"There are still all of these stereotypes of people who are sick," says Edwards, who also has celiac disease, an immune disorder. "The biggest is that it is somehow our fault."
Blame and stigma trail people with conditions from AIDS to obesity, she says.
Those attitudes are rooted in history and human nature but come with a twist today: Many people may believe that medical science has advanced to such a degree that there is literally no excuse for an incurable illness. Those who suffer from poorly defined conditions such as chronic fatigue syndrome and fibromyalgia bear an extra burden, she says: Even some doctors doubt they are as sick as they say they are.
Women, in particular, she says, still risk being labeled "hysterical females" if they come to doctors with symptoms that can't be easily diagnosed or that don't respond to treatment.