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Electroconvulsive Treatment (ECT)

First becoming unwell

This summary is about when people first noticed they were unwell. You can read elsewhere about the different diagnoses people had and their general experience of mental illness (see ‘Diagnosis of a mental health condition’ and ‘Depression, psychosis and anxiety’).

Many (but not all) of the people we spoke to mentioned things that caused them a lot of stress leading up to their experience of mental health problems. These included difficult work environments, problems with family life, feeling socially isolated, feeling pressure to succeed (e.g. in studies), having a miscarriage or a traumatic birth, menopause, or the fallout from experiencing neglect or abuse as a child.

Sometimes events happened immediately before someone became unwell. For some, however, it was years later before they realised that difficult events they had experienced may have had a role to play. Some people felt that having a family history of mental health problems could also partly explain their problems (perhaps due to inherited genes and/or learned behaviour).

Some of those we spoke to didn’t notice they were experiencing problems at all. It was others – friends, family, employers – who first recognised that something was not quite right. Although they were struggling, at the time they were not aware of how serious it had become. Others (particularly those experiencing psychosis) were convinced that there was nothing wrong with them. So the change to being seen by others as unwell could feel sudden.
 

Yvonne didn’t realise she was ill at first and built up a reality for herself that she could cope with at the time. She would say things that were bizarre and got annoyed when people didn’t believe her.

Yvonne didn’t realise she was ill at first and built up a reality for herself that she could cope with at the time. She would say things that were bizarre and got annoyed when people didn’t believe her.

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And you were saying that when you were so young you didn’t really know about mental health or…?

No.

….anything at all. And you said that it was other people around you who were noticing that there was something wrong.

Yes.

What was, sort of, happening at that time, what you know, looking back now, what was going on?

I suppose, you know, I was living with a family who, I thought they were very, very good to me. They weren’t my own family… but my, I had a really good friend at the time and I’d be saying things to her that were really bizarre and was saying things like ‘I thought that somebody was trying to poison me’. Saying things like, that ‘I’d been on holiday to maybe a America’ or where and I’d already seen her a day previous, you know, so there was no way, you know, it was just completely like, the things I was saying doing were out of character, but completely unbelievable at the same time. So but I do think that I built up a reality for myself, that I could cope with that at that time. But yes, it was just, it was quite bizarre, and I was get, I would get annoyed with people that they weren’t believing what I was saying and you know, becoming really quite frustrated and then realised that I was just very, very ill.
 

When Julian left his wife and his dad had terminal cancer, he became paranoid and imagined the CIA were all around him. He did have moments of being rational when he remembered being psychotic.

When Julian left his wife and his dad had terminal cancer, he became paranoid and imagined the CIA were all around him. He did have moments of being rational when he remembered being psychotic.

Age at interview: 47
Sex: Male
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Yes, when I was 40, or just before I was 40, I left my wife and at the same time my dad had terminal cancer. And because of things that had happened in the marriage I became very paranoid. You, you know, it wasn’t paranoia out of, you know, it didn’t just sort of come out of nothing, it was paranoia based on things that had happened. Which I guess is kind of interesting because you think maybe when people talk about paranoia it’s completely sort of free-floating. Whereas it certainly wasn’t in my in my circumstances, or at least not to start with. 

And then I went away on holiday to America. And when I came back I can remember thinking that, well, first of all that the taxi that picked me up had CIA, had a CIA driver in it, and I was convinced when I checked in that, that the people there were part of the CIA. Yes, it was quite, it was quite bizarre. And I suppose the bizarrest thing was that I was still coherent enough that, that in between the times when I was psychotic there were periods where I was completely coherent and could remember being psychotic. And I kind of went downhill from that point.

And I can remember getting messages from the television and, not just the news [laughs]. Yes, so it was, well, I wouldn’t say it was an interesting time, it was a terrible time. And kind of from there it, it got worse. I became, well, I became incapable of doing anything at all. And I guess when you get a very deep depression you kind of cease to feel anything at all. It’s this complete sort of, I mean I think emotion is part of the human state and I felt no emotion at all, complete nothingness. And in a sense you’re no longer human when you feel that. You, you know, it’s as if you’ve kind of like stopped being. So, you know, I felt like my life was completely on hold.
 

For Jane there was a period when she became increasingly anxious about small decisions. She thought she was well but all she could think of was the worst possible scenarios.

For Jane there was a period when she became increasingly anxious about small decisions. She thought she was well but all she could think of was the worst possible scenarios.

Age at interview: 38
Sex: Female
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Ok, well I think I’d say that the relevant time with me becoming ill was around July 2009. I’d become increasingly anxious about kind of any decisions that I had to make, like we were going camping with some friends up in [name of town] and we had to go by car, although we don’t own a car and I was really anxious about driving and about what to take and things that I’d normally be fine about, I was really fretting about. 

And I’d also become quite anxious about the children’s development and how I was with them and the way that I was bringing them up and things like that. So that was all, I was extremely anxious about that.

And then we went, the crucial time that sort of triggered the fact that I was ill happened just after I’d been sent home ill from work, so they’d noticed that something was up, when I was hiding under a desk and saying that I needed to go to sleep [small laugh]. So they said, “You’re not right. You need to go home.” So I was sort of signed off from that point.

Anyway we then went camping to a festival. I don’t know why we went. It was crazy to have gone, but we did [laughs]. I think I was just like, well I’m not ill, so we have to go with life as normal, because I was utterly convinced I wasn’t ill and there we were with some friends who, she was, just found out that she was pregnant and she had to tell us because she kept being sick, so, and they had two small boys. So I became convinced that my daughter was sexually abusing the boys. So I didn’t want to leave them alone with her and all that sort of thing. And then also was convinced that we were going to cause the Mum to have a miscarriage because we were like demanding so much of her, as she was doing all the cooking and things like that. 

So when I said that to [name of husband], when I got home, I said, “She will have a miscarriage and then you will know that I was right about everything.”

That was when, I think that could have been when he called the doctor initially or called a second time and certainly spoke to a friend of mine and said, “Look she’s really lost it completely.” 
Gradually becoming unwell
It was hard for some to pinpoint the precise time when they first experienced mental health problems. With hindsight, many of the people we spoke to said they had been experiencing difficulties for most of their lives. Some people remembered feeling anxious or acting ‘strangely’ as a child (see ‘Childhood’), whilst others only experienced difficulties in their adult lives. Enid had had periods of depression throughout her life, but it was only in retirement that she became seriously depressed and needed to be admitted to hospital.
 

David Z had coped with his mental illness from childhood and only sought help much later in life when his depression was “longer and deeper”, “very dark” and he felt “very, very suicidal”.

David Z had coped with his mental illness from childhood and only sought help much later in life when his depression was “longer and deeper”, “very dark” and he felt “very, very suicidal”.

Age at interview: 44
Sex: Male
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I guess my story is that I’d suffered from mental health issues most of my life since I was about a teenager, since I was about 12, and I coped quite well with them, most of my teenage and working life. Up until I got to about 38-39, and they started to get progressively worse. My depression would get longer and deeper. And that went on for a couple of years until I got to my early 40s where I got, I really had a bit of a breakdown, I would say, and the depression got very, very deep and very, very dark and very very suicidal. And at that point I’d been referred to a consultant psychiatrist and it was agreed that I would then move into hospital at that point. 
 

Sheila’s husband had anxiety and depression “on and off” over the years. They used to laugh off his obsessive compulsive disorder but over the last 3-4 years it has become much worse.

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Sheila’s husband had anxiety and depression “on and off” over the years. They used to laugh off his obsessive compulsive disorder but over the last 3-4 years it has become much worse.

Age at interview: 64
Sex: Female
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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. 
For some people it was only when their mental health led them to harm themselves or attempt suicide that they received help. Catherine Y found she couldn’t concentrate at school and was tired and apathetic. She remembers a school report when she was 14 saying that she was “in the midst of the doldrums.” It wasn’t until she took an overdose at 16 and was diagnosed with depression that she was admitted to hospital. Tristan thought at first that his wife was just physically exhausted after a long and traumatic labour, but she didn’t recover and in fact slowly got worse. She was very apathetic and eventually tried to harm herself.
 

Yvonne had taken on a lot of responsibility in the family at a young age because her mother was an alcoholic. When a suicide attempt failed, she got up and went to work but her supervisor knew something was wrong.

Yvonne had taken on a lot of responsibility in the family at a young age because her mother was an alcoholic. When a suicide attempt failed, she got up and went to work but her supervisor knew something was wrong.

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I’d grown up, when I was young, my Mum’s an alcoholic and she was drinking alcoholically like, so I took on a lot of responsibility with myself and my sister trying to, trying to be Mum I suppose to my younger sister and there was a lot of abuse within the relationship that I had to try and cope with. Which I think probably, well very much definitely resulted in the first breakdown that I had.

As I say it was when I was 18. I didn’t have, I didn’t realise that I was ill. I’d never heard of mental health before, and you know, it was twenty years ago, so things were different then. And I remember being with a family that I was living with at that time, and going to my bed and I’d taken an overdose and I was serious, that was it, I just didn’t want to be waking up in the morning. 

I had taken 20 tablets and I’d woken up in the morning and gone to work with what I can only describe as a Mother of hangovers. As soon as my supervisor had seen me she knew something was wrong and I got put into a like hospital. 

A mental health team quickly became involved, and a psychiatrist came to see me and asked if I wanted to go to [Name of hospital] for a weekend’s assessment. So I agreed, not knowing what [Name of hospital] was. I thought they were sending me to a spa or somewhere for a rest [laughs]. How wrong I was [laughs].
Sudden realisation of being unwell
Many people recalled the moment when they noticed they or a loved one was unwell. For some a number of things happened at once and bought on intense feelings of anxiety and stress. Others described a key moment when they knew something had changed, or something had “triggered” them into illness, such as the death of a friend or pet, breakdown of a relationship or divorce.
 

When a close friend died suddenly Tania went into shock. She couldn’t sleep and everything seemed unreal.

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When a close friend died suddenly Tania went into shock. She couldn’t sleep and everything seemed unreal.

Age at interview: 41
Sex: Female
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I came back from holiday and I was told than one of my best friends had been killed in a car crash and she, it’s something really strange happened, I just, when I heard the news I just went into shock, which anyone would have done but I didn’t really recover from the shock. It was as if I can only describe it as if, like a screen had come down between me and the world and nothing, it was, it was disproportionate in every way to, as a reaction to what had happened, because it was though it was a terrible tragedy and she was a close friend I, what happened was not, was out of proportion to the event. It was everything became quite unreal and I didn’t really know what was going on. 

I just knew that I didn’t feel right and I went back to university. It was the beginning of the second term and very soon it became evident to me that I wasn’t myself, everything seemed quite, everything seemed quite unreal, and I. I mean I lost my appetite and I couldn’t sleep. I was waking up very, you know, if I went to sleep I would wake up very early in the morning and it, everything, my head was, felt like it was rushing inside. I couldn’t stop thinking, not about anything in particular, just thinking and I couldn’t sleep and I couldn’t, and everything around me seemed progressively more unreal. I’d be in a room and it would just seem like everything was spinning around, but my behaviour was normal, like it didn’t manifest itself in my outward behaviour, but I knew I didn’t feel right and I started to feel really bad, and I just felt really, I didn’t really know what it was. It didn’t, I can’t really say that I even felt depressed. I didn’t necessarily feel low in the way that you would think. I just felt really strange and my head was spinning and it felt awful. It felt, it felt like, you know, I was in a different world from everyone else and I felt a huge sense of panic and isolation and just detachment, and I couldn’t feel anything anymore. I didn’t feel sad or, I just didn’t feel anything. Just felt scared, about what was going on and I, eventually I went to the doctor. 
While these could be difficult times for anyone, their reaction was unusual (e.g. “out of proportion”), and they didn’t recover from the initial shock or grief, and their feelings worsened. Several mentioned noticing the change when they went on holiday. Mandie had seen her cat run over and thought she was fine. But when she went on a family holiday two months later, she spent “the whole time” panicking and she said “it was like someone took the life out of me, and I couldn’t see the fun in it”.
 

Suzanne had a bad experience while travelling and then had vivid nightmares that made her afraid to sleep and she ended up in hospital. She had previously split with her boyfriend and been overworked.

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Suzanne had a bad experience while travelling and then had vivid nightmares that made her afraid to sleep and she ended up in hospital. She had previously split with her boyfriend and been overworked.

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I was a post graduate student at the time and I was travelling a lot, and I was away from home a lot, and what sparked off the whole incident was something happened in the place where I was staying that gave me a fright and it triggered off nightmares and the nightmares were so vivid that I was afraid to go asleep. So I stayed awake for about four days because every time I went to sleep I was having these really horrible nightmares and I looked like somebody who had been through a road accident, like I was in shock after a couple of days of this and by about four days I was becoming paranoid and about the third day, I think, I went to A & E in in the nearest town, and I travelled back to [name of town] and I was admitted to hospital there within a day or two, and then… 

So the more, the background information to that episode was I had been doing a bit too much work. I had broken up with a long-term boyfriend and I hadn’t been taking breaks when I needed to. And after a few months of that building up, and building up something small that happened just triggered and sent me completely off the edge and I guess that time when I was admitted to hospital it was a huge shock to me to be in hospital and I really didn’t want to be there and… that was my first experience ever of the psychiatric system and medication and what the medication does and what different kinds there are [small laugh] and… it was just a complete eye opener and also kind of a complete blow at the same time because I was in my probably early to mid-twenties at the time and… mental health was something that I’d never really thought an awful lot about before then, and suddenly I felt that my existence was being decided upon by the mental health staff of when I had leave to go home and that kind of thing. And it was a huge, huge eye opener really and yes.
For some, the change came without warning and for others there was a longer build up.
 

When Carys’s 19 year old daughter said there were snakes in her room she thought she’d had a nightmare. But her college then reported her stalking her tutor. Shortly after that she was sectioned.

When Carys’s 19 year old daughter said there were snakes in her room she thought she’d had a nightmare. But her college then reported her stalking her tutor. Shortly after that she was sectioned.

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When she first became ill, nobody, it’s the most, it’s the most difficult thing to understand... I don’t think people think about mental illness in everyday life. I think they think about heart attacks, cancer, all those, sort of, diabetes etc. But nobody ever thinks about mental illness. It’s not on people’s radar and when it happens to you it has the most devastating effect you could possibly imagine. I went to talk to the doctor. She came into my room one night and told me that her room was full of snakes. And, she was at college at the time. And she was never academically very brilliant but she was very fit, she was training to be an aerobics teacher and a beautician and hairdresser. And she loved life, she really loved life and she was strong and fit and slim, and very beautiful. 

And she came into my room one night and said she had, the room was full of snakes. And she couldn’t sleep there. And I just automatically thought like everybody does, even though she was 19, she’s had a nightmare. So I said, “Oh well, come and jump in with me.” And didn’t think any more about it.
Two or three days later I had a phone call from the college to say had I noticed anything strange about my daughter, because she had picked on a tutor there and was staring continually, never taking her eyes off this tutor, following him round the college and staring and arriving from behind walls and just staring? And they knew that things were not right. 

Anyway I went round to see the doctor and he subsequently said, “You know, we’re going to have to get her to see a psychiatrist. Etc.” 

So a consultant psychiatrist came to my house to interview her and they sectioned her, and she went down to [name of hospital], the local psychiatric unit and she stayed there for eight months on the first trip.
 

Although Tracy thinks she might have been depressed as a teenager, after having a miscarriage and giving birth to her daughter she says depression “hit me”.

Although Tracy thinks she might have been depressed as a teenager, after having a miscarriage and giving birth to her daughter she says depression “hit me”.

Age at interview: 49
Sex: Female
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I grew up in quite a stable family and depression probably hit me, when was it? We, my ex-husband and I moved to [name of country]. He was in the services and whilst I was there I had a miscarriage and I lost the baby at about sixteen weeks and because of my nursing background, I don’t think that helped, I just was very clinical about it, and it didn’t affect me at all.

But to my surprise I had postnatal depression which I, stupidly, never realised could happen with a miscarriage and they were really nice. They didn’t know how to deal with me there, but they sent me back to the UK and I stayed with my Mum for a bit and then my ex-husband came back to the UK with me. 

And then a year or so later I had my second daughter. And it was probably about a year after that I started to become really depressed. And I can remember having to go to the Department of Psychiatrist and the psychiatrist interviewed me, and he went off to get some paper work and I just ran. I had a little moped at the time and I drove that home and took a massive overdose and I went to the general hospital and I have vague memory of it.

Had you ever experienced anything that you would call depression or low mood or anything like that before hand?

I think in my teenage years, possibly. But Mum had severe mental health problems, depression, and you know, whether it was just a reaction to what was going on at home. My Mum lost my sister when she was a baby and that was before I was born and she’s never really recovered from that. I don’t think you can recover. And so, whether it’s, no, not really [laughs]. No, but it was in the family. 
Many people spoke about experiencing mental illness after the birth of a child, either as the first experience of depression or one of several episodes. When this happened a long time ago, there was very little understanding of postnatal depression.
 

David Y’s partner was pregnant and had a toddler when she first became unwell. It was only when they went to a party he remembers people noticing she was withdrawn, and two weeks later she was taken into hospital.

David Y’s partner was pregnant and had a toddler when she first became unwell. It was only when they went to a party he remembers people noticing she was withdrawn, and two weeks later she was taken into hospital.

Age at interview: 52
Sex: Male
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I, we’d got a young lad, a little toddler and I was working and so with the hours I did I didn’t notice too much at first and I’d gone up to, I’d gone, taken her and we’d taken the lad and myself up to see my mother who was, well there was a party going on and my partner, she just seemed to sit there and not say much and others kept saying “Is she alright, is she alright?” and so I’d say “Yeah she’s alright, just tired.” 

But then as the next couple of weeks went on it became more and more noticeable that there was something not right and so I called the doctor. Doctor said oh yes I’ll have somebody come out next day to you and I thought well okay but she’s not well, she’s doing all these daft things. So next day came, “Yes she’s suffering from a psychotic illness,” “What do you mean?” “It’s a psychotic illness I can’t, I don’t, I can’t tell you the in’s and out’s,” “Okay”. So there was another, he said I’ll call somebody else out, she come out and yep, “We need you to go, take her to the parent and baby unit.” 

So I went up the parent and baby unit and they had a chat, “Yes, we think there’s definitely something wrong and we need, we think you need help.” And so yep, “We’ll take her over to the hospital, we’ll take her over to the [hospital],” “Okay.” And so taking her over, take us over to the [hospital] and want, she got worse travelling over there and we saw a consultant on the ward, “Yep, she’s going to have to be admitted” and she said, and the consultant turned round to my partner and said “Do you know where you are?” [Pause] “No,” “Do you know who this person is?” “Yes.” She says “Shoe Sales Assistant,” and I thought well thank you very much, that’s what you think of me, so yes she was definitely not right. 

Last reviewed January 2018.
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