The way in which people with severe mental health problems are viewed by others can affect their ability to find work, develop relationships, and build the self-confidence and self-esteem that people say is essential to the recovery process.
The people we talked to spoke about the ‘stigma‘ around mental health problems, and how this affected them and made it difficult to talk about their experiences. The term ‘stigma’ refers to a characteristic of certain people that others think marks them out as different. Being stigmatised often leads to social exclusion when people discriminate against others who are different to them. Many people felt there was a stigma attached to mental illness and some people felt they were treated differently to others because of this. People recalled instances where they had felt ignored, passed over by someone, or experienced a negative judgement in terms of their capabilities. These examples indicate discriminatory behaviour towards them and raise concerns about equal treatment and human rights in the context of severe mental health problems.
Feeling that they were not being treated as an equal by mental health professionals was a concern for some of the people we talked to. You can read more about that here: Experiences with mental health practitioners: Psychiatrists, counsellors, and others. Some people recognised that they themselves often anticipated a negative response, including Jenny who said, ‘I was self-stigmatising’. This resulted in some people questioning their perception of how other people interacted with them. Alice reflected, ‘I don’t know whether I’ve become more supersensitive to the judgments that are put on me’.
Looking back to when she diagnosed with schizophrenia,
Luana thought her doctor was ‘paternalistic’. She hadn’t realised you could be diagnosed with schizophrenia and still be ‘functioning and well and able to do things’.
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So I thought that people who had schizophrenia were really away with the fairies and not able to communicate. And like really obviously you know, looked you know like they had… I didn’t realise that there were people out there who were functioning and well and able to do things, that had that diagnosis of schizophrenia. For me, schizophrenia was someone who was you know, totally not coherent.
And so then when you received the – so you didn’t make the connection at that time that you had…
No.
No and – I’m assuming that that means that nobody sat down and actually talked to you at length about it.
Yes they did…
They did?
… Yes, when I was trying to go off my medication, the psychiatrist I saw, that I’d seen in hospital was trying to tell me that no, I had schizophrenia and I should l stay on the medication. But I wasn’t satisfied with the way he talked to me, I found it quite upsetting. So…
Could you just describe what was upsetting about it?
It was upsetting because I felt like I didn’t have a choice of medication. Like I felt like I had to take the medication that he said. I didn’t realise there was – because that was RISPERDAL (risperidone), I didn’t realise that SEROQUEL (quetiapine) was available. And also I felt like he was quite paternalistic in that he was an older man and I felt like he was just telling me, you know that I would have the same outcome as my uncle who was not coherent and can’t function very well in the world.
Perceived stigma often became an issue from the moment of diagnosis. When Carlo received his diagnosis of bipolar disorder he felt the burden of an ‘added kind of weight of probably years and centuries I guess worth of perception’. Jenny was ‘terrified’ of being diagnosed as ‘schizophrenic’ because of people she’d seen on TV and on ‘the street’, whom she had previously regarded as ‘dehumanized’. Some admitted to their own confusion about mental health problems when they were first diagnosed (see also Experience of receiving a diagnosis).
People talked a lot about their discomfort or fear at letting other people know. Cindy said, ‘I don’t very much share it because I don’t want anyone to know’. Ann still had friends she hadn’t told because she thought ‘they wouldn’t get it and they’d probably treat me differently’. Ann told her parents and her brother about her diagnosis over e-mail but told them not to ask her about it.
Brendan described finding it difficult to speak to friends when he was feeling unwell. He experienced ‘shame’ and ‘guilt’ because he felt like he was letting others down.
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And so I stopped seeing him, I kept seeing the psychiatrist that I’d found out of the phone book and I saw him for a number of years. We had a pretty good relationship in that, you know, at times I lied about how I was going but when I’d come back and say, “Oh look, you know, things haven’t been going well, I haven’t been telling you the truth”.
And I guess he sort of said to me that, “You know, if we’re going to get anything out of this you’ve got to feel that you can be honest about this, about what’s going on”. Which I thought, ‘Sure, you know, you’re right, but I can’t be honest, even with my now wife, about what’s going on, so why am I going to be honest with you?’ You know, I’m not honest with my friends either at times, and I guess for me that’s always been the problem, is that when things go badly, or are going badly, I don’t really feel that I’m able to talk to people about it.
I think that’s it’s a real sense of shame that these are the things that I should be able to manage myself, and guilt about, that I’m not managing it and that I’m letting people down. Or letting myself down that, you know, I’ve got these expectations about what I wanted to achieve and what I want to do, and if I can’t deal with this, with life or what’s going on then I’m not, somehow I’m not going to be able to reach these goals.
Or I’m not successful. That, you know, I’m this person who maybe who can’t even handle life. So there’s no worth to me. And even though people might be saying, well my wife especially, my wife at the time was saying to me that that she cared about me and that she loved me and she, you know, wanted to see me get well or get help, it wasn’t enough for me to feel that I could talk to her about what was going on.
Several people said the feeling of not being able to talk about their experience of mental health problems was based on the struggle to meet their perception of other people’s expectations of them. People worried about not meeting social expectations, or being unable to contribute to family and community life. Ann said that she felt ‘useless’ when she was unable to do household chores. She described how she also felt guilty because her husband at the time had to look after her because ‘he didn’t marry a patient’.
David felt there was stigma attached to not living up to the ‘stoic male stereotype’. He said he learnt through his illness that ‘you’re allowed to experience emotions’.
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So, you know, I feel like, I don’t know, some part of me maybe needed to go through that to stop repressing everything all the time and trying to be the stoic male stereotype of, you know, not experiencing or not expressing emotions. You know, any form of showing the upset or crying or vulnerability was seen as weakness in my stereotypical sort of mindset of a male figure.
And now I figured out it’s okay. You’re actually human and even if that means you’re allowed to experience emotions, that’s what they’re there for. So yeah, it’s been a big learning process.
The people we spoke to talked about feeling concerned about how other people would react to finding out they took medication for severe mental health problems, had to attend therapy, or had to be hospitalised. Lisa said, ‘I felt really uncomfortable, like saying, “Well, hey, I’m going to be an inpatient”‘. Brendan felt taking medication indicated that there was ‘something wrong’. David described how he hadn’t sought therapy when he was at school because he had been fearful that ‘there’d be a bit of bullying and teasing around being at the counsellor’. In prison, Brian said you were a seen as a ‘wuss’ if you took medication.
When people did tell others, the way they responded could be upsetting, even if they meant well.
Lisa said she didn’t generally speak to people about her illness because of the responses she had received.
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I remember once telling someone that I lived with that… I was talking about, you know, my experiences of having an eating disorder and she was kind of like, “Which one did you have?” And I’m like, I was kind of like, “Well, anorexia, bulimia, take your pick kind of thing”. And I said, “Well, bulimia primarily, but I went through long periods of starvation and could fit into children’s’ clothing when I was like 16. I could shop in the kids’ sections of most clothing stores”. And so I said something like, “Yeah, well you know, experienced bulimia and stuff”.
And she was like, “Oh yeah, my God, like high five, me too”. And it’s just kind of like I don’t understand where this whole bizarre camaraderie comes from. It’s like, ‘Oh yeah, cool you’ve experienced a horrible life threatening disorder as well?’ ‘Yeah, me too, were you hospitalised for it and did you have your heart checked every week and did you have like no enamel left in your teeth and holes in your knuckles from shoving your hand down your throat?’ So I don’t talk about my experiences very often because I find that it’s not met with the best responses. And, you know, if I tell someone that I have bipolar disorder they’re like, “Oh, but you don’t seem crazy”.
A few people spoke about times when they had experienced rejection from others. Vanessa described how people she knew would ‘cross the road rather than speak to [her] and none of them ever kept in touch’. Helen recalled a priest visiting the hospital where she was staying and said he went to everybody’s bed except hers. She remembers thinking that it was because she’d attempted suicide, but another priest who had helped her told her not to worry because the priest who avoided her was ‘of the old school’. Alice remembered feeling ‘judged’ by a support worker when she worked in a mental health organisation. She thought this was possibly because she had shown ‘signs of vulnerability’.
Anna didn’t think she could work because she had to take regular time off. She spoke to someone from a mental health organisation but felt they didn’t understand her problem.
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I find there are a lot of people who are wanting to understand, but don’t get it. And it’s interesting with one organisation just recently, a mental health organisation that I expressed that you know I go into my downers, as I call them, and these can take several weeks. But I didn’t elaborate on that. I just said, “Oh you know what if I can’t do this because I end up you know, being sick again?” And I don’t call the mania or normal patches being sick, I call the depressive episodes because they’re the most debilitating for me.
But yeah, she said, “Oh look, we all have sick days. And you know that’s just the way it works”. And I thought you really don’t get it, what it actually means, and I think what people need to realise is how terribly debilitating it can be, to the point where you can’t cope with life anymore, and you can’t do anything anymore, that a general person of the same age and same life experiences can do. It carries on for weeks at a time. And it just affects every part of your life – your social life, your work life, your everything.
And it’s, yeah, it’s really something that I would love to get rid of, because I mean I’m at the point now where until this becomes more managed and controlled, I am unemployable because no employer is ever going to give me five weeks of leave every three months.
A lot of people talked about how their mental health problems had affected their relationship with family members (see also Family and Friends). It could be difficult talking with parents who grew up with different ideas about severe mental health problems and how to deal with them. Taylor said she thought the older generation didn’t believe in ‘mental illness’ and instead would think, ‘Well, what have you got to be depressed about?’ Allen said his mother and uncle were ‘not very well informed’ and took a ‘One Flew Over the Cuckoo’s Nest type approach to mental health’.
When
Jenny first heard voices she was ‘terrified’ she would be rejected by her family. She remembered visiting an uncle in a mental institution and thought she would end up like him.
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Well, that’s something I haven’t mentioned. And this is why self-stigma was such a big issue for me – my father’s brother had been diagnosed schizophrenic. And what had happened to him was, he had been playing cricket and hit a boy in the temple with the cricket ball and the boy died. And so he was traumatised and became mentally ill and attacked his father. His father called the police. They took him away and, you know, basically he lived in an institution on medications for a number of years. And then when I was about 12 or 13 I remember him coming to Melbourne and we had lunch with him at the [hotel]. Remember in the city, the old [hotel]?
But he could hardly speak. His tongue was so thick from medications, because in those days the medications were very severe and had a big impact on people. And he’d also had a lot of electric shock therapy and my mother was really, really critical of electric shock therapy. And I was only 12 and listening to these stories and hearing her opinion and I was terrified, you know, when I first heard voices.
And then when it started really impacting on my life and my daily living and you know, I’d get up in the morning and I’d be talking to my voices. And so I was terrified that I was going to end up, you know, like my uncle.
I also worried my father would reject me, because he had rejected his own brother and hadn’t really seen him much after he’d been diagnosed, although he did come to Melbourne that time. But our family moved to Melbourne and my father’s family were in [city] so he didn’t really see them much. And Mum says you know, my father had rejected him. So you just listen to these stories when you’re a kid and then you’ve got nothing else, have you? You’ve got, you know, you don’t know.
Some people had spoken to someone close to them about being unwell and felt ‘accepted’, which was a very positive experience. Ann ‘blurted it out’ to a friend who was very supportive. She said it ‘felt like a big weight was lifted off my shoulders’.
Paddy said he didn’t like hiding his condition and tried not to judge others if they didn’t understand.
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I was just going bananas in a way. Like I sort of got out of control. At work I was sort of, I was even swearing in front of customers and that. Not, not angry type stuff, like just, yeah. Just like using bad language in front of the customers and sort of, you know, can’t really do that. They were good, they were good to me. They gave me a warning obviously, but they said, “You need to pull your socks up”. But eventually I had to go to hospital, yeah.
Were they aware of your mental health condition?
Yeah but they said, “You’re getting out of control.” They had to give me a warning.
How did they find out about, is that something you volunteered at the outset?
Oh I’ve always been pretty open about it I think. I told my original employers and, I think they give you a form and obviously they don’t force you to, compel you to give your life, sign your life away. But I always just say you know, “Look, this is what I have”. So, I’m pretty open I think about my mental health issues, but yeah. That’s, I don’t know, within reason.
I don’t want to be too closed. I don’t like to be too much of a closed book with my condition so, I have the philosophy, if people don’t understand then I’m not judging them, but stuff them. Anyway, like they might have their reasons, they might have been brought up differently, so yeah.
Quite a few people felt it was important for those experiencing severe mental health problems to find ways to come to terms with their experiences and be more open. Carlo described it as ‘busting out of [his] own self-stigma’. But people also identified a need to ensure better awareness and more positive media coverage of mental health problems. Allen pointed out that newspaper reporting about incidents in which mental health had been a factor could be unhelpful: ‘like “Mad loon kills person in psych ward”‘. Anna said mental health was ‘something that needs to be talked about, and talked about, and talked about, until the stigma goes’.
Evan thought people, including doctors who experienced mental health problems, should be more open about being unwell.
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If there’s more people like me in the community who would not hide their illness and open up to their illness to the community, then we might have a more caring community I think. You know, I just came from a conference, a psychiatrists’ conference if you like. And they’re discussing and dialoguing now about psychiatrists that aren’t well, what should they do in those circumstances? Should they open up or should they hide the fact that they’ve got an illness?
And I was on the panel discussion and I actually spoke freely. I said, “Look you doctors here are humans as well you know. You have the potential of developing an illness as well you know. And if you do, what would you do in those situations you know? And I encourage that you open up”. Because it would be a risk not to themselves but it’d be a risk to their patients as well, it’d be a risk to the community in general too. And it will be a risk to themselves mainly, you know. So if they opened up about their illness and they can treated and be functional back in the community.
Luana described wanting to be a peer support worker because she thought there was a lack of positive role models for people with severe mental health problems.
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Well it was hard for me to accept that there are well people out there who have schizophrenia who are able to cope and function and work and have families and so…
Do you think in that context it would have helped for somebody to give you a bit more context? To perhaps pre-empt those kinds of fears and say this does not mean that you would…
Yes, definitely, yeah, that’s why I want to work in mental health to be a peer support worker or an advocate because I feel like there’s not enough positive role models out there with illnesses as severe as schizophrenia. You know when most people think of schizophrenia, they think it’s someone, you know, who’s going through a rubbish bin in the street or something. You know, eating out of bins or you know someone who obviously is talking to themselves out loud you know at the train station or something.
That’s how people think of schizophrenia, they don’t think of it as you know, there are normal people out there in high functioning, working in all sorts of different fields that, you know, have managed to you know maintain their health to a certain extent.