It is amazing how much of our identity comes from what we accomplish and what we "do," not who we "are." The first thing people ask when we meet is, "What do you do?" The perception is that our job is who we are. This is very frustrating for people who are out of work or on disability. It makes us feel like our identity has been lost. We are no longer doers, even though we still have value as people.
Fibromyalgia and chronic fatigue are invisible diseases. You can't tell from looking at us that we are sick. When we look fine, people tend to think we must be fine, even when we are not. This leads to the idea that we are lazy, even though many studies show that our drive to perform and "do" may have contributed to our disease. Some people, including doctors, look at our healthy appearance and call us liars. I would not have spent thousands of dollars searching for an end to this pain if I was a liar. I wouldn't have contemplated suicide as a way to stop the agony because I wanted you to believe I was telling the truth.
Many of us are forced to drop out of school or go on disability because of the pain and fatigue. This is heartbreaking because we feel like failures. We are no longer doers, so we are nothing in your eyes. We have failed you and ourselves. We mourn the loss of our identity. Strong emotions cause physical pain for us and this makes life even more unbearable for us and for you. Statistically, 75% of people with chronic illnesses get divorced. We also have a higher rate of suicide. Why would we lie to get this kind of attention?
Many, like me, are able to work long hours at their jobs. However, that is all we are able to do. As the week progresses, I find myself getting weaker and the brain fog closing in. By Thursday and Friday, I am lost in a fog of pain and fatigue. It feels like I am asleep and have no idea what is going on around me. I crash every weekend. I crawl up in bed and sleep for hours on end. I wake long enough to eat or do the few things I have to do and then crawl back in bed. This is the only way I can manage to keep working each week. I have to give up everything I enjoy, including socializing with family and friends because I don't know if that will be what makes me crash for three days. I may not look sick, but this isn't the way I would choose to spend my life.
Invisible diseases are no less real than visible ones and who we are is as important as what we do.