Finding Light in Unimaginable Darkness
During the early months of 2019 I received a life-changing diagnosis. What made this particularly uncommon, was the fact that all my children also received the same diagnosis. We very quickly found out that the disease is degenerative and incurable. As a result, we tried to find some supports so we could get the help we needed at such a difficult time. What we found was that while there is a great deal of information and support for a single family member when experiencing life-limiting or chronic illness, there is little known of families with multiple sufferers of these illnesses. This left me feeling isolated and extremely worried about my ability to support my sons as well as manage the illness myself. As a result, I started my Doctor of Social Work at Charles Sturt to find out how we can create resources and help other families that have fallen through the cracks. Ultimately, the research that I am undertaking aims to explore the experiences of families where two or more members have been diagnosed with chronic or life-limiting illnesses.
Taking into account the lived experience of the researcher and her family, a hermeneutical phenomenological study will explore the subjective experiences of family members. By gaining an understanding of these experiences, I will develop insight into how such families form coping mechanisms and the type of resources needed at the time of diagnosis. Findings will be disseminated through publication of a thesis, expected journal publications and conference presentations. Additionally, I have presented on the radio, which is now a podcast, as well as promoting my research and story generally, in order to gain as much awareness and support as possible. The significance of the research findings will be to increase knowledge of experiences of such families; to provide guidance from a client focused perspective for policy makers in the social work field; the creation of tools and increased knowledge for social workers and allied health professionals working with relevant individuals and their families; and to develop resources for relevant families at the point of diagnosis and beyond.
Diane Cass is studying a Doctor of Social Work. Her drive comes from the shocking diagnoses in 2019 of mitochondrial disease that she and all her sons received. Diane is striving to develop resources to help others who are facing similar life-changing circumstances. Mitochondrial disease is degenerative and incurable.