Thursday, June 12, 2014
Onward Through the Fog: Time to Deliver Report: How Surveys on CFS Fail
roughly 700 people said they were mildly ill, yet fewer than 200 people were still working normal hours. That means that the majority of mildly ill patients had stopped working. If an illness is serious enough to prevent a person from working or attending school, it cannot, by definition, be mild.
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People who have been living with major restrictions tend to be less realistic about how severely restricted they are -- "I can't be severe, I can still get up to feed the cats (even though it knocks me out the rest of the day)". We tend to limit "severe" to those who can't get up at all, not even for a minute.
When I applied for the sleeping pill clinical trial, I circled "moderate", since I was sleeping a few hours here and there. To me, "severe insomnia" meant I never slept at all. When the doctor reviewed my sleep diaries, he upgraded me to severe.
So, there's a disconnect between patient perception and doctor perception, and quantifying is perhaps the best way to resolve that disconnect. On one appointment, I had a doctor scold me that I needed to go out for a walk, and that walking around the house was not enough. By my next appointment, I had had a chance to pull out the calculator. Because I live in a long, narrow house, just the bare minimum of going to the front door to bring in the paper in the morning and the mail in the afternoon, and three trips to the kitchen, added up to 1/4 mile, even on days that I wasn't well enough to be out of bed for anything more than that. When I told him at that next appointment that I walked a minimum of 1/4 mile every day, and sometimes more (if I'm well enough to sit on the couch instead of in the bedroom, those trips to the bathroom at the other end of the house add up), suddenly that was OK. The amount of walking I was doing hadn't changed, just his perception of it.
So now I've learned to give them numbers instead of adjectives. "I get light-headed if I sit up for more than 5 minutes" gets a lot more attention than "I have to spend all day lying down."