People we spoke to talked about what it was like to experience severe mental health problems such as hearing unpleasant voices that were not there, or feeling extremely anxious. There were also physical experiences, such as extreme tiredness, bodily pains and lack of appetite. For some it was only in remembering their experiences that people recognised that they were so mentally unwell at the time. However, for many, their mental distress was familiar. Having experienced it throughout their lives they, or a loved one, could “read the signs”.
Some people, like Sunil, had clear periods of their lives when they were unwell but also had many years without experiencing any symptoms. Other people, like David Z, spent most of their lives dealing with mental distress of one form or another. You can read more about people’s experiences in ‘First becoming unwell’ and ‘Diagnosis of a mental health condition’.
Steve describes how his wife’s depression looked ‘from the outside’. There were peaks and troughs, but when it got bad she usually had ECT and felt a lot better within a week of being home.
Steve describes how his wife’s depression looked ‘from the outside’. There were peaks and troughs, but when it got bad she usually had ECT and felt a lot better within a week of being home.
Age at interview: 60
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
But as someone on the outside of it, I definitely saw, you know, the physical side where she would just not want to get out of bed, not want to associate with other people, going into a bit of cocoon and so that would go on for weeks really, and you know, she’d be sort of at rock bottom, but she’d be kind of bouncing off “the bottom” a little bit. There’d be sort of peaks and troughs I guess, but she did go through depression for weeks at a time and then if it got so bad, we would then go the route of the hospital. She was being treated privately at that time and went into the hospital near us and she’d be taken in and assessed there and they would usually move on to ECT within a week of her being there. She may have stayed in, she may have had about six sessions, I think in the early days when I knew her. I think she would have about six treatment episodes, probably two a week, so she would have been in there about three weeks with her first week just being assessed, so her period of stay would be about a month, and then she’d come out and you know, 99% of the time she’d be doing a lot better within a week of being home, and then that would, she would progress to how she would normally be within that month I would assume and then you know, we, or she could go through years of enjoying good health and then just out of blue she would have a bout of depression and if it was severe then that would be the route we would go, where she’d go back into hospital and be treated with ECT. So I’m not saying it was a last resort, but it was just something that always worked for her which is why she always asked for it as well.
Some people talked about how difficult it was to put into words their experience of depression or other mental health problems. While some remembered their ordeals clearly, others found it difficult to recall the details of their episodes, Kathleen said she was glad she kept a diary, because there were times when she felt like she was “in a dream” and she didn’t know what was real. Reading her journal reassured her that things were really happening.
While the types of distress varied, people who were depressed often experienced anxiety as well. No two people’s experiences were exactly the same, however, there were some things most people experienced:
• not being yourself, acting “out of character”, being more quiet, “everything [seeming] unreal’, being detached, feeling isolated, being fearful, hyper sensitive to others’ behaviour, loss of self-esteem
• physical symptoms: physical illness, immune system being low, sweats, weight loss, dizziness, exhaustion, feeling lethargic, not looking after yourself, poor hygiene, hypersensitivity, lack of/disrupted sleep, loss of appetite, loss of sex drive
• emotional aspects: no interest in things, shutting down, being uncommunicative, fear, anxiety, panic attacks
• psychotic symptoms: auditory and visual hallucinations (“the people were really, really, really there”), ‘voices’, feeling paranoid, hearing religious themed voices, not moving or being ‘catatonic’, ‘despondent’, being high (mania).
Most people were so distressed at certain times that they talked about being suicidal and or wanting to harm themselves (see ‘
Suicide and self-harm’).
Although people talked about very distressing experiences, equally they found ways of understanding these experiences in time, and this helped them cope. Many people talked about working out how to better manage their mental illness (see ‘
Managing mental illness and recovery’). Yvonne had the usual worries, like how would she be able to pay for her mortgage, but she came to understand her mental health issues as the “added wee bits on top”. She said as long as she could find a way to cope she was fine and “quite happy”. But most people found it difficult to cope and they needed help from others to learn how to do so.
Helen describes her schizophrenia as like having a different personality every other day. At the beginning it was “just dark horrors” but now she works through it.
Helen describes her schizophrenia as like having a different personality every other day. At the beginning it was “just dark horrors” but now she works through it.
Age at interview: 60
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
A lot of it is that the pain is a constant ringing and thudding in my head and my brain satellites and constantly the thought pattern is going from one side of my brain to the other and it’s a sort of schizophrenia, every other day I’ve got a different personality it flips from one to the other. And it’s a twilight world, you’re terrified of people, I used to go and sit in a field just to be away, terrified of people and yet desperately wanting people and wanting company. But all I knew over the years, at the beginning it was just dark horrors, but over the years I’ve gradually come to terms and worked it through.
Being high meant Tania had “vast amounts of energy”, but at other times she was also “mentally suicidal”. She fought the voices in her head, but believed she was going to kill herself and eventually had ECT.
Being high meant Tania had “vast amounts of energy”, but at other times she was also “mentally suicidal”. She fought the voices in her head, but believed she was going to kill herself and eventually had ECT.
Age at interview: 41
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
The next one, I got really, I’d come off the drugs by then because the side effects, they weren’t helping, the side effects were, it was unliveable and I became, I became very I became very manic. It was once again, it was one of these mixed episodes but you know, manic in a really, really bad way. I was incredibly high out in terms of you know, being up all night and having vast amounts of energy and being mental productive but I was also at the same time mentally suicidal, and I was desperately trying to stop myself killing myself. I mean everything in my head was telling me to do it, but I knew because of the effect it would have on my family that I, you know, I was fighting so hard as I had always done against these kind of voices in my head that were telling me to do it. But I also knew it was just a matter of time because it was so intense, I really believed that I was going to die and I believed that I was going kill myself and I believed it was inevitable and that there was nothing that could stop this, you know, this kind of power from subsiding because up to them we hadn’t to the we hadn’t found anything and I did in the end, I, I made another attempt and once again, I was, fortunately unsuccessful and I tried throwing myself off a bridge, but I was caught again. So, and you know, I went back to hospital and, and we didn’t know what to do really, we were all stuck and in the end my consultant said to me, “Look, you know, will you try ECT again because nothing else is working?”
Depression and Anxiety
Depression is different from sadness. The people we spoke to described depression as feeling cut off from the rest of the world, feeling worthless, not wanting to carry on living, wanting to self-harm and feeling the pleasure that they normally experienced “slip away”. Jane wrote a poem in her teens called ‘Shrink back’ describing her “inability to have physical contact with people.” Enid described not being able to stop crying for long periods of time, and many people talked about life having no meaning.
For some, depression came in episodes, but for others it seemed to be how life was.
David spent most of his life feeling depressed. When he wasn’t depressed he said things felt “artificial”.
David spent most of his life feeling depressed. When he wasn’t depressed he said things felt “artificial”.
Age at interview: 44
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think in truth I’ve probably been depressed most of my life. It’s been kind of a cyclical depression. You get some relief, then it comes back, and its back for longer and it’s back for deeper the older I got. And, as I say, my 30, late 30s, 40s, it just didn’t seem to go away. So I would be more depressed than I would be normal, as it were.
Yes, yes. And I suppose that you’re kind of almost saying that there’s not a time, can you remember not being depressed?
No, I’ve been, that’s, yes, that’s true. I can’t think of a time, or if I have felt not depressed I’ve felt that’s very artificial. And I’m a bit frightened of when I’m not depressed because it feels a bit alien.
When Kathleen became depressed she wasn’t sleeping and started drinking and self-harming, and took an overdose. She had marital problems and felt isolated from friends but she eventually got support.
When Kathleen became depressed she wasn’t sleeping and started drinking and self-harming, and took an overdose. She had marital problems and felt isolated from friends but she eventually got support.
Age at interview: 51
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
My husband had gone away working again. It was not what I wanted him to do. But he felt he had to. So again I was on my own. The children were older, but I was on my own and living so far out, living 11km’s out of town working and running the B&B. I wasn’t looking after myself. I wasn’t eating properly, I wasn’t sleeping properly and I was, I’m ashamed to say this, I was using alcohol. But alcohol I find, if I’m depressed as well, of course it’s a depressant, it makes me impulsive as well, and I’ll do things which I didn’t really mean to do and I took an overdose of tablets actually. Some good came out of that because it meant that I got, it got me some help, it got me to see a psychiatrist, it got me friends, getting a break from work, and friends came round I got close to friends and I built up a network, a support network.
For some people, like Tracy, they could feel ok one moment and then become highly distressed the next. She described having fun visiting the beach with friends whilst on leave from hospital but then later that day crying for hours. Sunil and Tania spoke about sliding from being well to being in a severe depressive state very quickly. Some people spoke about being able to “hold it together” on the surface and that it was not until they got deeply unwell that people realised that there was a problem.
Enid kept diaries when she was depressed and found it “surreal” looking back at them. She says when you are well it’s difficult to understand why you wanted to self-harm.
Enid kept diaries when she was depressed and found it “surreal” looking back at them. She says when you are well it’s difficult to understand why you wanted to self-harm.
Age at interview: 74
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
It’s and looking back on it, it almost seems surreal. You know, it’s quite difficult at the moment, almost to even understand how you feel when you’re bad, I’ve cut myself, I’ve done all sorts of things. And at the minute you think why did you do that? Because you know, I don’t have any urge to do it at all, and you look back in the diaries that I’ve done, and it’s, you know, you feel so different. Right now I feel as though everything’s fine and I’m doing okay, and then you, you read back and it’s almost like reading what somebody else has written because it just seems, you know, why would I want to do that? And it’s quite hard to realise just how bad things can get.
And I think at the time you’re going through it you’re not thinking about it in that way, you know, you’re kind of… well it’s almost like an existence, instead of being able to live you don’t want to carry on, you don’t want to do things and so it’s a whole different way of being.
As well as depression, some people experienced ‘highs’ where they had huge amounts of energy. John Z spent a lot of money during these periods, and Tania found she could be very academically productive as well as training for marathons and triathlons. However, people often experienced severe lows as well, where they withdrew from everything and could become very depressed.
People we spoke to had often felt anxious. Severe anxiety can make it difficult to deal with everyday life. People talked about being overwhelmed by feelings of intense fear to the point of terror, feeling that they were going “mad,” or that something awful was about to happen. Annie and Lorraine described their mother constantly worrying that she had something in her throat or that she wasn’t able to breathe. Their mother found it hard to go out when she was unwell.
Julian felt that waves of terror and anxiety made suicide seem an entirely rational choice.
Julian felt that waves of terror and anxiety made suicide seem an entirely rational choice.
Age at interview: 47
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
And I think possibly the worst aspect of, of being ill wasn’t the, wasn’t the depression but the, well if I call it anxiety it just doesn’t do justice to it. I mean I would just sit say in the living room feeling completely miserable and then suddenly I’d get like these waves of terror from absolutely nowhere, just totally out of the blue, you know, just come, come right over me. You know, it was like, it was like the most terrifying experience you’ve ever had, but you couldn’t say it was due to anything. It was just murder really.
And it’s not, it’s not something that’s illogical either. You, you know, I guess I’m quite a rational person actually and, you know, people think, ‘Oh, well, you’re sort of ill and you’re overcome with this kind of nonsense about, about wanting to kill yourself.’ Well, it’s not like that, or at, or at least it wasn’t for me. I mean it was entirely rational that where I was I’d reached the end of the line. I was, it was unbearable to have the anxiety, it was unbearable not to feel human and there really was, you know, it was unbearably painful. And it, you know, it would have been a relief, a release not to have to suffer that. I mean you wouldn’t put a dog through that. So there was nothing, there was nothing un-, you know, it was entirely rational. And it, it wouldn’t have, I know a lot of people say about like the impact it has on people that are left behind. But it really shouldn’t have a negative effect on them. It’s not their choice. It’s nothing they can do anything about. It, it’s their loss if they have to deal with that, you know, it’s them that’s lost something. They shouldn’t feel like they’ve failed in any way.
For years Sheila thought her husband was just ‘anxious’ but later he developed severe obsessive compulsive disorder. He has intrusive thoughts about killing himself to stop himself from killing others.
For years Sheila thought her husband was just ‘anxious’ but later he developed severe obsessive compulsive disorder. He has intrusive thoughts about killing himself to stop himself from killing others.
Age at interview: 64
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well we’ve been married 43 years now. He’s always had anxiety, depression on and off. Sometimes he’s had to have a week off of work, or two weeks off of work, because he hasn’t felt well. He’s been, over the years, he’s been given different medication to try and help his situation. He’s always had, he’s always like things neat and tidy. And we sort of laugh and go, “Oh here he is with his OCD.” And just you know, but really it’s the last three or four years that it has really, really made him quite poorly.
He’s become very, very anxious about things. He says it never goes away. Even if he feels better, you know, if he’s having a better day. But yes it’s probably over about the last four years that he’s been as bad as he is at the moment, yes.
The referral that’s been made recently for him to see a professor who specialises in OCD which they have said that my husband’s got OCD. As in, it’s not OCD as in hand washing and things like that. The way they described it to me, is because he has very intrusive thoughts about killing me or our grandchildren, and he knows that he would never do that that they are thoughts, but they are so intrusive that they are there. That if he kills himself he then won’t be in this turmoil that he’s in and we will all be safe. So this is where they’ve got the OCD from. Because I always thought it was always being tidy, putting things in place and everything. I couldn’t see to start with where they got the OCD from, but that’s, that’s where they get it from, because as I say rather than him killing me with a knife or our grandchildren he wants to kill himself.
Psychosis
Psychosis describes the situation where you see or explain events and things in ways which others would consider highly unusual. It includes seeing or hearing things others don’t, holding beliefs that others don’t share, or making links between things that only you are making. People who experienced psychosis frequently did not know what was happening to them at the time. Some felt very distressed while others thought nothing was wrong with them (see ‘F
irst becoming unwell’). Julian remembers thinking the CIA were following him and thinking the television was giving him messages. In between psychotic periods, he was completely rational and could remember being psychotic.
Sue, who was diagnosed with quasi psychosis, created a figure in her mind who she called the “hanging man” to deal with the effects of childhood sexual abuse.
Sue, who was diagnosed with quasi psychosis, created a figure in her mind who she called the “hanging man” to deal with the effects of childhood sexual abuse.
HIDE TEXT
PRINT TRANSCRIPT
And I created what I call the hanging man. And I think that’s because I wanted to visualise what I’d like to do with him, and he sort of, it started off quite childlike in that, because I didn’t know about anatomy and things. But he was, essentially hung by the neck and he was sort of, he was, is it eviscerated? Everything was sort of like cut down from the neck, all the way, and all his bowels and everything were hanging out. And it hung over his genital area so I couldn’t see it.
Unfortunately that stayed with me, the day, he currently lives in this corner, but whether I’m, when I’m in a moment of stress which has been diagnosed as quasi-psychosis, in that it only comes out when I’m stressed. But really it’s there all the time. But he has a large impact, on my life and I should imagine it always will be. I’ve been through quite a lot of psychotherapies and treatments and things but nothing seems to get rid of him
A few people talked about what they described as ‘spiritual’ or religious elements to their psychosis. Suzanne had a panic attack because she thought the end of the world was coming and thinks she had a “spiritual God connection type-thing”. Catherine Z remembers pulling her hair back and looking in the mirror and “seeing the devil”. She also thought she knew “the secret of the universe”. But Jane, who was brought up a Christian, felt the anxiety she experienced during her depression about going to hell had a protective quality because it actually stopped her from killing herself.
Weeks after a long and difficult labour Tristan’s wife had delusional thoughts that she was going to die and was being watched. She felt she was connected to God and people around her weren’t who they said they were.
Weeks after a long and difficult labour Tristan’s wife had delusional thoughts that she was going to die and was being watched. She felt she was connected to God and people around her weren’t who they said they were.
Age at interview: 38
Sex: Male
HIDE TEXT
PRINT TRANSCRIPT
She started off thinking about a normal worry in a normal way and then her assumptions about that thing would be the worst possible assumption and then it would go beyond that to a completely unreal interpretation of what the consequences of that thing would be. And ultimately it ended up with quite florid ideation about thinking that there was ideas about, a lot of it was to do with God and religion. I think she felt that she had done something to deserve this situation. She thought that [name of daughter] was going to die she thought that that she was being punished, I think she thought that, I think she thought that she was in direct contact with God at one point. She felt that she was being watched, that there was sort of surveillance everywhere I can’t remember a lot of the details now, and she felt that, I think if I remember rightly, she felt that the people around here weren’t who we said we were so at times she didn’t think I was who I said I was and she didn’t believe what we told her, she wasn’t able to be convinced. I can’t remember.
Beattie felt her psychotic episodes had a spiritual element. When she was high she felt she understood things about life, although she could also insult people or do silly things.
Beattie felt her psychotic episodes had a spiritual element. When she was high she felt she understood things about life, although she could also insult people or do silly things.
Age at interview: 63
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well I suppose I think that when you go high and you have a psychotic episode it’s a spiritual thing as well and they call it spiritual emergence and there’s a thing called a spiritual emergence network, because you have these thoughts, and in fact a woman in Scotland was having a spiritual experience, but they took her into hospital and then she actually sued the health authority and won the case, because psychosis and spiritual emergence are similar. And a lot of it’s to do with reincarnation and the meaning of life etc.
That sounds very interesting
Yes.
Can I hear some more about your experience?
Yes, I’m a spiritualist as well and I sort of when I went high I sort of sort of understood things about life etc., about why the world is as it is. And a lot of people who are called schizophrenic, they hear voices which could be spirit voices in some cases.
Can you talk me through some of the things you learned through those experiences?
The trouble is I can’t remember unfortunately. I mean I thought I lived during the French Revolution. That’s all.
And how are you feeling when you are on these “highs” or...?
I’m quite, I’m quite happy but no one else is because I don’t stop talking and I insult people and I do silly things, you know.
Last reviewed January 2018.
Copyright © 2024 University of Oxford. All rights reserved.
