Evan's story about living with schizophrenia - video transcripts
Evan was diagnosed with schizophrenia at 19. He has been hospitalised once and over time has tried counselling and a variety of medications. Re-engaging with the community has been important to his recovery, as has work and having good relationships with his GP and psychiatrist.
Experiences with GPs
Evan: The one that I'm having now I've had for maybe 20 years or more. He's a friend of mine, a good friend of mine now, rather than a practitioner. Calls me his best patient. Isn't that cute! Anyway that's what he calls me.
You know, I'll tell you why he calls me his best patient, he said, "Evan," he goes, "you seem to come in here and you ask the right questions. You know I get patients coming in here, they don't ask any questions, they're not interested, they're not, they don't know where to go. They don't know, they don't want to get better. Whereas you have a curious mind", he said, "and you ask the right questions and I'm happy to answer them for you ‘cause I know that that's how you're going get better".
I just ask him you know, questions like, "Is this medication going work better in a week's time"? "In two weeks' time"? Or, "When is it going work better?" Or, "Is it going work better like the other medication?" I ask him sort of curious questions that make me ponder upon my recovery and my wellness.
And he says they're the right ones, yeah, so which is good for me. But I think it's important that people just don't walk into a practitioner's room without not knowing, not having a plan in action, not having a plan of questions that they want to ask them. You know, because he's there, he's knowledgeable, make use of it you know. That's what I see as a practitioner. He's done a lot of schooling to be like that and he sees other people of the same nature. So he'll be able to, he's the best person to guide you.
Personal recovery - clip 1
Evan: My parents grew me up in a religious environment. And so I've been religious ever since and I think praying to someone who's up above everyone is important. Because it's validating, it's having hope, it's asking for things to happen, I think. And also the church environment allows social connection to happen, allows friends to develop, allows people to see people who have mental illness worse off than themselves as well. Or see people better off than themselves with a mental illness as well.
Either path is just as therapeutic because if you see people worse off than yourself then you would try to step in and help that person. If you see people better off than yourself that allows you one day that you may become like them too. So either path is therapeutic and so you see a diverse range of people in the church from all different illnesses, different mental illnesses, physical illnesses. And you socially connect with people there too. And the church is also, I mean pretty good with church because the priest that I connect with he's a priest that knows me from a child, knows me before my mental illness.
And he's a priest, a family priest. You know, Greek Orthodox priests get married, he has eight children I think or eight grandchildren so he understands and he's had some children who've had some hardship as well. So he understands all those circumstances and he's given me a leading role in the church as well, in being a committee member, in running the church and I enjoy that, I enjoy that. And my wife actually cleans the church on a voluntary capacity. She goes there every week to clean the church and sometimes I go and help her too. So church has been very therapeutic, it's been communal, it's been community focussed, it's been an environment where, has led me to, I'd say, an accelerated recovery.
Support in life decisions
Evan: Very much so, very much so. It's an area or territory if you like of uncertainty. When a person develops a mental illness he gets to come to a point where he's uncertain of where to go or with decisions or making decisions. And, not only that, it's also whether the medication will work or not as well - that's an uncertainty.
There's an uncertainty on whether I'm going to sustain a job, there's uncertainty in whether it's going happen, whether I'm going develop a relapse in the future. All these uncertainties create the need for trust to be developed through a practitioner and my family people. For them to maybe make decisions for me when I can't make them, yeah.
Evan: But this counselling gave me a sense of motivation, to be able to go on with life and to be able to get interactive into the community. This form of therapy not only made me interactive in the community but made me become a soccer coach. Yeah and then advance to a soccer referee for [soccer organisation].Yeah, with a mental illness, mind you.
But I managed to do it and I did it successfully for a number of years. And now I'm at the local church, I'm on the committee and I help run the church as well. So I've had leadership roles in the community but I wouldn't have had those leadership roles if it wasn't for that, you know that therapeutic counselling that I got.
Negotiating daily life
Evan: There I was treated with medication - very sedative medication and then it was reduced to maintenance level. And then I got out in the community and gradually became a community person, if you like, with the other community members in the community. I tried to get back to work on numerous occasions, sustaining employment was the problem. I could get a job, there was no problem in getting work. The problem was sustaining a job for a long term period of time. And so I managed to get into a number of different industries, if you like, of employment.
I got into the finance industry, the retail industry, the real estate industry, the fashion industry, the funeral industry and also the, let me see what other industry? Oh so many industries I got into, different industries, diverse variety of employments I had. They were short term though, and that was the problem though. I couldn't sustain employment for a long time.
Personal recovery - clip 2
Evan: Well I guess in recovery there are people that are unique in their recovery. The definitions come right, left and centre about recovery and people talk about recovery. I think the main essence of recovery is to be hopeful. And also to never lose sight of one's abilities and to be self-responsible for one's actions and one's abilities. And to continue on with life as a normal human being like you were, like you are. And to get on with life regardless of having a mental illness.
And I think another part of recovery's accepting the fact that you've got a mental illness and getting on with life you know. I think the acceptance part is a big, big role. I've got my sister who's got bipolar, she accepts it now but she won't open up to the, she doesn't open up to everyone about her mental illness. And I think with that she's a little bit paranoid of who knows about her mental illness, who doesn't. And so she's still on recovery journey and she's trying to get better.
But I've always told her and I've given her time to think about this, that opening up about her mental illness in general will create a caring community, will create a caring community towards her too. So I think that… Yeah they're the essence of recovery. I think acceptance, self-responsibility, hope and just being a normal person in society, yeah.
Experience of receiving a diagnosis
Evan: Okay. Well, I first developed my mental illness in 1977, first diagnosed in 1977. But prior to that I just had symptoms of paranoia and I thought people were following me, I thought people were talking about me.
I didn't hear actually voices but I thought people were talking about me. I was paranoid about the way people were talking around me if you like. So, then it became problematic obviously and so I approached my parents. My parents could see that there was a problem. They took me to a number of GPs and I went to a spiritual healer, a priest of our local church as well. And through that I was told to just go home and it will just, it was just stress I was told back in ‘77, 1977.
So I went home and the problem became exacerbated a bit more. And I told my parents I needed to perhaps go and see the, the emergency department at a hospital. So I did. I went to one main hospital in Victoria, the emergency department. I actually went a few times there before I actually got to see psychiatrist if you like. And that psychiatrist finally, after a few visits to the psychiatrist, he decided that it was, I had schizophrenia and I was made an inpatient in the hospital for three months.
Discrimination and social responses to mental health problems
Evan: 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.
Experiences with mental health practitioners: Psychiatrists, counsellors and others
Interviewer: What qualities in him that could – that you would see as being key to what makes him a good practitioner?
Evan: Well, the quality is he treats me like a human being, he treats me like a human being. He treats me like a friend. Over the years when trust is built he doesn't sort of create boundaries you know. And we give gifts to each other you know, for, when I know Christmas is there, Easter time. And he respects my spiritual belief as well, which is good, he respects that. And when trust is built he opens up with some of his judgements as well. You know, they say that a practitioner should be non-judgemental but I say for him to be a good practitioner he's got to be human too. So he's got to have judges, judging in there too. He's got to have a bit of non-judgemental comments, but I believe that that should be put forward in the right time. And not only that, but also when trust is built, not in initial basis, Yeah.
Interviewer: Could you think of an example where he might have made a judgement?
Yeah, I can give you an example. For example, I'm talking about high school times, how I enjoyed high school times and he says this to me, yeah he went to [university] for example and I used to do community education around the schools. I used to go to school and talk about mental health and mental illness. And I told him about the kids there.
Anyway we're talking about [high school] and he says to me, "Evan did you see my name up on the board"? [laughs] I said, "What board"? He said, "The Honours Board". "Yeah". "I was dux of the year there." So that's just you know, he's bringing on his personal details to me and that's cutting the boundaries a bit and that's like being a friend with me. I think that shows good quality in a good practitioner. To be able to do that at the right time you know and to be able to show that he's not just a doctor, to be a friend to the person too, yeah.
Advice to others: People with lived experience of severe mental health problems - clip 1
Evan: 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.
Advice to others: People with lived experience of severe mental health problems - clip 2
Evan: 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.
Last reviewed: November 2017