Rachel - Interview 14

Age at interview: 47

Age at diagnosis: 27

Brief Outline:

Rachel said she had a happy childhood until she was sexually abused by an elderly uncle. As a direct result she became anorexic and was then in touch with psychiatric services. Rachel's father died when she was 21, and she was hospitalised for the first time at 27. Now Rachel does voluntary work, does plenty of exercise, and has learned to be kind to herself.

Background:

Rachel does voluntary work, is in a relationship, and has no children. Ethnic background' White British.

More about me...

Rachel describes her life before services as ‘fairly fraught’. She said she had a ‘happy childhood’ up until she was sexually abused by an elderly uncle. She said of the incident ‘You walk into a room with a head full of ponies and flowers and a little girl, and you walk out completely different and your life is never the same’. As a direct result of the abuse she was anorexic during her teens, weighing 5 ½ stone, and was in touch with psychiatric services.

 

When she was 21 her father died in circumstances that were ‘incredibly traumatic’ and she was left with an immense amount of anger and sorrow’ that she could not resolve. At 27 had a ‘complete psychotic breakdown’, having received very little help from her then G.P.

 

She describes the experience of psychosis as “the most terrifying thing” she has ever dealt with. Her first experience occurred when she was alone at night and she heard voices and started to hallucinate visually. She stabbed herself in the liver “because [she] believed the world was going to end, somebody was going to break into [her] house and murder [her] mother and the physical sensations [she] had of just being about to explode, literally [she] could feel [herself] inflating. [She] just did something out of desperation to stop that feeling”.

 

After surgery she was admitted to psychiatric hospital and found the experience “fairly traumatic” and became catatonic for a short period of time. She would “go into and out of psychosis because it [was] a very highly-charged atmosphere”. On her first admission she was given a diagnosis of anxiety/depression. She also had a care worker who treated her unprofessionally and she made a complaint against him. Having been in hospital for 3 months Rachel was discharged, and describes having to re-integrate herself into society as “really not an easy thing to do because you have this incredible experience that you just can’t discuss with anybody’. Rachel believes there is a great stigma concerning mental illness, but although you have to be “incredibly careful who you discuss it with, it’s vitally important that you do.” She had a “very good” psychologist whom she saw weekly, and also took advantage of therapies such as anxiety management and relaxation. Over the next few years she built up her own business which, although successful, was also “incredibly stressful”. She found herself unable to cope with the workload and had another psychotic episode that required hospitalisation.

 

She was re-diagnosed by a psychiatrist as having schizo-affective disorder, and she believed “that’s the end of [her] useful life”. Having discussed her history of an eating disorder with the psychiatrist she was put on Risperidone, and was assured that the drug did not cause weight gain. Subsequently she gained 2 stone, ceased to menstruate and became very restless and anxious. With the help of her psychologist she came off Risperidone, having found that her levels of the hormone prolactin had been affected by the drug. Rachel had difficulty describing psychosis to somebody who had never experienced it, particularly her carer at that time, and got a great deal of help and information from Rethink about severe mental illness which helped her in coping with and understanding her condition. She found that “it’s not just what goes on in your mind, it’s how you feel physically”, and she coped with her symptoms by using anxiety management and mindfulness techniques – “the things that are going to help practically” to control voice hearing, particularly in public. She describes how voice hearing can make you feel “incredibly persecuted” and that “what is so unnerving about the voices that you hear is that they do seem to know what makes you tick”. Rachel finds stress a “huge factor” in severe mental ill-health and she monitors what she watches, avoiding horror films and the news, as she found the politics of the Cold War in the 80s and the threat of nuclear war “just horrifying”.

 

Rachel has found that she would rather be on medications that have few side effects, as some of the psychiatric medications are “horrendous”, and prefers to deal with her difficulties through a “broad spectrum approach”.

 

Rachel describes recovery as “such a precious thing” and for her it is when “[she doesn’t] have overwhelming symptoms” and is “able to function”.

 

Instrumental in her recovery was attending a therapy group to deal with issues surrounding her sexual abuse which “took [her] childhood away”. It enabled her to understand the nature of abusers and deal with what happened. She also has a partner with schizophrenia who provides her with an “incredibly loving” relationship, the support of some very good, understanding friends, and a very good CPN.

 

Although the impact of the diagnosis of schizo-affective disorder was devastating, the best thing she did was to accept it and move on to what she was going to do about it. She said “The more you can find out about the condition you have, the more you understand it and the less frightening it is”.

 

She has joined a gym under a scheme for improving the physical health of people with mental illness, and advises to people to be “kind” to themselves and not over-critical, to use insight and to “take a deep breath, take your courage in both hands, get all the help available to you, have the courage to work at it and give yourself time”.  

Rachel thought something was going drastically wrong, thought the world was going to end, and saw visions of both heaven and hell.

When I was about 27, I realised something was going drastically wrong and I picked up the phone to my then GP and said, “I think I need to be in hospital. A psychiatric hospital.” It’s quite a renowned psychiatric hospital in this area. And her response to that was, “Well what do you want to go there for?” And that was the limit of the help I got from the GP at that time. And so I thought, oh my God I’m on my own. And with that avenue of help gone my mental health really, really deteriorated over the space of about four days. I just one night, I just woke up and I just heard a voice saying to me, “Do you really love your Father?” There was nobody else in the room. I was on my own. And I just remember thinking, yes, I do. Yes, I do. It’s like the whole of the top of your head comes off. There’s just this incredible rush of energy and, and hysteria almost. And, then I started to hallucinate visually, and I just saw this lovely garden, and I thought oh this is heaven.

And by that point I was completely lost because then I had an alternative to that, and I really believed I was going to hell. I thought I was dying. I thought I was going to hell. I’m not desperately religious. And I woke up and Mum came into the room and I was completely gone. And we were kind of left to deal with it for a couple of days. I didn’t understand what had happened to me. I really thought I was dying. So I picked up Bible [laughter in voice] and read Revelations which is not a very good thing to do. And for two minutes I actually believed that I was Christ, until I was logical enough to think, well I’m not male, so what’s happening? And eventually I stabbed myself in the liver with a knife, because I believed the world was going to end. I thought somebody was going to break into the house and murder my Mother, and the physical sensations I had of just being about to explode literally. I could feel myself inflating. I just did something out of desperation to stop that feeling.

Rachel 'lost the plot', was found by her neighbours, and ended back in hospital where she was diagnosed with schizo-affective disorder. She thought it was 'the end of her useful life'.

I just lost the plot and was kind of found wandering along my neighbours who were brilliant and they took me in, and they got a doctor. And I don’t remember an awful lot about it. Because I was just in overload at that point, and, was not aware of what was going on. Apparently all I was saying was that I’d let everybody down. I’ve let everybody down. And they were incredibly good to me, and they got a locum from my GP’s surgery and she admitted me to hospital. And I was then given a diagnosis of schizo-affective disorder and I can remember [laughter in voice] the interview I had with the psychiatrist, just looking at if I was, you know, I thought I had manic depression or something like that. And she just said, “No I’m afraid it’s a bit worse than that.” And I just said to her, “Are you telling me that I’ve go schizophrenia?” And she said, “No. What do you do have is schizo-affective disorder.” And I thought that’s it. That is it. That’s the end of my useful life. And I think the [exhales] overall feeling then is that you are going to be like it for the rest of your life, and that is going to be your... experience in that you are going to be incredibly ill forever. And I think where hospital care can be lacking, or was, I’m talking about a while ago now, is that they don’t give you any further information. They just put you on a load of drugs. 

Rachel found that she had to accept her diagnosis and thinks it is important that people ask for help. She thinks that what a carer needs to know and what a service user needs to know are sometimes different.

The only thing you can do really, if you do want to come to terms with it, is to accept it. Say, okay, that is what I’ve got, what am I going to do about it. And... always, always ask for help. Always ask for help. You’re never on your own, and you’re not alone. And I think that initially is the biggest thing, the isolation that you feel, and I think that your family, carer or whatever feels. And I think because there is still this element of shame in the kind of older generation I think more than perhaps nowadays. But they don’t ask for help themselves and they don’t... discuss it. Which again in the initial phases is not an easy thing to do, because you’ve got so much you’ve got to deal with. And, again I think I would say that information is vital, but what a carer needs to know and what the service user needs to know, may not be the same thing at the same time, and that’s where you get an awful lot of conflict. Because in my experience your carer will want to know everything straight away. Me, as a person who is suffering from it would like to access it when I want to. Thank you very much. I don’t want a whole load of stuff on top everything else I’ve got to deal with. 

Rachel said that being in public when she thought people were insulting her was incredibly undermining.

And, I think, I mean there would be times when I found the most difficult I think was being in public and believing that people were calling you a slut or a whore or … which is incredibly undermining and there just comes a point beyond which you cannot go out. And I think what I would say to people who are suffering in that way, [inhales] is to do something like mindfulness, is to do the relaxation, to do the anxiety management, to do the things that are going to help practically. And mindfulness for voice hearing is incredibly useful, particularly if you’re troubled when you’re in public, because it teaches you to concentrate only on what you are doing at the time, rather than having your antennae out and taking in all this information because you’re so scared. Yeah, and I think if you, if it does get you that way you can end up becoming incredibly hostile to everything because you just feel persecuted. You know, you do, you just don’t get any rest, and particularly if you do get the more bizarre beliefs, I think with psychosis, you know, that you are being targeted by God or aliens or you are such a bad person that you deserve everything you’re getting. I mean that just is so... sad that, that people go through that and are like that about themselves when with a little bit of help you can stop the process. And I mean one thing I always used to say whenever I was talking to anybody was if, if somebody was actually in front of you talking to you, and like calling you those things, you wouldn’t put up with it, so why put up with it when it’s in your head, or it’s a belief that you have. Just tell them to go away. And there’s something called a broken record technique, which is where you just repeat and repeat the same thing. Which could be ‘That is your opinion. I do not share it’. And you just repeat it and repeat and I found that that was really helpful. Yes.

 

And where were you getting these techniques from?

 

From, well mental health services, you know, they’re absolutely wonderful. I mean if they’ve got, those on offer take them, take them, I mean there used to be, they treat them, and a lot of that has gone now. Yes. What can I say. So that when you were capable of, of doing something therapeutic, exercises and groups, you would do them to help you manage. You know, something like anxiety management. You know, anxiety is a process. It can be controlled [sniffs]. Relaxation. Brilliant. Mindfulness, again, is another group that was at day treatment.  

Rachel found that a local Rethink group was a 'life saver' as it helped repair her relationship with her Mum. She found it useful to hear what other people had been going through.

And I got in touch with Rethink. And they were brilliant. I mean at that point they were the National Schizophrenia Fellowship. And, they got one of the ladies from the local carers group round to see my Mum. And she had a son with schizophrenia and she just sat and talked to Mum and just really let her know that life did not stop just because you have a relation with a severe mental illness. And that was a life saver. It was an absolute life saver, because, I mean, relations between myself and my Mum really had become deteriorated to the point where we were weren’t really talking to each other. Because I could never explain to her [inhales] what was happening. It’s very, very difficult to have to keep going over and over and over what is happening to you. Particularly if it’s a psychosis, because you can’t explain it to somebody else. And if you try, it just makes it even worse. Because there’s so much anxiety involved, and [inhales] if you are psychotic personally what used to happen to me was, I would visually hallucinate. I’d see the world blowing up, you know, it would literally be in flames. I could be watching the television one moment and think it was talking to me, in some incredibly malevolent way. Particularly if there was an actor or actress or something who looked like somebody that I knew. And, I think particularly with too many programmes you get an awful lot of eye contact, you know, so you can think they’re looking at you. The radio, again, if I was ever psychotic I would just have to have complete silence and just completely shut myself off. Which is obviously very distressing for somebody who is caring for you. 

 

But what I did, was to find out all I could about the condition that I had and I thought, right I’m going to do something with this and I got a fact sheet from Rethink about schizo-affective disorder and it was brilliant, and I kind of took my courage in both hands and I went along to one of their membership days in [name of place] and I met... some fabulous people. And I got involved and it’s a very useful thing to have done. Well because you meet an awful lot of people who are similar to you, or who have suffered more. And I think it’s always very useful to bring service user’s perspectives to what was essentially a carers organisation, so you can have some kind of [inhales] hopefully, understanding between the two.

Rachel feels that mental health groups are 'safe' as everyone is there for the same reason.

Mental health groups are very safe. And incredibly important when it’s the early days. Because you need all the support you can get. You know, so things like the day treatment. Like being with people where you don’t have to explain, you know, where it’s a read, that’s what you’re there, that’s what you all suffer from. You don’t have to explain anything, you know, people accept you, you know, that’s it. If you don’t want to have a conversation with somebody or it’s too much for you, you can get up and leave. Nobody worries [sniffs]. It’s only in the last eighteen? Eighteen months? That I’ve felt confident enough to join things like a gym. The art group is something very recent and to be quite honest, you know, when they had a good old laugh, at their own expense, probably, if I was honest, I just thought well [blows raspberry] to you lot then. You know, if you’re going to be ignorant, I don’t want to know. And that is paid on... you know, by term, so, you know, if we don’t want to go back. My partner wasn’t there, and I’m really glad he wasn’t, because he would take it personally. And I didn’t. I just thought oh here we go again. What’s so funny? [laughs]. But it is, it’s, you have to be careful, because, you know, one, if you are hearing voices it can, that in itself is very persecutory and then if a member of the public or whoever does say something stupid, it’s not a good thing, and it can really ruin your day. I think, you know, at that point it’s important, to kind of pull your horns in and really concentrate on what’s going on for you at that moment, and deal with it. People are stupid sometimes. You know, the public as a whole can be fairly daft. It doesn’t mean that they know anything about you as a person, or that it is directed at you as a person. You’ll think that’s really important. And I think particularly when you’re young, particularly if you’re a teenager or in you twenties there’s so much that you think you have to do and so much that you to live up to and so much you think you’re going to be and want to have, and half of it you’re not going to get, you know, you’ll just beat yourself over the head, trying to do it. And that I think is one of the nice things about being a little bit older is that you don’t have to do that any more. 

Rachel put on two stone taking medication and felt betrayed by a psychiatrist who told her it wouldn't lead to weight gain.

And I think where hospital care can be lacking, or was, I’m talking about a while ago now, is that they don’t give you any further information. They just put you on a load of drugs and [inhales] and I can remember having a discussion with this particular psychiatrist and saying, “I don’t want any kind of medication that’s going to make me put on weight, because on some of the antipsychotics you put on two or three stone.” And she was very much, “No, no, no. I’ve chosen this – it was risperidone – I’ve chosen this drug because it specifically does not put on weight.” Two stone later, no periods, complete mess. You know, you can imagine if you’ve got a history of an eating disorder, you know, you take that element of control away from somebody despite what they’ve said, on top of all the other problems they’ve got. And I actually had [laugher in voice] to tell my psychologist. I just said to her, I said, “Well just get this woman off my back.” 

Rachel tries to get out for walks and has joined a gym with her partner to exercise during the winter.

I eat once a day. I’m vegetarian. It doesn’t bother me. It’s something I do. I eat to live. Not live to eat. [sniffs] I go to the gym, and I think I walk a lot, you know, when, not obsessively, but obviously when the weather is reasonable, I get out in it. I get out in it. Through the winter both my partner and I go to the gym on a regular basis, and being as physically fit as you feel able to be, is really, really helpful. And in particular, and I never used to be able to run. But I’ve started over the last eight months to run on the treadmill. It’s brilliant for anxiety. Absolutely brilliant for anxiety. And we did that actually but through, it’s at the leisure centre, the local leisure centre, and we did it through an initiative that was put out to GP’s, which was to particularly emphasise physical health to people with mental health problems. [sniffs] And it was to, I think it was a free assessment that you have, because obviously before you go to a gym you have to know how to use the equipment. And obviously you are weighed and all the rest of it. And a lady just came, because you had to take your jumper off or whatever. She said, “Oh where did you get that scar.” Because I’ve got a scar from the sternum to belly where I took a knife to my liver. And I told her and I said, “I was very unwell.” She said, “Well, you’d have to be wouldn’t you dear.” You know, [laughs] and, but she thought initially it was a heart operation and she did a lot of work with cardiac patients. So I think as well, you know, the thing to realise is that a lot of professionals are a lot more up on mental ill health. It’s not the, stigmatising scar, that you think it is. You know, there’s a lot more understanding out there now. And it just takes a bit of courage to actually go along and do things like that.

Rachel says that although she doesn't have what some people would describe as a 'full life' she has a happy life.

I’m wondering as we are starting to talk a little bit about recovery? What does that mean to you?

 

Oh it’s so precious. It is such a precious thing. Recovery to me means that I don’t have overwhelming symptoms. That I’m able to function. Recovery to me means that I’m in the community and not in hospital. You know when I am in hospital I am desperately unwell. And anything, that is better than that, is recovery as far as I’m concerned. I don’t have, what some people would regard as a full life. I have a happy life, even though I haven’t got two beans to rub together, but, you know, that’s the way it goes. And that’s it. I mean I can’t work but it doesn’t mean that I don’t have fulfilled or useful life, and that’s taken me a long time to accept and come to terms with and I think since I have done that, you know, I’m not going to change the world on my own. I’m not going to have a high powered job. I’m probably not going to have any job of any description, but what I do have is a wealth of experience. It may not be in an area that is to everybody’s taste, but you know, it, it can be useful. And, and it has been incredibly useful in helping my partner. And I did find, you know, having access to Rethink, just that incredible relief of knowing that you are not on your own, you know, that there are thousands and thousands of people who suffer the same way. Yes. And I think also, I mean recovery means you have to take some practical steps. I mean on the news I will listen to a bulletin any day, rather than reading the newspaper, watching the news, and keeping in current affairs, because basically it’s the same old, same old thing. You know, and as you get older you do kind of realise that. You know, the world turns [laughs]. And we’ve seen it all before. You know. And try not to get too worried about it. Because I think one of the very common things with anxiety in particular, is awfulisation, catastrophisation, where you think that the worst is going to happen. And that just isn’t going to happen, you know, it’s not going… [intake of breath]. Mindfulness has been very, very useful. Because what I find happens to me particularly if I’m stressed is this constant whirring for what’s going round and round and round and round in my head, all the time. Getting worse and worse and worse and worse and it fuels anxiety and to the point where you can begin to feel physically quite uncomfortable, and its learning what the cut off point is, you know, beyond which you are not going to go, and you put a stop on it, and that’s been really, really excellent. Yes. And I think the other thing as well is, realising that as you do get older, you do get stronger. Your resilience against it does grow as time goes on. Particularly if you’re fortunate enough to have periods of time when you are not psychotic. It doesn’t mean that you won’t have the symptoms of anxiety or depression or the huger mood swings that you can get. But that becomes within the bounds of what is normal for you. And it becomes acceptable and I think the more you can find out about the condition you have, the more you understand it, and the less frightening it is. And I would recommend organisations like Rethink. They have some fantastic information. Because sometimes, you know, the medical profession, they don’t know everything. You know, they don’t. And the psychiatrist will be well versed in medication and another nurse will be well versed in talking therapies. So this kind of thing. What you need is a kind of broad spectrum approach, and just grab anything that’s going. Yes. 

Rachel didn't deal with the powerful feelings about her dad's death and her sexual abuse until years later.

Whenever I used to mention Dad, I just burst out crying. I mean I cried for hours. Hours and hours and hours. I think, I mean the main thing I had to come to terms with was a lot of anger. There was a lot of anger anyway about things, such as the sexual abuse issue and it was years before my resolve came. It was about 20, about 25 years, after the event that I actually did something about that. And found it was a group that was specifically for victims of childhood sexual abuse. And I think with my Dad and the overwhelming thing by the end of it was anger. It was anger with everything and everybody. And because, you know, …. [inhales] I didn’t deal with it at the time. And I think if you’re a thoughtful sensitive person then anger is, is not something that you deal with very well. You know, if you’re not used to these incredibly powerful overwhelming feelings of injustice, and hate [laughs]. I’ll be honest, yes. Yes. They’re very, very hard to deal with, and particularly if you’re quite isolated as well. You know, if you’ve kind of isolated yourself. [sniffs] It is very, very difficult. Yes.

Rachel finds that because her partner also has schizophrenia their relationship is complicated. She can also understand friends who are going through a hard time.

I mean there are times, I’ll be honest when I think, oh God, you know, I can’t cope with this, but I wouldn’t be without him. You know, I think any relationship, either talking to friends or whatever, you know, any relationship has its ups and downs. It’s, you know... We have that kind of extra dynamic and we, I think, in a funny way, having the extremes of experiences that I have had has made me a fuller person. If I have friends who are in trouble emotionally, if they’re going through a really hard time, I’m there for them. I can understand, you know, they can talk to me, and that is a gift. You know, that is a gift. And, without being, you know, oh I can solve anybody’s problems. No. But the friends that I do have I have such a deep relationship with them that we can talk about anything. I mean absolutely anything. And we support each other which is vitally important, and I think so many people don’t have that, you know.