I was devastated. I had never heard of CFS. I had heard of fibromyalgia but not enough about it to understand what it meant. I went home and Googled both of them. I read medical websites and people’s personal stories. What I took away from my Google search was that doctors diagnosis illnesses like CFS and fibromyalgia when they can’t find anything else wrong, there are not a lot of options for care, that there are an unbelievable amount of possible (and horrific) symptoms, no one really knows the cause of these illnesses, most people are sick for the rest of their lives and there is a lot of stigma attached to both of them.
I found people who were so sick they couldn’t get out of bed, work or live any part of their lives and there was literally nothing they could do about it. These people spent the majority of their time justifying their illness. My devastation turned into anger. This was so wrong. I knew I had to correct this injustice.
I told everyone I could about how sick I was. I talked a lot about how CFS and fibromyalgia sufferers needed help. I posted about it on Facebook and started a blog hoping to bring awareness and support. I waited for the rally cry of those around me that they were not going to stand for my suffering. I had seen rally cries for other people that I had known when they had received devastating diagnoses. I thought for sure I could be the champion for the CFS and fibromyalgia cause.