Home Forums Chronic Dysphagia How little other people understand what we go through Reply To: How little other people understand what we go through

Rip Van Winkle

Hello, Elizabeth,

So sorry about your friend. While there are lots of things to do that don’t directly involve eating, as so many people never tire of telling me as if it would assuage my unhappiness, it is the indirect effect of chronic dysphagia that is so very trying. Snacks, having a nice cold drink, seeing those luscious pizza commercials with the dripping cheese and dipping sauces, watching movies with the meal scenes, attending dinner parties, and all day outings without a place to use one’s tube. Then there are the insidious side-effects—in my case, loss of the sense of taste and vastly diminished saliva production which results in not being able to exercise vigorously.

But I do watch movies at home—hurray for cable TV—I read a lot, and I take half day trips to museums or to play golf. Of course, it’s when it comes time to have a bite at the museum cafe or join my golf friends in the grill room for lunch that the CD is particularly odious. The loss of social interactions in those instances just adds to the depression one feels with CD. So I abide.

The best you can do for your friend is be positive, but never downplay his condition in an effort to make it less onerous. CD is undoubtedly the worst infirmity I can imagine. I met a guy who was a quadriplegic and had CD, and he said the CD was infinitely worse than his loss of mobility. In short, no amount of lip stick will make this pig pretty.