Then I read a blog post arguing that the whole "invisible illness" concept was harmful and we shouldn't be using it to raise awareness anyway.
But I'm getting ahead of myself. For those of you who are just tuning in and have no idea what an invisible illness is, I'll quote from an older post:
What makes an illness or disability invisible? Two things. First, the people suffering with it often drop out of sight. Your friends don't hear from you for a while, figure you've lost touch for the usual reasons friends do, and have no idea that your chronic pain or crushing fatigue prevents you from leaving the house most days. Second, if they do happen to see you again, you probably appear perfectly normal. Your disease hasn't caused you to break out in scary hives or turn blue. The very fact that you're out in public probably means you're feeling/functioning better than usual.So advocacy for invisible illnesses like ME, fibromyalgia, Lyme disease, and Gulf War disease should be pretty straightforward, right? Point out how those diseases exist even though they're hidden from view, and you dispel the prejudices of the previously uninformed.
According to Samuel Wales of The Kafka Pandemic, however, there are a number of problems with this approach. The one that stood out to me was this: healthy folks aren't prejudiced against all so-called invisible illnesses. We accept that diabetes is real, even though diabetics managing their disease don't look any different than anybody else. Patients with HIV/AIDS seem healthy much of the time, and no one accuses them of faking it. Appearing healthy, or being housebound and hidden from view, doesn't automatically mean people won't believe you.
The problem is that certain diseases are denigrated. Politically invisible.
While I'm not sure I'm convinced the term "invisible illness" is actively harmful, I like Samuel's alternative approach. When faced with a person who's skeptical about a disease that doesn't always make people look sick, respond with this: "Would you say that about AIDS?"
