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The SANE Blog

Meet Sarah.

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Sarah was 15 years old, when her eldest brother Peter, then 21, was 'coward punched' at a party, resulting in a broken jaw and an acquired brain injury. One year later, in 1992, her youngest brother Ben, aged 17, was diagnosed with schizophrenia. 

These events marked the beginning of a journey that would not only bring challenges but also inspire a lifelong commitment to mental health advocacy. 

Growing up in a household with two brothers who had significant health challenges, Sarah and her family faced many difficulties. "My brother’s diagnosis had a big impact on me and my family," she explains. “There is an extreme lack of understanding from the general community about this diagnosis – people do not know what to say to you ... we became very close-knit as a result of the societal attitudes that exist – we had to rally around as a family to provide support and companionship to each other.” The struggle to balance her education with the demands at home was tough. "During my early uni studies, I found it very difficult to study, as both my brothers lived at home. They were bored, with nothing to do, but they did not receive any support to keep them engaged in the community … my father had to take a year off work to care for them." 

Despite the hardships, Sarah and her family found solace in shared hobbies and passions. "Our entire family has a love of fishing. When we were young, we went on many camping trips along the River Murray. Even now, myself and my brother Ben go fishing with my dad and my own children," she shares. Music also played a big role in their lives. "Our family grew up listening to great Aussie bands, such as Cold Chisel, Crowded House, the Hunters and Collectors.” 

Sarah’s lived experience has shaped her perspective on mental health and the importance of advocacy. "Growing up with a lived experience, both my parents protected me significantly from all the stress and bureaucracy of the ‘mental health system’ and the lack of community supports and truly person-centred care," she notes. This protective shield also extended to the stigma that exists in the community. "My parents protected me from the significant amount of stigma and the many myths held by community members about schizophrenia." 

Sarah’s involvement with the Education Group of the Schizophrenia Fellowship in South Australia (now Skylight) was transformative. "In this group, we received education about schizophrenia and travelled around speaking to different community groups to educate them about the illness," she recalls. “Myself and my mother were very lucky to attend a media training workshop with the late Anne Deveson. Anne and Dr Margaret Leggatt co-founded SANE. Anne’s book “Tell Me I’m Here”, about her son, Jonathan, was a great introduction for me in learning about Schizophrenia, and the barriers faced by individuals with this diagnosis.” This experience inspired Sarah to pursue a career in clinical and forensic psychology, aiming to influence the mental health system from within. 

Sarah’s motivation for sharing her story is clear. "I commenced state and national mental health advocacy to improve mental health service provision. However, with the commencement of the National Disability Insurance Scheme (NDIS), my focus has now shifted to improving the NDIS," she says. " Since my brothers first received their initial NDIS plans in 2019, they have not been hospitalised, which is a huge change for our entire family, with much less trauma experienced as a result, not to mention the financial savings… improved community supports work!” 

To those navigating similar challenges, Sarah offers words of encouragement. "Know your rights, familiarise yourself with the Carers Recognition Act, join local support groups, and join the online SANE carer forums," she advises. "Peer support will be your best friend for learning how to access and navigate services." 

Sarah’s advice for seeking help is straightforward. "Don’t be afraid to ask questions, ask for clarification, take notes to care team meetings, write things down, and seek peer support," she recommends. "If your family is eligible for the NDIS, access support to make an application… it is worth it." 

Sarah’s story is a testament to the importance of creating awareness and reducing the stigma surrounding schizophrenia. "It is so important to create awareness and share our family story to reduce the stigma surrounding mental illness and challenge the many stereotypes and negative attitudes that persist in the community about schizophrenia," she emphasizes. "My brothers are gentle, caring, and kind, sensitive souls. They deserve understanding and support, not fear and discrimination." 

Sarah’s journey of resilience, advocacy, and unwavering support for her brothers highlights the power of family, community, and education in overcoming the challenges posed by complex mental health conditions. 

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