I’ve been doing a lot of thinking about trying to get services and support for the Young Adult Metastatic/Advanced/Chronic Cancer Community. It has been my experience that there is a huge hole and a bit of disconnect in what is available out there. The Young Adult Cancer Community’s main focus seems to be about supporting individuals through and after a cancer diagnosis. Don’t get me wrong, this is important work.
The advanced metastatic community is mostly made up of older individuals who have been diagnosed with cancer at the end stages of their lives. The support and services that older populations need are very different from the young adult population. I think for many AYA organization the intent is to support the YA community as a whole regardless of diagnosis or stage. What ends up happening is that the voice and the needs of our community gets lost and to be brutally honest, sometimes forgotten underneath the louder voice of the majority. I have attended numerous Young Adult Cancer events in my two years of living with Metastatic disease and often I walk out of the room in tears feeling even more isolated then I walked in. As I network with more and more Advanced Young Adults, I realize that I’m not alone in my experience. We are a minority of a minority.
I know from my discussions with some Canadian young adult organizations that there is the start of movement, an awareness and a voice surrounding our community. I think that often there is a lack of clarity and understanding on what our needs are and how best to provide services that support us. This is not an easy task, and I think we as a community are also not sure what we need. All we know is that we are different and we don’t fit. What do we do with a small group of people that don’t quite fit? How can organizations with limited resources to support a marginalized community with very different needs?
I truly believe that the only way to move forward is through collaboration. Collaboration between young adults with advanced cancer. Collaboration between young adults with advanced cancer and young adult cancer organizations serving them. Finally and most importantly collaboration between young adult cancer organizations.
I don’t believe one organization can or should be everything to everyone. I believe that each and every group has a strength that can be contributed to the movement as a whole. I think there is an opportunity here to gather knowledge, experience and resources. Together we can stand as a community and create change. If we tie together the threads of individuals and organizations we can create, what I like to refer to as a tartan of support. To be sustainable this initiative has to be more then a grass routes movement initiated by patients. We need the support and collaboration of established young adult organizations to make this holistic, meaningful and sustainable.
At least, being in my 50s, I have friends and relatives who are dealing with the illnesses and losses of aging. It is important work you are doing to shore up the gap in support for young adults (including you).
Thank you. Its both exciting and frustrating at the same time. I’ve been doing a lot of poking and prodding and I’m starting to get some traction which is really exciting. Defining the gap and figuring out how to fill or bridge it is a work in progress. Its so important too that this is not just based on my beliefs and way of looking at met/advanced cancer. It has to be a voice that speaks for the community. This is something I’m working on and trying to wrap my head around.