People with severe mental health problems have extensive experience managing their everyday lives, coping with symptoms, undergoing different forms of treatment, and dealing with stigma. They are well placed to give advice to others who might be facing similar issues and problems. Most people that we spoke to were eager to offer suggestions, drawing on their own experiences. Overwhelmingly they wanted to reassure others, telling them that ‘things will get better’, and emphasised the importance of ‘perseverance’ and ‘persistence’. Key areas of advice included looking after yourself, seeking help, relationships with health and mental health professionals, and maintaining social participation and relationships.
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Looking after yourself
Relationship with GPs and mental health professionals
Avoiding social isolation
Ann recommended that people find community supports, talk to others with lived experience of mental health problems, and work at establishing a good relationship with their GP and other mental health professionals.
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I guess the most important things I’d try and explain to people is that it’s really important to have a good relationship with your GP and your psychiatrist or psychologist or whoever you’re working with, so that you can be open and honest and ask questions, because particularly when you’re feeling unwell and a bit vulnerable it’s hard to ask those questions. So if you maintain a relationship with the same doctors over a long period of time it’s a bit easier to have those discussions.
I guess when it comes to things like medications and stuff like that and how to have your say, if a person has an outreach worker, perhaps getting them to come along to a psychiatric appointment would be really good, if they’re comfortable with it. Because I think that you know, outreach workers, if they’ve got a caseload of 15 people, that’s 15 different people on 15 different lots of medication. They’re going to have a bit of an understanding as to what some of the risks and benefits of different medications might be, so they might be able to advocate a little bit more strongly perhaps on a person’s behalf.
I’d also just recommend getting support from community supports, rather than the ones solely on medical supports because I think, someone told me once and this was in hospital, that medication only does 30 or 40 per cent, 30 per cent I think of the recovery work and the rest of it has to come from within. And the only way you’re going to start doing that is by getting involved in local community stuff and community groups or you know, if you’re getting support from a service like [mental health organisations] or something, they’re going to have group programs that you can become involved in.
So doing that and just talking to other people who are living with mental illness and finding out from them what’s worked for them, not necessarily what medications have worked for them, but what supports have worked for them and how they advocate for themselves and how they have those conversations with their doctor or their psychiatrist. I think that’s a really big benefit. And the other place I’d recommend people have a look at is some of the online forums.
Looking after yourself
A few people spoke about the importance of looking after oneself. Methods of self-care that were mentioned included learning how to manage or ‘accept’ symptoms or the illness itself, taking preventative measures to avoid becoming ‘unwell’, and seeking help early. Carlo suggested people remember that ‘mental illness’ is a ‘human experience’ and that ‘it’s okay that you’re going through this’, while Maria said she often advised others that ‘life is big, and [your] illness is a very small part of it’.
Jenny thought it was important to ‘learn’ how to ‘manage’ symptoms and described how she found joining a hearing voices group helpful.
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I think to a certain extent you have to go through a bit of the hard stuff, you know. Or it’s going to happen to you, whether you like it or not. I think you have those, like, if you’ve got voices, you’ve got to learn to manage them. You’ve just got to learn yourself. And, yeah, I would advise them to go to a hearing voices group.
I facilitate a hearing voices group through my work and that’s a group that is supported by [mental health organisation], and it’s a new, it’s a world movement. It’s been going on for about 20 years. Started by a guy called Marius Romme in the Netherlands. And [mental health organisation] group is a group where if you hear voices you can go along and you get support to talk about your voices and you’re encouraged to give your voice, different voices a name and to learn to practise and to learn to negotiate with your voice.
Some people mentioned the importance of avoiding things that could make them ‘unwell’, particularly those that could potentially create stress. Charlie advised people to ‘steer clear of alcohol and drugs’ and to have a ‘routine’ with taking medications. Susana recommended ‘trying to take things one thing at a time’.
Allen said he had learned to not ‘overdo it’ in order to stay well.
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Don’t overdo it, just work within your capacities. You know, just pitch yourself at 20 per cent below what you can actually do. And therefore on the occasions in life when you’re made to have to utilise that extra 20 per cent, then you don’t go over 100 per cent very often. Because 100 per cent’s where it all starts to break down. Whereas as if you could just pitch between about, you know, 50 and 80 or 60 and 80, then you can keep your life on an even keel. Whereas if you’re trying to push yourself all the time then, you know, you’re going to be close to a breakdown all the time. And that’s not healthy.
But it’s sometimes something that you make a trade-off with yourself. Like I say to myself I’m deliberately not going to lead so exciting a life because excitement often equals stress and anxiety. And stress and anxiety can be – it’s like the concept of the Pyrrhic victory. Like as in P-Y-R-R-H-I-C, you know, in terms of the Greeks who won a war many centuries ago. They won the war but the costs of them winning the war was higher than the virtue of the victory.
A few people spoke about the importance of knowing who is in your support network, as well as understanding what services are available and how ‘the mental health system’ works. Susana spoke about the importance of having a ‘good support team’, which for her included family and friends (see Family and friends). Others commented that having someone to advocate on your behalf or help to navigate the mental health system was also helpful. Chris suggested people create an Advance Statement, in which they can outline the treatments they will and won’t accept when they become unwell. As he explained, ‘like for me, I refuse to have ECT, (Electroconvulsive Therapy). I refuse to have that, because I know that my symptoms will go away over time’. (See also Support in treatment decisions, Support in life decisions, and How to increase participation in decision making)
For
Cindy, researching available treatments and services was important.
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If you don’t know the system, that’s the biggest problem. You don’t know what to ask for or what is the correct treatment. So I went into it very blindly, so maybe if people research more and then go ahead. Sometimes you’re not in the right frame of mind to do that though. You could even get someone else to help you. I think because then you can get more information about each service and what choices there are out there because that’s the hardest part, knowing what you can choose from.
Relationship with GPs and mental health professionals
For many people, good relationships with health, mental health and allied health professionals were seen as central to managing their daily lives, and to personal recovery. The GP relationship was particularly important. GPs were seen as a source of ongoing contact and support, a gateway to other professionals, and relatively affordable and accessible (see also Experiences with General Practitioners). A few people advised others to establish a good relationship with their GP. Susana recommended that people be ‘open and honest’ with their doctor.
Evan recommended others to see their GP when they need help and to go back to them if they are unhappy with the specialist they were referred to.
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So I think the best advice from me is to see your GP and see what your GP comes up with. I think it’s that area of discussion needs to be done through a GP about seeing a good psychiatrist. If you’re not happy with the one you’re referred to then you go back to your GP and say that to your GP.
You can get a second opinion now. I know a second opinion, the Mental Health Act has come in and with a second opinion area of work where you can, a second opinion scheme where you can be advised, not advised, where you if you feel like you want a second opinion you can go and ask for a second opinion. And it can be someone that’s not connected with this psychiatrist you’re seeing which is a good thing.
Usually second opinions in the past has been a colleague of your psychiatrist. So when he writes your second opinion he just supports him, so it’s not really a second opinion. A real second opinion is when you see someone that’s not connected with your existing practitioner. And that’s why the second opinion scheme is going be set up, where it’s going be a pool of psychiatrists in the department, where I can seek from that pool of psychiatrists, an independent psychiatrist to give me a second opinion.
A few people also recommended a collaborative approach to working with their treating professionals. For some, working collaboratively involved relating respectfully to health and mental health professionals. Simon recommended people to ‘treat staff as you would like to be treated. If you don’t want to be yelled at, don’t yell at them’. Other people felt it was important to develop a stronger sense of self in order to work productively with mental health professionals. Jenny felt that ‘respecting your own opinion’ and knowing what ‘your story is’ was important.
Allen argued it was important for people to have a good relationship with their ‘treating team’ because you can’t ‘rebuild a city while it’s still being bombed’.
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Well I feel for them in a way because I think in consumer mental health there’s a lot of unhappy campers that are sometimes a bit vocal. And I think that can make anybody lose. Because if you have a good relationship with your treating team, then they get the best for you and you get the best out of them. Whereas if you’re trying to virtually murder them all the time or remonstrate, then you can’t really fix the system when it’s under attack. You can’t rebuild a city while it’s still being bombed.
I mean I’ve had a privileged situation in mental health compared to some people that have obviously been really disadvantaged by their mental health treatment and their attitudes and their feelings towards practitioners and treating teams and psychiatrists and services and the like. But I haven’t really had that. I’ve had a pretty good. I mean apart from when I was in involuntary but whatever, that was a long time ago. I’m alright with them so I think maybe just be patient with people that are giving you a hard time and are criticising you and that are trying to change the system in, you know, one overthrow or one overhaul.
I don’t think the system can be changed quickly. But I think it can be changed a lot more easily if, you know, there’s mutual respect going on and the fighting ceases. Like, you know, you can’t really get to the bargaining table while there’s still a war going on. I think in mental health, consumer mental health, there’s still a war going on.
So I’d encourage, this is not so much for mental health practitioners, but I’d encourage consumers maybe to put the guns away and then those who are still interested at the end of that cycle, of which I’m probably not one can get together and see what can be done. But I think there’s a lot of relationship building, there’s a lot of bridge building that has to be done. And I think it needs to be for mental health consumers, some of them, to stop seeing mental health professionals, even those in high and powerful positions, as being the enemy or like powerful or all in it for money or something. And just see, at least some of them and probably many of them, as just normal human beings actually just wanting the best for the patients and trying to get there.
For several people, looking after themselves, including taking medication regularly and seeking help quickly if they were feeling unwell, was an important aspect of maintaining good relationships with health and mental health professionals. Brendan said that people should ‘get help’ when needed and ‘trust’ their doctors. For some people, remaining well meant that they had more control over decisions made about their treatment and care.
Charlie said she believes that if she maintains a certain level of wellness, she has more input into the decisions made regarding her treatment and care.
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If, at a certain point, you can get to a point where they make the decisions, but if you’re not at that point and you’re looking after yourself, then you make those decisions at that level. And if you communicate across, you know, psychiatrists, GPs and yourself and family and stuff, it works. I’ve got to say it works.
And so much of that mental health stuff is linked in with your physical issues as well, you know. It’s just better. It’s always in the back of my head, from my experience, you know, I need to keep myself at a certain recovery level because if, you know, you lose it, you know, sometimes, and it’s happened to me, you fall between the cracks and there’s no one to pick you up at that level.
And that’s what it did for me. I just got to a point and that was it, do or die. So I’ll make the best of it and I did and I’m pretty happy these days. Not always, but yeah.
Taylor advised people to see their GP if they were ‘feeling down and out’ for more than a couple of days.
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Some people might have all the symptoms but because, especially, I guess, the older generation don’t believe in mental disorders, you might talk to your parent and they might say, “Well you know, there’s nothing wrong with you” but you could have a mental illness where they don’t, they don’t like to talk about stuff like that because their generation never did, even though it’s been around for a long, long time.
So yeah you might think, “Well, what’s wrong with me? I don’t know what to do”. And you’ll have so many symptoms and then you get to the bottom of the pit and you just don’t know what else to do and you should seek help as soon as you can.
I think if you’re feeling down and out say more than two days I would definitely see a GP. It’s not just having a bad day as they say, something else is going on. So get it checked out and then your GP will follow it up and keep an eye on you and either send you – probably send you to a psychiatrist or a psychologist and put you on medication and just see how you go from there. But don’t leave it because it could get to the point where you would be suicidal and that’s not a pretty place to be.
Avoiding social isolation
Participating in work, school and community activities were nominated by several people as ways that people could participate in society and avoid becoming isolated. Evan recommended that people ‘get out in the community’, and emphasised the importance of school and work. For Ann, speaking with others and becoming involved with mental health organisations was important because ’30 per cent of the recovery work has to come from within’.
Luana recommended that people ‘interact’ with their community by participating in different activities such as yoga or joining a book club. If necessary, they could get a social worker or another support person to attend with them.
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I guess the main thing with mental illness is encouraging people to go out and interact within their community. To go along to different things like yoga or a gym or even a book club or just making sure they feel comfortable. And I think that’s really difficult because a lot of people with mental health issues stay, you know, home and they live with their families and they’re reluctant to go out and, you know, feel comfortable in different environments. So I think you know a lot of work needs to go into that kind of making people feel you know, more comfortable.
Do you have any ideas about how we could do that?
I think for some people it might, you know, involve like a social worker going with them, you know, to their first yoga class or their art class or accompanying them. And also making sure that they sort of, you know, feel like part of the community and like they don’t feel like we’re just pushed aside.
Paddy spoke about the social benefits of work and study and having other interests.
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Your mental health comes before anything else, like even your work. Yeah so it’s important that, having said that, I think, just personally, I’d rather be working at the moment and things.
Like, I think employment is good, even not just from the pecuniary nature of the beast but just the social thing and sort of the sense of purpose. So if you can get work. But if you need to study or that’s always handy but you know, like, yeah just keep occupied too. That’s, it’s really important to keep occupied, and even with a network of other people or friends.
Have interests too, like, you know like, I mean, I’m a dag so I have footy and, or music or whatever. It’s always good to have those interests too, so they might be interested, the client or the person, so yeah.
A few participants also spoke about the importance of people sharing their experiences with others to combat stigma and create a more ‘caring’ community, although Evan acknowledged that this could have ‘risks’. Carlo encouraged others to be comfortable in talking about their experience, saying he wished he had been more open with others when experiencing suicidal feelings.
Evan talked about the importance of being ‘open’ about your experiences with mental health problems.
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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 psychiatrist’s 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. And if you do, what would you do in those situations?” 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 be functional back in the community.
