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Electroconvulsive Treatment (ECT)

Other people’s reaction to mental health and ECT

People we spoke to had often experienced quite severe mental distress and found that other people didn’t have a lot of knowledge about mental ill health, or the available treatments. ECT in particular was not widely known about and other people were often surprised that ECT was still available as a treatment (see for more “First thoughts about ECT and finding out more’). 
 

A friend of Lorraine and Annie had lost her mum to mental illness and wished she’d known about ECT. They felt more people should be told about it.

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A friend of Lorraine and Annie had lost her mum to mental illness and wished she’d known about ECT. They felt more people should be told about it.

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Annie: And we’re in a very good situation where we get to know about ECT.

Lorraine: Yes, yes.

Annie: Because a lot of people I’ve spoken to, “What, what does that entail? What does that mean?”

Lorraine: Yes.

Annie: You know. And my, one of my friends lost her mum through mental health and she ended up committing suicide. But she didn’t know about ECT and she said, “Well, if we’d have known, would we have gone down that route, would we have done something?” You know, it’s all, so, but I haven’t come across a lot of people who know a lot about ECT.

Lorraine: No.

Annie: So I think to get it out there more as well, you know. And for people to realise it is out there.
 

Tania thought it was a shame that the public had such a negative image of ECT, as it has a high success rate, rapid results and reasonably few side effects.

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Tania thought it was a shame that the public had such a negative image of ECT, as it has a high success rate, rapid results and reasonably few side effects.

Age at interview: 41
Sex: Female
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But I think that ECT’s a remarkably successfully treatment, has vast success rates on people who are in a really acute state and I just think it’s a huge shame that it has received such negative publicity and so many are so reluctant, even to suggest it as a treatment, when in fact it could help enormously and it achieves really rapid remission and it may have marginal side effects, but I can’t, you know, compared to the side effects of long term drug treatment even, its minimal. 

Talking about mental illness was difficult for most at the best of times. So when they or a loved one first experienced mental health problems, discussing it could be very tough. Many people spoke about the stigma usually attached to mental health issues. Dafydd said a relative of his had had ECT and his father had refused to visit. His family regarded it as something “embarrassing and shameful”. When Cathy was at college in the early 1980s and started acting “strangely”, people didn’t know much about mental health and she was asked to leave. She was later diagnosed with depression and schizophrenia. She felt they “didn’t want some mad woman” at the college. In the present day, some thought mental illness was treated as not like a real illness: Tracy thought you would likely get sympathy for a broken leg but if you took time off work for depression, people would just think ‘”pull yourself together”. Working in hospitals, Sunil felt there was still stigma and discrimination, even amongst doctors, which he had experienced as a medical professional with a mental illness.
 

Yvonne says she’s had experiences of being treated “like a leper” by a manager. She thinks there is a fear of mental illness.

Yvonne says she’s had experiences of being treated “like a leper” by a manager. She thinks there is a fear of mental illness.

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And it’s really good that you had these supportive interactions now and you trust your friends and your husband and your daughter and so on. Has that always been the case when you’ve talked about either mental health issues or ECT or…?

[shakes head] No, a lot of people get really, really frightened, but its people that don’t understand. You know, some doctors don’t even understand. You know, so these, you know, if doctors are medically trained how’s Joe Bloggs in the street going to fully understand what mental health is? In fact everybody has mental health. It just depend on whether It’s good mental health or bad mental health, but hopefully stigma, the barriers will be broken down, but I do feel that there’s a lot employers need to do to help support staff. But it’s like everything in life you get good and you get bad, you know, so, but I’ve had some really bad experiences of manager who have almost treated me like a leper and then they’re realised. I’ve left jobs, not because I don’t like the job but because I couldn’t cope with how colleagues treated me. But I suppose I’m quite an open person and if somebody asks then I will say, you know, because I don’t think there’s anything to be embarrassed about, but just there is a fear, you know, there’s a fear, there’s a fear.
Many people held back from discussing their mental illness with friends and family because they had not come to terms with it themselves e.g. they were ashamed, embarrassed or felt a failure. Over time it has become easier for some to talk more openly, but not for everyone. Tristan said although he and his wife decided they wanted to be open about her mental illness, they found it hard to talk about ECT because of the additional stigma surrounding it. Even now he still finds it difficult to talk about.
 

Although Sunil no longer feels embarrassed and ashamed about his bipolar, he hasn’t told his large extended family much about it. His wife didn’t know about it until they were married.

Although Sunil no longer feels embarrassed and ashamed about his bipolar, he hasn’t told his large extended family much about it. His wife didn’t know about it until they were married.

Age at interview: 56
Sex: Male
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With my wife, it hasn’t been a problem because basically once she found out when I had my first episode after getting married then I told her, to be very honest with you, even though I was a medical student, that episode of mental illness I had as a medical student, I did not at that time know that I had bipolar, nobody diagnosed as bipolar because at that time, I had never ever had a high episode, I had only ever had an episode of depression which the label was labelled as a “nervous breakdown”. And many people had nervous breakdowns and I did actually even perceive as depression, even though I had ECT and anti-depressants, and you know, as far as I was concerned it was something that happened in the past and was probably never going to happen again which is one of the reasons why I didn’t divulge it to my wife before I got married. But I think obviously in the early years, I think my wife was obviously aggrieved that she wasn’t given this information before we got married, but it hasn’t really damaged our relationship I’m pleased to say.

But in terms of family, well I’ve got a very medically orientated family because I’ve got one sister who’s not a medic, but I’ve got two younger brothers, both of whom are also doctors. My middle brother, the one younger to me, is a general practitioner. And the one, the youngest one is a consultant vascular and transplant surgeon. So basically my family probably understand about depression and bipolar and ECT just as much as I do.

But in terms of telling the extended family, it’s not something that I’ve gone, we’ve gone out of our way to advertise. Some of our extended family, of which there’s a very large family, they are aware that I’ve been ill, but they probably don’t know the details of what kind of illness I’ve had, and apart from people who find out at work that you’ve been off ill with a breakdown, I haven’t gone out of my way to tell people that I’ve got bipolar. And most people know that I’ve had mental illness which is why I have prolonged periods of time off work, but they don’t know, most of people don’t probably know that it’s bipolar. Although in recent years in the letter that my psychiatrist has sent to the workplace before returning to work, they have actually mentioned the diagnosis. So I’m sure some of the people at work do know. But it’s not something that worries me as much as it did in the past. I’m no longer embarrassed or ashamed to have this illness because it’s not something I’ve invited, it’s something I’ve been… afflicted with.
 

At first Matt’s wife was embarrassed and wanted him to keep quiet about her illness and ECT, yet since her recovery she has felt more “comfortable” talking to people about it all.

At first Matt’s wife was embarrassed and wanted him to keep quiet about her illness and ECT, yet since her recovery she has felt more “comfortable” talking to people about it all.

Age at interview: 36
Sex: Male
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I guess the kind of the cultural baggage of it was quite significant. And given that [name of wife] was already really uncomfortable with people knowing that she was ill, people knowing that she was on medication, people knowing that she was in hospital. I mean she was in hospital for three months, the second time, three or four months. And she kind of wanted me some how to pretend that she wasn’t and was worried about people finding out that she was in hospital and that was really difficult. 

And… so ECT was kind of one more thing that somehow was embarrassing or shameful or you know, people weren’t supposed to know about. And you know, that was all part of her experience of illness and since recovery, she’s been quite comfortable talking to people about being ill and about being hospitalised and having ECT, but still ECT is a kind of, the last thing to surface and… sometimes in a way I think, she kind of enjoys startling people with it. Yes.
 

It has taken a long time for Kathleen to feel comfortable talking about her mental health problems, even to close friends or health professionals. A sense of shame or failure means she won’t talk about some things.

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It has taken a long time for Kathleen to feel comfortable talking about her mental health problems, even to close friends or health professionals. A sense of shame or failure means she won’t talk about some things.

Age at interview: 51
Sex: Female
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I still find it difficult to talk about some things to do with my mental health with even people I am very close to, so it’s still attached to a sense of, for me, a sense of shame or something like that, failure or whatever.

And you were saying before that’s your sense of it, but people have reacted differently?

Yes. Yes. 

And has that always been the case or have you found who to talk to, and who not to talk to over the years, or how has it worked out?

It’s a relatively recent thing that I’ve talked to anybody so [small laugh] yes, I found, it’s, it’s taken me all my life probably to find, to feel comfortable, to find, to feel safe talking to close friends about things. And certainly no I wouldn’t want to just talk to anybody. Yes, there are those you can talk to and those you can’t talk to. Yes. I do feel that and of course any professionals in the field I used to find it difficult even to just go and see my GP about it, but I’ve come a long way from then, in a good way I think, because no one can help me if I don’t talk about it. But I still get anxious if I’m meeting somebody new and then afterwards I go over it in my mind. I think ‘did I ramble on too much or did I say the wrong thing?’ 
Many of the carers we spoke to, said that they were hugely relieved when they heard that ECT might actually help. However, some people mentioned that their friends and family were frightened when they first heard that someone they cared for might have ECT “sort of Frankenstein-type electric shock thing going on”. And once the person had had ECT, the side effects could be upsetting. When Yvonne was brought through the ward after her ECT, she was drooling and one of the boys she had met there, who was a fellow patient, thought she had been harmed and “flipped” (for more see ‘Side effects of having ECT”).
 

Jenny’s daughter, who was a medical student, did not want her to have ECT. Jenny didn’t talk about ECT to anyone except her husband.

Jenny’s daughter, who was a medical student, did not want her to have ECT. Jenny didn’t talk about ECT to anyone except her husband.

Age at interview: 56
Sex: Female
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And she was absolutely terrified, in the way some medical students are, terrified that I’d already had one quite significant head injury and that whatever ECT would do it would damage or worsen memory and cognition. And she knew that actually feeling as if I’d lost a few IQ points and much less able than I had been before I hurt my head had been an upset to me, and she didn’t want that to get worse. So I started ECT in an atmosphere of almost deceit. So [name of daughter] would phone every day and say, “How are you?” And my biggest memory of ECT is of that unhappiness, knowing that I was lying to, or at least not saying anything to her if I wasn’t directly lying. [Name of husband] obviously knew that it was happening. And [name of daughter] indeed came to realise it was happening because I started ECT in hospital and I had twelve treatments, five of which happened once I had gone home. And so she came home around that time, so she indeed took me in for several of those last five treatments, much to her distress because she objected all the time to it, she really hated the idea of it.

I didn’t talk to, my son was travelling, away travelling at the time, my eldest son. I didn’t talk to my two younger children, who were at the time both of them on the at risk register. And one I think remains there, the under-16-year-old remains there. So I, and I don’t tend to talk to people. I don’t, I have very few friends, I don’t make friends easily, and I don’t talk, in fact I don’t think I’ve got any friends I would talk to about something like that. The only person I would talk to and did talk to was [name of husband].
 

Sheila’s friends reacted with “shock and horror” when they heard her husband was going to have ECT. She reassured them it isn’t “like in the films”.

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Sheila’s friends reacted with “shock and horror” when they heard her husband was going to have ECT. She reassured them it isn’t “like in the films”.

Age at interview: 64
Sex: Female
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It was difficult. Very difficult. Hm. And when I sort of said, when I said to friends or colleagues and things and I said, “Oh he’s going to have ECT.” “Oh my” And the shock horror or ohhh. You know, and I said, “No, it’s not, it’s not barbaric like you see on films and things, it’s, it is done in a caring way, you know. And they don’t treat it lightly. They really do sort of think well it could help you. 
 

Once they had seen the effect of ECT, Tania said her family and friends were very supportive of her having it, and even became “pro” ECT. However, she doesn’t talk about it openly.

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Once they had seen the effect of ECT, Tania said her family and friends were very supportive of her having it, and even became “pro” ECT. However, she doesn’t talk about it openly.

Age at interview: 41
Sex: Female
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I mean my family, sort of my family they’re really, I mean I guess because I had it such a long time ago now, and they knew stuff and so it’s kind of, they just, they don’t think anything, they’re quite, you know, they’re very rational my family, and they think, you know, this is an illness and this was the treatment that worked and like, yeah, like I say my Grandma had had it, and you know, my brother’s a psychiatrist who practised it, who’d actually done it himself and so it, for my immediate family it didn’t really, you know, they don’t think, they’re just grateful that it exists. You know, they think, if anything they think ECT is incredible. They are like pro ECT, you know, they’d carry around pro ECT banners if they could, you know, [laughs]. They are just thankful that the process exists. 

My friends, my close friends, likewise I think, you know, they can see the difference that it makes and even if they’d never heard of ECT or even if they had heard of ECT and had you know, kind of strange ideas about it, having seen me going through it and the difference that it makes to me, they now, you know, they would go and recommend it to anyone that they heard was in a, and I think that’s generally. Everyone who knows me, if they hear of someone else who was in a similar situation, the first thing they would do would be say, “You know, consider ECT. It’s incredible.” 

Other people? I mean I find it, I don’t know, I mean, I don’t really, although I’m doing this and as I say I’ve done the other things for MIND about kind of pro ECT sort of interview or whatever, but I don’t really tell people a lot. You know, I don’t, I’m not, I don’t hide it. If someone asks me directly but I don’t talk about it a lot. Generally I just don’t talk about the whole thing, but I think that people find it so hard to understand, you know, to understand mental illness in itself, that actually, for me, it’s easier not to talk to, unless it’s a very close friend who sort of, I just don’t talk about it, because people’s misconceptions and lack of understand is, you know, it just that in itself is, yes, I can’t sort of, I just find it hard to deal with really.
While people were careful about where and when they spoke about their mental illness and ECT treatments, some had learnt not to make assumptions about how others would react. Kathleen said although she finds it difficult talking to people about her experiences, including health professionals, in fact people haven’t reacted negatively in the way she expected.
 

When Enid was self harming in hospital she felt everyone would be looking at her. Later she realised that was their problem, and opening up helped her make new friends with whom she has a lot of fun.

When Enid was self harming in hospital she felt everyone would be looking at her. Later she realised that was their problem, and opening up helped her make new friends with whom she has a lot of fun.

Age at interview: 74
Sex: Female
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I can remember, I was trying to hurt myself with everything I could lay my hands on. I just felt, I felt very frightened. The staff they were very good, but, you know, they tried to help me through everything every day but it was a very frightening experience the first time of going and having treatment and you also feel, almost as though, kind of I’ve got a mental problem and everybody’s going to be kind of looking at me, people will treat me differently. Well if they do, you kind of come to realise that that’s their problem not mine. And the funny thing is I’ve met some incredible people. That I would never have met any other way and some of the nicest people. And I’m really grateful for that, because there’s a good group of, of us, you know, kind of go around together do things. A lot of fun, and yes it’s a pretty good side to it… and people have been very supportive, very helpful and I always feel that I want to tell people that, if it’s appropriate that I had a problem with depression and it’s amazing how many people kind of, will then open up with problems that they wouldn’t otherwise mention to people. So it’s a good way of helping other people to.
People often learned over time how to better manage the way in which people reacted to mental illness and ECT. Some people said they worked out the people they could trust. People were pleasantly surprised about some people’s positive and supportive reactions to their experiences. Kathleen made a new circle of friends who she could freely talk to about her mental illness (for more see ‘Support networks’).

Last reviewed January 2018.
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