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?"

Invisible illnesses and media bias: Comment advocacy

A little while ago, I ran into fibroPR101 on Twitter. As her handle suggests, she does public relations for organizations that support people with fibromyalgia and other chronic diseases. I asked her (in 140 characters or less) for advice on how to get the media to dig deeper when psychiatrists make claims about ME/CFS or fibro being psychosomatic.

Here's her response, in more than 140 characters.

Out of sight, keep in mind

September 14–20 is Invisible Illness Awareness Week. If you have friends or family members with health problems, now would be a great time to give a call, see how they're doing.

What's that you say? You haven't spoken to them in a while because they never stayed in touch? All the more reason to call. Chances are they really do want to maintain contact with you. They've just been too overwhelmed by their illness and activities of daily living to manage it.

If you don't know what an invisible illness is, look over here.

Imaginary treatments for real diseases

Sometimes I count it as a victory when I manage
Just to drag my aching body out of bed
The doctors, mystified, could not produce an answer
So they told me it was all in my head

-- Everybody Knows About Me

The person who inspired the song "Everybody Knows About Me" pointed me to a New York Times article last night. According to this piece, half of doctors regularly prescribe placebos.

The most common placebos the American doctors reported using were headache pills and vitamins, but a significant number also reported prescribing antibiotics and sedatives. Although these drugs, contrary to the usual definition of placebos, are not inert, doctors reported using them for their effect on patients’ psyches, not their bodies.

The bioethicists are having a field day with this one. On the one hand, it's wrong for medical practitioners to lie. Patients trust doctors to know more than they do (though many with obscure diseases like ME/CFS often find themselves having to educate their own physicians), and to provide valid information and treatment. Prescribing medication that has no clinical effect on the illness is a clear betrayal of that trust. On the other hand, if the placebo effect actually works, then the doctor has in a sense provided real treatment ... right?

Well, not so fast. Scroll a few paragraphs down, and we find this telling quote:

Dr. William Schreiber, an internist in Louisville, Ky., at first said in an interview that he did not believe the survey’s results, because, he said, few doctors he knows routinely prescribe placebos.

But when asked how he treated fibromyalgia or other conditions that many doctors suspect are largely psychosomatic, Dr. Schreiber changed his mind. “The problem is that most of those people are very difficult patients, and it’s a whole lot easier to give them something like a big dose of Aleve,” he said. [Emphasis mine.]

Readers with fibromyalgia or ME/CFS or similar are at this point already throwing things at the screen, and don't need me to explain what's wrong with the good doctor's argument. But for those of you who are unfamiliar with fibro, here's a breakdown:

1. Fibromyalgia is a real disease. It is formally classified as such in the International Classification of Diseases under Soft Tissue Disorders.
   
   
2. Instead of bothering to do any actual research, Dr. Schreiber simply assumes his fibro patients are being "difficult."
   
   
3. He prescribes medication that not only doesn't help, but might cause harmful side effects. Fibromites have enough pain in their lives without also having to deal with gastrointestinal problems.
   
   
4. The doctor gets paid for dispensing treatment he knows to be clinically ineffective.

"Everybody Knows About Me" contains a passage describing how some medical professionals write off real pain and suffering as "all in your head" instead of admitting they have no idea what's wrong. That really happened to the guy I wrote the song about. Maybe he was lucky, though. At least the doctors who say you're crazy let you know where they stand. They don't trick you into going back to them instead of continuing the search for someone who will believe you ... and who will at least try to help.

Invisible, but not inaudible

"It's not so much what you don't know that can hurt you, it's what you think you know that ain't so."

-- Will Rogers

September 8–14 is National Invisible Chronic Illness Awareness Week. Its aim is to help healthy people understand what it's like to live with serious "invisible" diseases such as myalgic encephalomyelitis, fibromyalgia, multiple chemical sensitivities, lyme disease, Gulf War syndrome, and many, many others.

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.

Chances are you've tried to explain what's really going on with you. But not everyone believes it: You could go back to work if you were willing to tough it out. You don't LOOK sick, so it must be all in your head ... or worse, you must be making it all up to get attention and a free disability check. So now you're not only stuck with constant pain, but you don't receive the support you'd get if you had diabetes, or multiple sclerosis, or some other "legitimate" disorder.

Want to combat this kind of prejudice? Here's something to try. Go to rescindinc.org/everybody.htm and download our song "Everybody Knows About Me." It's inspired by somebody who lived for many years with undiagnosed myalgic encephalomyelitis (also known as CFIDS, also known as "chronic fatigue syndrome"), but it could just as easily apply to many other invisible illnesses.

If you like the song, send the link to someone suffering from an invisible illness to let them know they aren't alone. Send it to someone who believes people with invisible illnesses are whining hypochondriacs. Send it to someone who doesn't quite get how it feels ... but would like to.

Everybody Knows About Me

Finding cures for these devastating diseases will cost billions. In the meantime, compassion is free.