Box 12 A lived experience perspective: cultural considerations

“It started when I was in high school. I was 15. I was not coping at home. I was not coping at school. My fixation with food intake or lack of it, was something that I could control. After passing out a number of times, I was tested for everything from diabetes to possible brain tumours. The doctors just kept saying that they could not find anything wrong with me.

Throughout this time, I had body maintenance and being male, no-one could acknowledge or diagnose that I had an eating disorder. In Year 10, after collapsing in the playground at lunch, I was transferred to hospital by ambulance. It was a teacher that escorted me in the ambulance that made a comment to the paramedics that she thought I may be experiencing an eating disorder. At the hospital things started to change. I was not poked and prodded at, rather the doctors and nurses started talking to me about my thoughts, feelings and experiences. I was diagnosed with bulimia. I was given the label—but no-one really knew how to work with me. ‘I never worked with a male before’, 'it is not common in boys’, and 'you don’t meet the case studies that I have seen in research’ were common statements that the medical staff and allied health professionals like psychologists and social workers stated to me. The health workers struggled at times to engage with me. I already felt odd and out of place and then to be told that I was an 'anomaly' was so hard. I remember being given a booklet about eating disorders. I could not see anything in it that related to me. It told me that my periods would stop, and my breast development would be disrupted. Everything that a 16-year-old boy needs to be aware of. Being an Aboriginal male there was also very little information about eating disorders in community or any real cultural support offered. I am not sure that much has changed over the last 30 years. What I would like to see in the future is more recognition that eating disorders affect all people and is predominate in all cultures. It is important for young men to understand that eating disorders can affect them and to have resources and support tailored to meet their unique needs. It is also pertinent that health professionals work in culturally safe ways to support Aboriginal & Torres Strait Islander people and their families throughout their diagnosis and treatment journey. So for me there were at least four assumptions that were wrongly made that prevented me from getting help earlier. Firstly, it was about who has/ or can develop an eating disorder. The second was that that health professionals were looking for a certain body size. Thirdly, there was a cultural barrier, nothing that was Aboriginal-specific as a resource and lack of cultural awareness or cultural competence. Finally, there was also a gender barrier that involved both the fact the professionals that I worked with mostly non-indigenous females and I was a young Aboriginal male who didn’t meet the stereotypes of those with an eating disorder, as well as literature that aimed for female clients. It is now time to make changes to stereotypes and becoming more culturally alert to the diverse range of clients.

AJ Williams-Tchen, lived experience advocate and Guideline Development Group Member.