Sunday, September 16, 2012

Politically invisible

Today is the last day of Invisible Illness Week. About two weeks ago I realized it was coming and thought, Already? Damn, I have nothing new to say.

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?"


Meg said...

I appreciate your thoughts on this, Susan. I think Samuel is right. It really isn't how we appear to the public that causes the disconnect between our physical reality and our appearance. Women who get breast cancer are usually healthy and active at the time of diagnosis, yet no one questions the seriousness of their disease. Friends and family and others often make enormous efforts to contribute to the care of cancer patients, although it may not be until these patients begin chemotherapy that they start to feel ill and look ill.

But cancer used to be the disease that couldn't be named. Susan Sontag speaks about it brilliantly in her book "Illness as Metaphor." There is so much more awareness and research about cancer now than for many of the invisible illnesses.

On the other hand, invisible illnesses are often chronic; they go on and on and on. There is not much that others can do in the way of help that appears to make a significant difference. Patients whose cancer does not respond to treatment will also fall into the "invisible" category. As Ken Wilbur pointed out in his book, "Grit and Grace," no one likes chronic.

It's complicated, isn't it? To be "politically invisible" on top of having a life-shattering "invisible" illness can put us at the bottom of the compassion heap and add to our suffering.

Meg said...

Make that "Grace and Grit."