Advice to others: People with lived experience of severe mental health problems

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.

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.

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.

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.

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.

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’.

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.

Taylor advised people to see their GP if they were ‘feeling down and out’ for more than a couple of days.

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.

Paddy spoke about the social benefits of work and study and having other interests.

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.