Caring and community

Victoria’s Mental Health Act 2014 sets out as a key principle that mental health services should be provided ‘with the aim of bringing about the best possible therapeutic outcomes and promoting recovery and full participation in community life’ (section 11(b)). One meaning of ‘participation’ recognises the right of all citizens to be socially included. Many of the carers interviewed described the impact of caring on their social interactions with the wider community. (See also Impact of caring on relationships with family; and Family and Friends and Discrimination and social responses to mental health problems on our companion website on the experiences of people with severe mental health problems.) While a few carers said their involvement with people outside their family had not changed much because of caring for loved ones diagnosed with ‘mental illness’, many described feeling at times isolated from society.

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Silence and its consequences
Misperceptions about mental health and severe ‘mental illness’ in society
Supports in the community

When Rowan became the primary carer for his wife, he felt increasingly isolated because he said the hospital discharge process left him ‘flying on his own’.

The carers interviewed described different barriers to participating in relationships with others. One exception was Alexia, who said her work as a carer consultant led her to become involved with people from outside her own ethno-cultural background.

Tracey’s social isolation was fed by her feeling of being in a ‘bubble’ of ‘ups and downs’ caring for her partner diagnosed with ‘clinical depression’. By contrast, she felt life continued on as ‘normal’ for everyone else.

Silence and its consequences

Most carers spoke about feeling socially isolated due to their friends, colleagues and others in the wider community’s avoidance of talking about severe mental health problems. Sometimes carers consciously chose not to talk about ‘mental illness’ in the family. For example, Alex said his late wife thought talking to anyone about their son’s severe ‘mental illness’ would jeopardise their son’s career and marriage prospects. In other instances, it was the person being cared for who asked the carer not to discuss his or her mental health problems outside the family.

Julie’s teenage daughter did not want Julie to talk to anyone at her school about her experiences of depression.

While some people said their friends stayed away after they became caregivers, others described how they became self-isolated. Elena recalled how her family unwittingly isolated themselves from their social network. They stopped visiting neighbours and inviting people over because they felt unable to explain Elena’s son’s ‘unpredictable behaviour’ to their friends. By contrast, Rowan said his friends stopped seeing him because they felt ‘uncomfortable talking about his wife’s mental illness’. He described feeling ‘very much alone’.

Rosemary said the ‘enormous fear’ of ‘mental illness’ in the wider community left her feeling isolated in a ‘no man’s land’.

In contrast, others thought ‘mental illness’ was less hidden now than in the past. Long-term carer, Bev, and young carer, Tracey, said they thought discussion of ‘mental illness’ was now ‘more out in the open’. However, Bev observed there is still ‘a huge way to go’.

Sasha said mental health issues were ‘more spoken about’ in her regional town today than in the past. However, she felt she had not received much support from her community.

Misperceptions about mental health and severe ‘mental illness’ in society

Many carers talked about what they saw as widespread but inaccurate beliefs about people experiencing severe mental health problems. They felt these beliefs caused the community to be fearful of people diagnosed with severe ‘mental illness’ and avoid interacting with both them and their carers. Several carers recalled how they themselves had felt fearful when they were first told of their family member’s diagnosis. Kate said finding out about her brother’s ‘diagnosis of schizophrenia’ was ‘very confronting’. She attributed this to ‘misconceptions’ she had had about ‘mental illness’ at that time. However, this was not the case for all carers, including Saskia who said she had had no ‘preconceived idea about schizophrenia’ before her sister was diagnosed. Later on, Saskia said she observed people’s reactions when she told them about her sister’s diagnosis. Their responses made her ‘realise’ that the common (mis)understanding of schizophrenia caused many people to feel their own ‘safety was at risk’.

The main beliefs that carers felt created ‘fear in the community’ about people diagnosed with severe ‘mental illness’ were that they could be ‘violent’ or ‘aggressive’; that ‘mental illness’ was linked to criminal behaviour and that illicit drug use caused mental health problems. Many identified media portrayals of severe ‘mental illness’ on television and movies as one main source of common misconceptions about people diagnosed with severe ‘mental illness’. Elizabeth talked about her concern that media portrayals of people diagnosed with severe ‘mental illness’ as ‘violent’ predisposed members of the public to feel afraid of someone like her ‘very tall’ son.

James described how widespread beliefs that linked severe ‘mental illness’ to illicit drug use and crime were mistaken in his son’s case.

Saskia talked about the common belief that people diagnosed with severe ‘mental illness’ posed a danger to others. She said this was an obstacle to the social engagement of carers and the people they care for.

Supports in the community

Many people suggested ways of supporting carers to feel more included in society. They considered improving the community’s knowledge through education about severe ‘mental illness’ was important to address common misperceptions about severe mental health problems. Some recommended increased social interaction with people experiencing severe mental health problems would help reduce fear in the community. Bronwyn said many people did not realise that with the right medication and support from health practitioners and family, people experiencing severe mental health problems could live and function ‘like anybody else’. She said many people probably ‘worked right beside’ a person with severe mental health problems and did not know it.

Katherine described how her first-hand ‘exposure’ to her son’s mental ill health problems meant she felt comfortable talking to strangers who appeared ‘unwell’.

Saskia emphasised the need to educate the wider community about what living with severe mental health problems ‘really is’ like.

Some carers described existing supports that helped them open up lines of communication and create relationships between themselves, the persons they cared for, and the wider community. A few carers described how, over time, they became comfortable discussing their loved ones’ mental health problems with others.

When Bev’s son moved into his new unit, Bev talked to his neighbours about his severe mental health problems. Bev said they have provided ‘fantastic’ support for her and her son since then.

People often ‘opened up’ to Julie about how mental ‘illness’ had touched their own lives when she told them about her daughter’s experiences of depression. In response, Julie said she would ’empathise’ or share information about existing supports.