In this section, people tell us what happened when other people found out about their mental health diagnosis, how they talked about their mental health with others, and how the diagnosis had affected their life. Many initially felt ashamed about their mental health problems, and some families shared this feeling of shame (see also
‘Diagnosis’ in this module). Some people tried to overcome this negative feeling, and a few became proud of themselves and of being diagnosed with conditions like schizophrenia or bipolar affective disorder. Others took pride in their identity as voice hearers and rejected their psychiatric diagnosis.
People told us that there was a particular stigma attached to being diagnosed with schizophrenia. Mary said that other mental health diagnoses like ‘obsessive compulsive disorder’ are more talked about and accepted in society. Some people thought stigma arose from public ignorance, in particular the fear that people with schizophrenia are violent. People worried about the consequences of a diagnosis for them at work: whether they would be treated differently or even sacked. Some felt that the problem was not just one of public ignorance, saying that the psychiatric system and psychiatric diagnosis in particular were to blame by giving them a stigmatising label. One man didn’t like the word ‘stigma’, preferring the term ‘discrimination.’ He felt it was a basic human right to be treated fairly and with respect. Despite many negative reactions, others found that their friends and family were warm and supportive, and they wished they had discussed the issue sooner. However, these people also pointed out that they nonetheless had to be cautious with whom they discussed their diagnosis if they wanted to avoid negative reactions.
Telling people
Dolly talks about her family finding out about her experiences.
Dolly talks about her family finding out about her experiences.
Age at interview: 39
Sex: Female
Age at diagnosis: 22
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Well although I had since these experiences, I was 14. I didn’t tell my family even about it until I was in my thirties. And actually I, you wouldn’t tell them verbally. I wrote about it in my book, that I, you know, have written. And, most of my family read it. It was only then that they realised what was happening. And it was, I, that was, I was scared actually what they would think. And it was really nice that they, you know, picked up the phone and said, “Why didn’t you tell us at the time, you know? We were wondering what was going on with you, you know.” And actually, because they knew what was going on, we became closer, they didn’t reject me at all. You know, it was just explained so many things, you know. So they all know about it. Because my Mum is quite, can’t really read or write properly. She couldn’t read the book, but I did tell her what had happened. And she got a bit upset, but now she’s okay about it. you know, you know, there are certain parts of my family are not okay about it. And I think it’s kind of cultural. Because my Dad is Indian and there are kind of a lot of shameful things within the fam… the Asian community and one of them is being, you know, mental illness. So they were saying, “Oh you haven’t got that. You haven’t got that.” And they are quite religious as well, so they just kept wanting, wanted to take me to the church to be healed and I’d be fine. And actually, what was really dangerous, one of them did say, “It is the devil.” You know, not the right thing to say to somebody. They actually believed it. So yes, that part of it has been painful. But because I have kind of, have written about my experiences in a book, and kind of talked to the media about it, you know, more people know that I have these experiences than not, and you know, I have to say the majority of people have been okay about it. I have to say. Although I have been spat at. I had neighbour who read an article about me in the local paper, just totally going, you know, from saying hello to me in the morning, just totally turned on me and threw eggs at my door, and kind of was really verbally abusive.
So I actually, the, I tried to ignore it at first. But then I said it can’t be ignored, because it’s not stopping. So I said to her, “Why are you doing this?” And she said something else, quite I thought a bit funny. She said, “Oh you’re dangerous.” I said, “What, well can I just bring up two points. One don’t you think your behaviour now by throwing eggs at my door and being verbally abusive is dangerous? I’m not doing these things and secondly, you have known me for like five years and have I ever, ever brought up any kind of concerns? Have I ever done something very irrational?” “No.” So I said, “Why have you changed, why has your perception changed? Why aren’t you judging me from what I am and not what your what your kind of assumption is about mental illness?” It stopped. I mean she still didn’t speak to me, but the abuse stopped.
People found ways of telling people about their diagnosis and experiences. Green Lettuce talked about going to a residential college with other people who had experienced mental health problems, and there could talk freely about his experiences for the first time – others had experienced similar things.
Annie found it easier when her diagnosis changed.
Annie found it easier when her diagnosis changed.
Age at interview: 34
Sex: Female
Age at diagnosis: 18
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In some ways I found it easier, kind of when I’m talking about it to say it’s cerebral lupus than it’s psychotic depression, even though the symptoms and the, and as I said the symptoms, the outcome, the medication, kind of the services involved have been exactly the same. But then, within my own kind of, my own assumption you know, and my own prejudice, I probably find it easier to think that’s what it is, even though, as I say it’s exactly the same. I’m less embarrassed. I think I’m less embarrassed about kind of having psychotic episodes now, then I was when I was a teenager, but I think that’s perfectly normal to be embarrassed by everything.
I mean you’ve talked a little bit about the reactions of other people what has that been like. You’ve a talked about your family, but what about other people?
I don’t think I’m totally honest if I’m honest. I don’t think I’m totally honest. I mean mental health services have been quite, I don’t think, I’ve not had a bad experience of mental health services and I’ve not had a bad experience of my GP, at all, but, but kind of, you know, wider friends and colleagues and stuff I don’t really tell. I don’t really say that that’s what I’ve had or anything.
And why do you think that is?
I suppose a slight embarrassment still, and slight kind of can’t quite, it still does, it still even after a long, long time it still does feel confusing to me, and it’s still stuff that I’m not quite sure about and I’m not quite sure what totally went on, what totally didn’t go on and so it’s quite hard to get that kind of I’m still a bit confused across to somebody in a kind of, but I’m not mad really [laughs]. Do you know what I mean, getting that both, getting that I am still confused about it, but I’m not a complete nutter. Getting that kind of dual aspect of it, across to somebody in a coherent manner is quite difficult.
And if you had any more sort of direct experience of people not understanding or you know, any adverse reactions or that type of thing or…
No, not particularly. No. Not particul… I think people find it hard because, as I say partly because of medication, partly because of the other, the wider diagnosis. I get tired really quickly. I think they find it difficult. And because I can’t process things. I think yes, I think, possibly, the [tutors] do find it a bit hard. Or people do find it a bit hard, because I’m quite a bright girl, at some, academically bright, academically able, and yet I can’t quite process things, quick and other things, like practical stuff and I get overloaded really quickly. And I think sometimes that’s quite difficult for people to understand, that I can write this great long essay, but yet I can’t kind of get my shit together in the morning and be out the door by 8 o’clock, you know, and that’s partly because of the medication. And I think people find that quite hard to understand, is how, how I can be so able in some ways, and sort of cognitively able, but yet in other ways kind of being able to process the everyday things, I can’t, I find that really difficult. I get, I do get overloaded with noise really quickly, and I get overloaded with kind too many new stuff. Which is weird because as I said I can academically cope. But not, kind of not with that, you know, what I mean, it’s sort of whoosh, it feels a bit, yes.
Rachel feels that mental health groups are 'safe' as everyone is there for the same reason.
Rachel feels that mental health groups are 'safe' as everyone is there for the same reason.
Age at interview: 47
Sex: Female
Age at diagnosis: 27
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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.
While some people were met with support, others told us of serious consequences when they mentioned their mental health condition. For instance, Arwen wasn’t allowed to work with children and a fellow volunteer told her ‘you ought to be locked up’. Annie had kept the same friends since she had her diagnosis, despite sometimes not feeling well enough to go out.
People often compared mental illness with physical illness. Some felt that people responded differently to physical illness' for example, being more sympathetic or making more effort to be accommodating at work.
Mary felt that she didn't get the same understanding from other people about her son's mental health problems that she would have done if he had a physical condition like cancer.
Mary felt that she didn't get the same understanding from other people about her son's mental health problems that she would have done if he had a physical condition like cancer.
Age at interview: 61
Sex: Female
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And people with mental health problems, they don’t get the same help I think as people that have physical health problems, and I mean there’s such a stigma attached to mental illness.
What’s been your experience of stigma?
Huh hm. Even though you, I mean, if I used to think that if he’d had cancer, he’d probably get, he’d get more understanding, you know what I mean, from his team of people that are looking after him. You get more understanding from society. Because I used to find that people would, they wouldn’t come near you, they didn’t really want to ask you how he was, whereas if some, even though he was, what I would call ‘ill’ for quite a few years with mental illness, but people wouldn’t ask you how he was, because they’d say oh well he’s mentally ill, in hospital locked up, whereas if you had somebody who say for instance, had, was paralysed from the neck down or you had somebody who had cancer, people would, not that I was looking for pity, not that I was even looking for help, but just a bit of understanding really, you know, but you don’t get that with people with mental health problems, the same way as if you have a chronic illness, like diabetes, or epilepsy or something like that.
Some people felt that doctors and other professionals treated them badly when their mental health diagnosis was revealed. For instance, Peter said he didn’t get prompt treatment for appendicitis and a serious pain in his neck because he had mental health problems.
Robert was shocked by the reaction of a younger GP, and changed to another GP who had much more understanding about his mental health problems and drug use.
Robert was shocked by the reaction of a younger GP, and changed to another GP who had much more understanding about his mental health problems and drug use.
Age at interview: 45
Sex: Male
Age at diagnosis: 43
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Robert - Because I mean to say people’s views of mental health as well isn’t it. You know what I say. It’s not like talking to [name of partner] in itself, like because you’re both used to it, but you know, you talk to say a neighbour or somebody else and I sort of ahhh like you know, they get so scared of it don’t they? And truthfully that doesn’t help.
No. I imagine.
Robert - I mean to say a lot, a lot of people they just sort of like they don’t want to know you. They just like walk away. Don’t want to know. But if that’s the way they want to be. All fair… all’s fair isn’t it. You know, but I don’t think it helps the people with the mental health issues much like. It’s a lot easier to sit down and talk to someone, but a lot of people won’t talk to you because of the mental health. I mean my doctor, like you know, I know for a fact when you start talking mental health like, he goes white. And that’s a doctor [lights a cigarette]. But that doctor of mine he’s the most... the most scariest doctor I’ve ever come across. Just because he’s so unhelpful and so biased. He’s only young as well. Which, you know, he’s only in his 30s. He looks quite young doesn’t he?
Partner - Yes.
Robert - Sort of 30s and that like. And I’ve changed doctors since in the same practice, I just go and see a different doctor. Now I’m with an older doctor who I’d expect to be worse. He’s fantastic. You know, “Oh don’t worry like, we’ll help you out.” Like, you know, nothing too much trouble, and yet to go to one of the younger doctors like and he’s scared of his own shadow when you start talking about mental health. And you can see it in him. Like, you know, you walk into the room like and you walk in right, and he sits in his little chair and he gets up and he’s like this and it’s really strange I tell you. It’s the strangest thing I’ve ever come across. And of course mental health, me with mental health issues and I’ve got a doctor doing this and I’m thinking well whose the mental… whose the person with the mental health issues? He got that bad that honest I had to take [name of partner] in with me all the time, because I didn’t trust him. It’s like, almost imagining him trying to section me to be truthful and I’m not sure if that was for... I suppose they section people for the public’s safety. Right. Well this would be nothing to do with public safety. This would be to do with how the doctor felt about me, his personal views on me. And that’s not right. It shouldn’t have to be like that. They say put in a complaint. Well what’s the point. What is the point of putting a complaint against someone like that. I wouldn’t have a leg to stand on.
Partner - They wouldn’t do nothing about it anyway.
Robert - No. No. Because of mental health issues like and the drugs I’ve done in the past no one’s going to listen to me. Hm. I generally feel like I don’t have a leg to stand on with it. And I don’t know how to go about it. I don’t know how to deal with it. I don’t know what to do about him. There’s got to be something I can do, but what it is or how to go about it or how to cope with it, I haven’t got a clue. People like that, doctors like that shouldn’t even be allowed to practice. I don’t think so anyway. Wouldn’t you say. Alright, I know that, all doctors and nurses like, with some things I’ve had in the past they’re not my favourite of people but in the same respect like I quite, I respectful, I’m polite, you know, and I’ll always be polite and respectful to doctors like you know, they do a lot of good for a lot of people. They just don’t do a lot of good for me. But people like [name of doctor] there’s no way, there’s no way that bloke should be practising medicine. I’ve never felt so abused… He actually… I can’t rememb… my old man died in my arms and I didn’t cry, my daughter died and I didn’t cry. But I tell you what he had me in tears down that bloody surgery. And I just through sheer frustration of not knowing how to deal with him. And that’s a doctor. And because it’s mental health issues I happen to know he’s got all the power in the world over me. I mean he can be rude as he wants, he can be as unpolite as I want, but the minute I’m impolite or rude to him like. Oh. I just hope like there isn’t too many doctors around here like him.
Naveed talks about visiting the dentist and hearing the receptionists laugh about his mental health problems.
Naveed talks about visiting the dentist and hearing the receptionists laugh about his mental health problems.
Age at interview: 42
Sex: Male
Age at diagnosis: 15
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Yes, so I’ve not seen a dentist since 2006 and a few weeks ago, I had pain in, in this side of the mouth. I was having a weak tooth it was like. And I went to see my GP and he said, “Oh it’s an infection.” So he gave me some antibiotics and about a week, two weeks after I finished the antibiotics, I had more pain again, so I went to see him again, and he said, “You need to go to a dentist.” And I saw my psychiatrist and he said the same thing. He said, “Go and see someone right. But if you’re worried just tell them that, you know, you’ve got a mental health problem, then hopefully they’ll take a bit more care of you.” So I went down to the dentist that used to be house like, and I walked in and I told him that I was having a lot of pain, and they gave me a form to fill in. And then I walked back again. I said, “Oh by the way, my doctor told me to tell you that I’ve got mental health problems.” And she said, “Okay.” And as I was walking away, the other girl asked her what I’d said, and she said, “Oh he said he’s got a mental health problem.” And they both started laughing. So … And I was, that’s really shocked me, because I didn’t expect that, because like I said, the stigma in the white community isn’t as bad as it is in the Asian community, but then in the Chinese community it’s even worse than in the Asian community. So I think… at the time it didn’t mean much to me but I think it has sort of knocked me back a bit, because you are about the fourth, fifth person I’ve told. So…
It’s not a nice thing to have gone through. Yes.
You just try and get around it. Try and plough through. If you have run to every single negative remark people make to you, you wouldn’t get anywhere, you’d just be stuck at home or don’t want to go out the house or whatever. And I have enough of that when the voices are really bad, or when I’m seeing things. I’m really bad. I mean I spend that time at home anyway. And if I … then I spend time at home because of what someone said, I wouldn’t get out of the house at all, you know, so ….
Public awareness
Some people had been involved in high profile campaigns/political movements to try to reduce stigma and change how mental health problems were seen by others, including psychiatrists. In general, people have been impressed by the general public’s reaction to mental health issues. Dolly helped organise a festival called ‘Bonkers Fest’ – a summer arts and music festival celebrating madness and creativity – which was highly popular. Others have been involved in training psychiatrists, the police, and other professionals to try and improve their understandings of service-user perspectives. Tim had given talks in schools and colleges, and thinks that people are more understanding about mental health problems than they would have been 30 years ago.
Janey trained as a counsellor at the same time as doing some TV work about her mental health.
Janey trained as a counsellor at the same time as doing some TV work about her mental health.
Age at interview: 52
Sex: Female
Age at diagnosis: 29
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While I was still a scientist I had actually done the training to become a counsellor, I was so impressed by this care coordinator decided that’s a really good thing to do, so I went, I’ve got a qualification in Person Centred Counselling, and just one Christmas, it was actually over the Christmas holiday I thought ‘right I’m leaving science, I’m going to’ ‘be a counsellor’ and so, I just gave my notice in, worked out my month, stopped being a, a scientist, and, before that I had also been doing some training with Rethink I’d been going with a couple of people and giving the user perspective of being taken into custody by the police on Section 136, and so I had these options, and, the, what happened was that, I was all set to become a counsellor and I had a place, placement somewhere, and then I was asked to do some TV and I thought about it and thought ‘well it’s really not fair for any client, potential clients of mine if they suddenly see me on the television saying I’ve got schizophrenia’ I thought that would be ethically, not right so I then decided to do the television, not to become a counsellor for the time being, and after that I kind of fell into training.
Nevertheless, a few people talked about ongoing and highly negative reactions to mental health problems.
Georgina talks about an incident with her son in a public swimming pool.
Georgina talks about an incident with her son in a public swimming pool.
Age at interview: 62
Sex: Female
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And then a few months later, he started to go swimming. We were over the moon, because he’d, he’d always loved swimming before he, he got ill. And came home one day, and said, “One of the lifeguards called me out of the pool today.” And I said, “Whatever for?” And he said, “I don’t really know Mum. He asked me why I came swimming so often.” And alarm bells rang for me, and the next time [son’s name] went swimming, which was a few days later, two uniformed officers called him out the pool, and asked him why he are you there while there’s children in there? I was horrified. My husband came and picked me up from work. We went to see the leisure pool manager, and then we were more horrified, he told me, “It wasn’t me who called the police, it was a head teacher of a local school.” So we went to see the head teacher of the local school, and I asked her, “What promoted you to bring the police on my son?” And her answer was, “I’m here to protect children.” And I said, “From what?” And she said, “I’m here to protect children.” And so I said, “What was my son doing?” And she said, “He sort of stands at the side of the pool for ten minutes.” And I said, “Well now, I’ll explain to you what I think happened. I think you not… or someone noticed that my son stands at the side of the pool when there’s children in there. So he was then… that got back to the leisure pool manager, who told the life guard, ‘Go and interview’ you know, go and question him … And my son being honest said, ‘I’ve had a mental illness. I’m trying to build up my muscles.” Those were his very words. But all hell broke loose. I said, “But had my son been sitting in a wheelchair staring at those kids you’d have done nothing. This is public ignorance.” I said, “Yours, the police’s and the leisure pool manager’s.” And my son was then on Prozac for almost a year, because he was so severely depressed. And when I say to him, “[son’s name] do you want to go swimming?” He’d say, “No. I feel ashamed”. But he bore their shame as far as I’m concerned. Or not even their shame. The shame that we don’t do enough to educate the public. I think it’s absolutely disgraceful. There should definitely be training in schools.
Naveed had been blacklisted by one side of his family; Rachel said she had come out of hospital to find that her business had collapsed because people didn’t want appointments with her once they found out she had a psychiatric disorder. Colin was nervous about disclosing his mental health problems when applying for jobs for fear of discrimination. He was concerned about the gaps on his CV when he had been in hospital.
All in all, people remained nervous about disclosing they had been treated by mental health services, but were encouraged as a whole by the increasing public awareness and understanding about mental health problems.
Last reviewed July 2017.
Last updated April 2014.
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