Cracks in the facade of a modern hospital building.


Seven things I’ve learned from chronic, undiagnosed illness

During the years I was figuring out the celiac-nutritional deficiencies-liver damage thang, I had a few revelations that probably otherwise wouldn’t have been visited unto me until later in life. Several of these were a result of aphasia episodes, wherein my speech became slow and halting and would occasionally just stop mid-sentence.

1. People listen to the pattern of your voice before they listen to what you say.

When the aforementioned speech weirdness caused me to break off in mid-sentence, coworkers and friends would laugh as if I’d said something funny, even though I hadn’t and even though I clearly had not finished my sentence. Maybe they just thought I was making a half-assed attempt at comic timing. Several years later I discovered with a certain acquaintance that when I, like, ended my statements on a questioning “up” note?, she was pleasant and cheerful, but when I used a more professional speaking voice, with confident final notes, she would invariably contradict me.

2. Nice friends are not always good friends.

For some people, “nice” means “let’s avoid all unpleasantness, shall we?” Others confuse their passivity with niceness. They won’t be the ones to tell you that you can’t seem to follow conversations anymore, or that you’re starting to smell weird.

3. Long-term insomnia is inconceivable to most people.

Even when they want to believe you, they can’t. Both civilians and GPs will assume you’re misestimating the time you’re awake or that you’re doing something wrong. (Sleep experts are a lot better about this than they used to be, although their tools are still pretty useless.)

4. A huge section of American culture does not work as advertised and cannot be relied on to solve long-term problems.

If nothing else, knowing how useless our healthcare system is mentally prepared me for when all those other big institutions broke. Or were revealed to be broken.

5. People like you more when you ask them questions.

For introverts, asking questions about things that don’t genuinely interest them feels fake and forced, but extroverts understand that it’s all about demonstrating interest in the other person’s interest in the subject. You don’t have to give a hoot about the topic itself. The strategy has another advantage, as a well-liked coworker of mine pointed out: “When someone gets really boring I just ask them a question.”

6. Much of what you say is to reinforce an image you have of yourself.

Another aphasia revelation, best expressed by a woman who wrote an account of her month-long vow of silence, which I have to paraphrase because I can’t find her article now. She discovered that almost all of what she would have said was not about sharing information or an experience, but creating a picture of herself for the person she was talking to. I did find another person’s vow-of-silence story here.

7. Not working because you feel like shit is inconceivable and even morally wrong to a lot of people.

As long as you can still walk and remember your multiplication tables, you are expected to continue working, even if 80 percent of your energy goes into getting dressed in the morning. Presumably you are expected to wait until retirement to figure out your health problems. I guess a lot of this is due to fear and denial, since few people can afford not to work. No one wants to imagine that it could happen to them.

Another reason is profound ignorance about the limits of what medicine can actually accomplish, leading to assumptions such as:

  • any prescription drug is better than no drug
  • there’s a prescription drug for every malady that exists in the world
  • if you refuse to use prescription drugs then your illness is your own fault
  • if doctors can’t find anything amiss with a person who continues to insist that something is wrong, said person has mental issues.

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