This column article written January, 2001.
I’m worn out now.
I just attempted to explain to yet another person that no, Chronic Fatigue Syndrome does not just make you sleep all the time.
Narcolepsy is a disease that makes you fall asleep all the time, even in inappropriate places like at the dinner table. I know this because it runs in my family. However, CFS is not Narcolepsy. CFS makes you exhausted all the time, and it makes you hurt all the time, and it does a lot of other nasty things, but it doesn’t make you sleep all the time. Quite often it actually stops you sleeping, although you’re exhausted beyond belief.
Explaining Chronic Fatigue Syndrome is difficult because the name appears to explain the condition but is actually more misleading that explanatory.
Another difficulty experienced by people with invisible diseases is conditions that are simply complicated to explain. Usually things are hard to explain because of their range of symptoms – I rarely even try to get people to understand about Ehlers-Danlos Syndrome or Reflex Sympathetic Dystrophy or any of the more esoteric things wrong with me. It’s rarely worth the effort.
I feel like I “should” really be patient and kind and explain to endless numbers of people so that they will know more about it next time they meet somebody with the same disease, but it takes so much emotional and mental ENERGY and I don’t have much.
Is it okay to get sick and tired of explaining to people about my diseases, though?
Somebody suggested that I should make it into a macro or a form letter or something. Actually, I did that a few years ago (it’s here), but it doesn’t always seem appropriate to bring it up in conversation.
Somebody once suggested to me that I get small business cards printed out with the most significant symptoms one one side, and on the other side put major activities that I am handicapped in, for example “Unable to stand for more than 5 minutes”. I like the idea of having something that looks vaguely official to hand out, but I never pursued the idea seriously.
Sometimes if somebody seems to be “just asking” for the sake of politeness I try to fob them off with, “You probably don’t really want to know about that”, or, “It’s complicated…” or something like that. If somebody keeps asking after that they probably really did want to know and that helps with the explaining.
On occasions, if I’m not up to explaining, I tell people to ask questions instead. It can be easier to answer things than to try to remember all the right bits to tell people! And you might miss important parts when you only follow the questions, but at least you get a chance to correct some misconceptions.
I do at least try to be polite to people who want to understand. They’re streets ahead of the general public who accept the trivial/unimportant messages without question. If I really can’t explain I try to go back later and explain. At least most people try.
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