away. So at the weekends I would spend hours and hours just walking, just, I suppose trying to get away from what was inside me and of course that never works. ...and I suppose in the end... I just managed to live round it.

 

What was inside you that you were trying to get away from do you think?

 

I really don’t know what was inside me at all that I was trying to get away from... A feeling of black, nothingness. Later the voices.

 

No I really don’t know. Just, just... terribly uncomfortable.

 

Did you give a name to it?

 

I suppose when I was an adolescent, I always just thought, oh I’m one of those kids that’s just, gets it worst than most. And I think my parents regarded it as just really bad teenage tantrums or teenage angst stuff.

 

And so nobody really was that interested in doing anything about it.  

Janey has found that she can concentrate on a particular conversation, or on her voices.

If things, yes, I get voices all time. This is... When I do police training and things like that, they kind of say well how can you do that? And it’s a matter of practise, and you say to them if I wasn’t well enough I wouldn’t be here. So I’m only going to turn up, you’re only going to see me when I’m well enough to cope with what I’m doing.

 

So how do you, when you’re well, how do you cope? How do you manage the voices?

 

I think managing the voices really it’s like, if you’re sitting in a restaurant with someone, and there’s conversation on the next table. You can choose to go with that conversation or you can choose to stay with the conversation you’re in. You can actually say right I’m putting my attention here. For the most part I can do that, except sometimes it doesn’t work, and that’s when I start getting ill again. And I don’t know why that happens exactly.

 

And do you find it easier in quieter spaces and noisier spaces?

 

I’m really, really bad with noise. I really hate anything that’s, that got a lot of. Lot of background noise going on. In fact I find A & E extremely to deal with. And sometimes my GP’s waiting room. There have been times when phones keep going, and in the end I’ve said to the receptionist, “Look I’m going to sit outside. Tell him.” But again there’s a coping strategy. I’ve found a way of, of dealing with it. So, and I actually really, really don’t mind, say if my husband’s away, not talking to anyone for a week. I’m quite happy with that. And I wouldn’t have a radio on at home. I would just have silence. Because it isn’t silence to me anyway.  

Janey trained as a counsellor at the same time as doing some TV work about her mental health.

While I was still a scientist I had actually done the training to become a counsellor, I was so impressed by this care coordinator decided that’s a really good thing to do, so I went, I’ve got a qualification in Person Centred Counselling, and just one Christmas, it was actually over the Christmas holiday I thought ‘right I’m leaving science, I’m going to’ ‘be a counsellor’ and so, I just gave my notice in, worked out my month, stopped being a, a scientist, and, before that I had also been doing some training with Rethink I’d been going with a couple of people and giving the user perspective of being taken into custody by the police on Section 136, and so I had these options, and, the, what happened was that, I was all set to become a counsellor and I had a place, placement somewhere, and then I was asked to do some TV and I thought about it and thought ‘well it’s really not fair for any client, potential clients of mine if they suddenly see me on the television saying I’ve got schizophrenia’ I thought that would be ethically, not right so I then decided to do the television, not to become a counsellor for the time being, and after that I kind of fell into training.

Janey talks about being a molecular biologist, her understanding of genetics and her experiences growing up.

I, well having a background as a molecular biologist, I think there’s definitely a genetic component, but also there is an environmental component and there’s a lot of research done at the moment in an area called epigenetics, where environmental components can change the way the DNA expresses. So even if you have a perfectly reasonable gene anywhere, if you do certain things then you can actually get that gene switched off. And that’s why they see things passed down through generations. Heart problems especially. So mothers who do things wrong in pregnancy pass it on to the children, who will have that gene switched off, and of course if it’s behavioural, if you’ve got behavioural genes switched off you’re going to be doing the same sorts of things. And so then it just passes on down the generations. So looking for genes is a complete waste of time as far as I am concerned. And some of the research I’ve seen would support that. It would probably make a lot more sense to have a look at environments, especially growing up, and perhaps during pregnancy as well.

 

And I guess relating that back to you? What do you feel about your environment, growing up and so on?

 

I’m not sure how much I messed myself up smoking cannabis at university.  I didn’t have an easy childhood. 

 

But my sister and brother got through it okay. So... so… I really don’t know completely where it came from. It’s a difficult thing to sort out.

 

When Janey was first admitted she used to be bored, but now she brings a book, a pad and pencil into hospital.

What was your experience of spending time in hospital?

 

I would always be in the same hospital. I suppose I’ve got used to its limitations. Don’t mind it. I’ve worked out a way of make, creating a space that’s my space. So even though it’s, it is, it’s a mixed ward, there were separate dormitories. It’s usually four people to a dormitory. I can, even though it’s curtains, only curtains around us, I can make that space mine now. So it’s a safe place to be in. Occasionally if you’re lucky you get a single room, but that’s not very often. Made a lot of friends in hospital. Have worked out what is edible on the menu. Usually these days, I can remember when this first happened to me, I used to be bored stupid, because there’s nothing to do in hospital, apart from you know, agitate the nurses, or talk about the doctors or something. Nowadays I’ve just got a set of pencils and an art pad, and just take that with me, and do that. Or read something. It’s a great excuse for reading really simple literature, you know, Jilly Cooper or something. Because nothing you can’t really read anything more complicated than that, because your brains not working properly. So it’s a time when you can read some real trash novels.

 

And you’ve worked out these strategies now. What was it like when you were first in hospital?

 

When I was first in hospital I hated it. I didn’t know what to do with myself. It is very difficult because you genuinely cannot concentrate. If you’re really, really distressed you can’t read either, and so a lot of time in hospital pacing around a lot, being given extra medication for all sorts of things. Being held down and given medication occasionally. Trying to escape occasionally as a sort of spontaneous user group forms where you all get together, and, and it works really well actually. Talk about things that you have in common and so say oh that happens to me and the way I deal with it is like this, and you learn from people around you.

 

So what sorts of things have you learnt in that way?

 

Things I was learning. The questions the doctor asked, I always remember this particular group, and this is 3 o’clock in the morning. All of us, the doctors had, had sounded as if they didn’t believe. They also kept asking the same questions every time you saw them. So my, what I deduced from that is that he doesn’t believe me. He’s going to keep asking until he gets the right answer. And I thought why is it? Why is he doing this to me? It turns out that’s the way he dealt with everyone. And we didn’t know it. And so it’s very comforting to hear other people say he did it to them as well. 

 

Janey said that everything 'blew up in her face' and went to see her GP who gave her antidepressants when she wanted 'tranquilisers'.

And I think it was about a year into that job, just everything blew up in my face big time.

 

I was seeing things that people say weren’t there. Voices came back big time. I was depressed. Oh it was horrible. It was horrible. And the head technician in my department in the end said to me, “You’ve got to see the medical person.” So I saw the medical person, who said, “You’ve got to see the psychiatrist.” 

 

In the meantime as well as this was going at work, at home I had gone to the GP and said, “Can I have some tranquillizers. I can’t cope.” And of course she started asking questions and ended up giving me antidepressants, when I actually wanted some Valium. And she had at the same time referred me to a psychiatrist, but I didn’t actually know this. 

 

So I saw the psychiatrist. About three days later, took a huge dose of these antidepressants and ended up in a psychiatric ward for the first time. 

 

Janey found it took a long time to find the right combination of medication, as she felt awful on medication at first.

I hated depot injections, really hated that, I think that, the, the six months that I was on Haloperidol depot was the worst six months of my life by a long time.

What was happening?

Oh gosh, terrible medication for me if I was up walking around I wanted to be lying down, if I was lying down I wanted to be up walking around so I couldn’t actually get my body comfortable, ever. I was kind of working for eight hours a day and then I would try and lie down sleep for the other sixteen because if I was asleep then the uncomfortableness of my body I wasn’t conscious of it. so even at work every time I sat down to write up my lab book I would get up and start doing something and it took me ages to work out this is just medication this is just restlessness, it’s not that you need to do something and so, I, my lab book didn’t get written up quite as well oh gosh it was so awful and I just wasn’t interested in anything. [Oof] and at the time because I suppose I seemed okay, well at least not psychiatrically ill, I couldn’t get the doctor to understand how awful it felt and in the end, and I said, I said, “Okay I’m not taking it then.” And he said, “Well if you do that I’m going to tell work that you’re not co-operating with the treatment.” So I stuck it for six months and then said, “I don’t care what you tell them and I don’t care if I get sacked I’m just not taking it anymore.” But it took doing that to actually get anyone to do anything about it.

And then what did they do when they did something about it?

So then I actually [sighs], I got ill I think and got sectioned, if I remember rightly, even though I was on the Depot and then he tried me on a new medication which was still on clinical trial at the time and I really liked it but since then it’s been withdrawn.

What was it?

Remoxipride. I really liked it as a medication a lot, but then that got withdrawn and then I tried a couple more and then in the end I went back to one of the old ones which is kind of alright I can kind of cope on it.

So what are you on at the moment?

Sulpride which is one of the older ones and Sertraline which is an anti-depressant and then I take Procyclidine if I’m going to have to sit down still for any length of time because otherwise, otherwise my legs still walk around on their own. So, you know, if I’ve got to sit through a film or, I sing in a choir, sit, sit down and, not fidget em] then I’ll take one otherwise I won’t, otherwise I don’t bother.
 

Janey has no idea whether cannabis 'messed up [her] brain', and stopped it because it was hard to 'sober up'.

I suppose one ought to say I was messing with drugs, so I was… smoking a fair bit of cannabis and had dabbled in one or two other things. Which is probably not sensible. I have absolutely no idea whether that messed my brain up so.

 

What was your experience of that?

 

Cannabis is quite good fun. It makes music better definitely, that’s really good fun. In the end this was...

 

In the end I found that with alcohol I could kind of sober up if I absolutely had to. With cannabis I couldn’t do that. I stayed stoned and I didn’t like it. So just stopped smoking it. From one day to the next though right now I’m not doing this any more. 

 

Janey found the first year at university a very exciting time.

I was very lucky, I mean I was very unlucky. I didn’t get the university places I wanted. Went through clearing and got in Sussex. And that was, that was brilliant, because everyone there, this is at the time when, seriously communist university. It had 43 conservatives on the Campus and we knew who they all were. And I could be as wacky as I wanted, nobody cared. Nobody really made me want, you know, there weren’t things that, expectations that I was having to live up. And I already sought to have failed my A levels by having to through clearing in the first place. So having done that for the first time in my life, failed everything, it then opened things out. I could be just what I wanted which was great. So I spent a lot of time playing politics, a lot of, a lot of time socialising and doing really crazy weird things. Hung out with the politicos. Went out with someone who was a cross dresser. So we both had mini skirts on all the time. 

 

And got a biology degree in the end. I was ill, actually that’s the first time I can really remember, being psychiatrically ill in the way that I am these days, at the end of my first year at university. I had tried to kill myself. Two friends had decided that I needed to see the Campus doctor. So they phoned him, and he argu… he was arguing and arguing with me that either I came to the sick bay and took some medication, saw a psychiatrist the next day or that they would section me up to [name of hospital]. Which was one of the big psychiatric institutions at the time. And so I went into the sick bay. Saw the psychiatrist the next morning. I managed to persuade him that there was absolutely nothing wrong with me, even though I by this time, and I knew I was hearing voices. And got out again. So … 

 

Janey says that schizophrenia isn't the easiest thing to live with, that it's important to have a mix of friends, and that it may take a while to find the right medication.

Schizophrenia is not the easiest thing in the world to live with, but it can be done. It helps to have a sense of humour, as in most thingsit helps to have other friends who have also got a Mental Health problembecause then you can bounce things off each other, but it also helps to have some friends who have nothing to do with Mental Health because then you can talk about other things.

One of my best friends, its photography and choir we always end up talking about, never ever, ever talk about what I’m doing in the Mental Health field.

 

So I think it’s important, like everything else, is not to, to narrow it down, to think ‘oh only one group of people’s going to understand’. for me I prefer to be, honest, I’ve got a diagnosis of Schizophrenia, know not like when I just meet someone, “I’m Janey and I’ve got a diagnosis of Schizophrenia.” Nothing like that, but if it comes up in a conversation then I would not back away from it and I would not pretend I didn’t have it but I know other people like to do it different ways soI think that’s a personal choice.It might take a while to find the right medicationbut work at it some people may be able to manage without mediation, wonderful, wish I could.