Wednesday, February 08, 2006

Are you Ready for Your Close-up?

You Oughta Be in Pictures

Go to to read about Michael Moore's (Fahrenheit 9/11, Bowling for Columbine) next project. He is planning a major expose of the healthcare industry, and he is looking for people to send him "horror" stories of their experiences that he might feature in the movie.

At the moment, I'm not planning on sending Moore any stories, because I think my complaints about the treatment I've received go way beyond the issue of HMOs vs. nationalized health care vs. private insurance, the good or evil that flows from each.

Inadequate Training and Imagination

My problems with the medical treatment I receive stem from the fact that doctor's are not trained in how to deal with and serve patients who have chronic disabilities that they cannot cure. I have a very visible genetic skin disorder for which there are only cosmetic treatments. Unfortunately, the cosmetic treatments make practical functioning worse -- my skin might look a little better (though hardly "normal"), but it becomes so sensitive that I can be injured by the slightest bump or abrasion.

Even today, my current dermatologist's kneejerk response to my discomfort is hydrotherapy -- even though I have learned and explained to him that 1) because my skin doesn't dry out easily from getting wet, water exacerbates odor, and makes me more prone to infections; 2) water makes me "mushy"; 3) removing callouses from my feet actually makes me more prone to blistering.

My disability's diagnosis is epidermolytic hyperkeratosis (EHK). A couple of years ago, a close friend of mine happened to meet a doctor in Ireland who was in charge of a clinic which provides services to people with EHK and similar "ichthyotic" skin conditions. This doctor coordinates a total healthcare services plan for these clients, which includes appropriate mobility assistance, pain control, infection control, and even dentistry with sensitivity to the fact that the skin around the mouth cracks easily when you "open wide".

My friend commented that she had a good friend (me) in the US with EHK, and that I was not particularly happy with the care I'd received. The Irish doctor said that his impression was that while US research in genetic skin disorders was good, the clinical services were not.

When my friend told me this story, I had two immediate reactions. One was -- how do I move to Ireland? Secondarily, I felt extremely vindicated that a doctor from another country, whom I'd never met, had come to the same conclusions I had.


I think that the inadequacies of my medical treatment are experienced by many people with chronic, currently incurable disabilities. I also think that this occurs for the same reasons as I have experienced them -- doctors are trained to focus on making people as close to "normal" as possible, often to the detriment of comfort or function.

Doctors need to learn to partner with the patient who has a long-term disability, and to discuss each patient's priorities, such as appearance vs. functionality. This is a training and attitudinal issue, not a "healthcare system" issue.

Division of Labor

Michael Moore can take on the Healthcare System. I am going to keep tackling the Attitude Issue.

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