People who experience severe mental health problems often search for information to better understand the symptoms they might be experiencing, to learn more about a diagnosis they have been given, or to research treatment options.
In recent years, the internet has become an increasingly important source of information and support with the development of numerous websites detailing information and the availability of different services, as well as online forums and interactive communities. However, more traditional forms of information such as pamphlets, brochures, flyers and books remain popular and are often given to people by health professionals.
Libraries are a good source of books or specialist academic literature. Learning from other people’s experiences through peer support groups can also be a valuable source of information. Alternatively, some people engage in mental health study or work as a way to source information and learn more.
This summary is about the experiences of people we spoke to who searched for information about their mental health, including diagnosis, treatment, medication, and support services. It is important to acknowledge that not everyone searched for information. Those who did so discussed the sources from which they had obtained information and the quality and relevance of the information they found. For more information about mental health, please see Resources and Information.
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Searching for information
Sources of information
Quality and relevance of mental health information
Searching for information
Some people described how they actively searched for information, while others said they were less interested in finding information. Brendan said, ‘I was given some information, a pamphlet or something about, you know, this is bipolar, or whatever. I don’t think I ever really googled it or anything myself’. In contrast, Maria described ‘writing articles’ about information she had read about online and then sharing what she had written with others.
Tanai undertook a thorough search for information to help her understand her mental health condition.
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It sounds like you’ve done a lot of research. Could you talk about how you’ve gone about that and what’s been helpful?
I don’t have any formal education with any of it. This is all just stuff that I’ve kind of tried to find myself. I was always really into it and very into philosophy which has helped a lot. I just, since I was about 13, I just started finding whatever books and stuff I could – journals, and studies. That’s all I’ve done, just read it all.
So you’ve gone and googled academic stuff?
Yep! I have a subscription to the International Journal of Eating Disorders which is where I get a lot of my research stuff for the papers that I’m writing. Just lots and lots of books. My goal is to go to Uni next year. I want to do a couple of individual units and then start a psychology thing. Ultimately I’d like to be a psychologist, like to work with eating disorder people. Like that’s my main kind of goal.
Searching for information was most commonly undertaken after a diagnosis had been received. Anna described how she ‘relied’ on the information she searched for herself each time she received a new diagnosis from mental health professionals. Alice and Allen also searched for information directly after receiving their diagnoses, to supplement the information given to them by health professionals. For some people, it was important to continue searching for information throughout and well beyond their periods of being unwell, to keep themselves informed in light of the evolving nature of managing illness and recovery, and the provision of mental health care. A mental health diagnosis or diagnoses prompted several people to consider studying or working in the area of mental health, to learn more or to help others.
After her first hospitalisation,
Lisa was motivated to change her university degree from law to psychology, which gave her a ‘greater understanding of the mental health professions as a whole’.
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Could I ask what other changes you have made that you feel has helped?
I think it’s kind of taking quite a natural course but also, I think having worked in, when I was at university, when I first started I was studying law, God knows why. And after I went back after being released from hospital I changed my major to behavioural science, psychology. So, and I don’t know, I think at that point I was looking for answers and it didn’t provide me with anything. But, it certainly provided me with a basis for greater understanding of I think of the mental health professions as a whole. And it’s partially why I’ve chosen to work in this field. I guess one of the main requirements of being in a role like mine is that you have a lived experience of a mental illness.
A few people talked about the benefits of the information they found. Some said it helped them ‘figure out’ more about their health condition such as symptoms, diagnoses, prognoses, and management options. This helped them to better understand what their diagnosis meant for them and what treatment and care options were available. Others said that searching for information themselves helped provide a broader perspective to the information given to them by health professionals.
Allen described the information he used to learn about his condition after he was first diagnosed.
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Some people have talked about that experience of diagnosis, I was just wondering what your experience was?
I think it was useful in the initial stage because I could look up the diagnosis and literature and, I mean there wasn’t the internet around then really. But you could find books and, what was it? Was it MIMS or – is that the drug manual? Or what’s the other one? DSM. Like you could look up DSM and you could say ‘Okay, so this disorder is supposed to mean this’. And you could read about the disorder in that way and you thought, ‘Yeah well’. I mean for a while I really didn’t think it did describe me but later I thought it probably did describe me.
Sources of information
People spoke about several different sources of information. The internet was commonly mentioned, but people also mentioned books, academic literature, talking with health, mental health and allied professionals, and finding information through studying or working in the mental health field.
Jenny’s insights into her mental health condition were obtained from a number of sources, including through reading and talking to her social worker and psychiatrist.
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It also sounds, when you were talking before, that you’ve got a lot of insight into, I guess, cognitive processes and that idea about communication and how that’s related to experience. How do you think you get those insights?
Yeah, how? Just through living. Just through experience. Just through all the work I’ve done, reading and talking to [social worker] and a lot of what she was trying to teach me, which I fought against. Because I didn’t want voices in my head, you know. I didn’t want to have anyone talking in my head. Because of the guy who had tormented me when I was a kid, you know. So just that, talking to the psychiatrist, probably the cognitive behaviour thing. Just years and reading and, I don’t know, just gleaning things from, because I don’t watch TV, so gleaning things from goodness knows where.
Several people felt they had gained more useful information from their own searches than that which was offered to them by mental health practitioners. A few mentioned that the internet did not exist when they were first diagnosed, and said this was unfortunate as it was a ‘great’ source of information. Carlo found that some doctors gave him information about his health and some did not, while Alice felt she didn’t find information from either her mental health practitioner or through her own initial searches particularly helpful.
In response to not receiving enough information from a mental health practitioner about her diagnosis,
Anna turned to the internet.
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Yeah it’s interesting. I have relied on Doctor Google, as I call it. So my own internet research, to actually gain a better understanding of my diagnoses because there’s very little information given. What I’ve found is that I’ve been given the checklist of symptoms, but what it actually means for me and what it means in terms of treatment, and what it means in terms of prognosis, all of that hasn’t been given to me. And I’ve had to source out that information myself. I’ve relied extremely heavily on the internet, and I’m grateful that it’s there because otherwise I really would know nothing.
Quality and relevance of mental health information
The amount and nature of information changed as people’s understanding of and management options for mental health conditions evolved. Many people discussed the quality and relevance of the information they found or were given. Searching for information helped a few people keep abreast of the changes in diagnosis and management options for their mental health problems. Allen and Alice each discovered that the initial information they had found became redundant when the definition of their diagnoses changed over time.
The information offered to people reflected legal changes in the way people diagnosed with mental illness are treated. Anna and Alice both mentioned that the amount of information on mental health available in the public domain has increased significantly over the years, although Alice felt that mental health websites could be improved in terms of language and content to make them better tailored to people who had a received a psychiatric diagnosis, or who were experiencing distress.
Alice found that over the years, information about mental health has ‘evolved’. She thought more ‘friendly language’ should be used in mental health information.
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I was very much, you know, what people around me would call fighting the system, for probably a good 12 months. You know of fighting and kind of looking at whatever limited information I could get on the internet. So what information did I get? Oh look, again, I don’t think I ever printed them up. But at the time there wasn’t a lot on the internet, like you know over the last few years it’s definitely evolved quite a lot. So it would kind of, you know, probably be like a Wikipedia type analysis of what psychosis was.
And basically I think that the definition even changed over the last few years: it’s like one out of touch with reality as opposed to an earlier definition. It said something like a higher level of consciousness. So you know it was kind of like I wasn’t really getting much to help me. I wasn’t really getting much to help me ascertain what was going on in, I guess, a mental health practitioners head to judge me in that way. I wasn’t getting a lot of insight from just desktop research on that sort of stuff. And I even felt that when I was asking them, I wasn’t getting the information that I needed to help me figure it out.
So you mentioned that there wasn’t much information back then on the internet, as you know we’re producing a website. Was there any information that you were looking for then that you think should be included in a website like ours?
So I think some kind of more friendly language around what the Mental Health Act means. So, you know, I think when someone’s suffering ill health, the last thing I think they need is the black and white textbook type answers, or the legalistic terms. Yes, we all need to be apparent, like we need to be aware of those. But I think it needs to be meaningful, you know, and yeah I’m the first to say like, mental health doesn’t discriminate against education type. But you know it’s kind of very legalistic terms.
So I think your other options need to be available as well. So what options are available within the region that I’m in, or what do the different organisational groups do. So, you know, I think Beyondblue from memory, just refer you on to a psychologist, I don’t even know whether they’ve got a link to the CAT team or anything like that.
