When living with a chronic illness, especially a rare chronic illness like mitochondrial disease which I battle daily we not only have to advocate for ourselves within the medical system, but EVERYWHERE else in our lives. We have to advocate for our unique needs at school, work, with our friends and family, our children’s teachers, and others within our communities, and this is all WORK… it is constant, and it is exhausting. With illnesses that have a long span (16 yrs and counting for me) I know how difficult it is… and I have sometimes found myself withdrawing and not wanting to even engage with other’s, at least other’s who are “healthy” and “able-bodied” and just close myself off in my little world of few whom require no advocating, no explaining, no additional health discussions and stay in my little world. I might do this for a brief time, but then I always force myself to come back out of my shell and into the world because as hard as it is, I know I have made a great impact on many who have come into my life and helped open others eyes to the serious struggles living with rare illness, chronic illness, and invisible illness, and little by little these efforts add up and help to create the change that we need to see in our society where people learn to understand what it is we are truly going through so there will be more acceptance, more support, more funding for research to cure these diseases and save lives. I see you, I know how hard it is, but you have a duty in your position to do your best to advocate for change, and it is worth it!
Comments