Wednesday, March 19 2014
You probably already lie about your illness. To wit: “How are you?”
Sound familiar? Don’t feel bad about it. We all do it, to some degree or another. Sure — you may be radically open about your illness and symptoms, and that’s great — but I’ll bet that sometimes, for some people, you give them less than 100% of the truth.
The trick to lying about illness is perspective. Remember Obi-Wan Kenobi from Star Wars? After he got caught lying to Luke Skywalker — that Darth Vader killed his father — Obi-Wan defended himself by saying it was true “from a certain point of view.” Same thing for illness. Telling an honest lie about your illness simply depends on appropriate perspective.
“How are you?”
I hate this question with the fiery hate of a thousand bursting suns. The answer is never, ever going to be ‘fine’. So to avoid all that, I’ve come up with an answer: “Well, I’m not dead yet.” Which is true, actually. It’s not at all a lie. The lie is that I say it with a mischievous grin on my face, like it’s hilariously hyperbolic, which it hardly ever is. The fact that I am not dead yet is hugely important in my life, and I am lying by pretending it’s a joke. It totally works.
“What’s that there?”
When you have to take medicine in public — e.g. with meals — people are sometimes too curious for comfort. So the pills and powders I take end up being “vitamins” or “supplements”. Technically, that’s a lie, but I don’t really know how vitamins and supplements actually work, so in theory my medicines could be sort of the same thing. Right? I mean, who’s to say that prednisone or Remicade could not also be called supplements? Well, sure, the FDA — but now we’re getting technical.
“What’s it for?”
This is occasionally the follow-up to the pills questions; if you want to be a jerk, you can say something goofy like “penile hyperplasia”, but I usually say something generic like “reflux”. The trick to this lie is to find something sufficiently close to your actual symptoms, that people will assume that they know what’s wrong with you. You want to land them in the general neighborhood of your actual problem, without being specific enough to lead to more questions. It’s not so much a flat-out lie, as just enough truth to be satisfying, but not enough to be helpful. This directly leads into the next lie, and it’s kind of a big one.
“What’s wrong with you?”
As far as people who ask nosy questions should be concerned, there are only two kinds of illness: “allergies” and “cancer”. Again, you may wish to be more open with your illness, but these two are all you really need (apart from clinical contexts, obviously).
If you have an autoimmune disease, you’re basically allergic to yourself. Granted, that may not be strictly true from a medical perspective, but it is true enough from a non-technical perspective. The reason I don’t drink is because I’m “allergic” to alcohol — at least as far most people know — not because I have IBD that ruined my small bowel and colon and alcohol gives me massive diarrhea. See how much happier everyone is with “allergies”?
And if “allergies” aren’t enough, there’s always “cancer”. I poop into an appliance because I lost my rectum to IBD. When a less-than-close friend asks me about the appliance, I’ll tell them it was “cancer”. Why? First, I was in fact diagnosed with cancer (wrongly, it turned out) in the process that lead to my surgery.
Second, there are in fact a ton of similarities between my disease and cancer, even if the clinical details are somewhat different. The difference between IBD and colon cancer is way smaller than the difference between brain cancer and colon cancer, in practical terms. In fact, nearly every part of the body has a conveniently lie-able cancer. Again, “cancer” is just enough truth to be satisfying, but not enough to be helpful.
What makes “cancer” a really useful lie is that most people assume they know what it means. We have movies and TV shows and comedy tapes about cancer: it has a well-established story line. People don’t feel the need to ask after “cancer”, because they feel they already get it.
By contrast, one of the things I have learned about IBD is that most people don’t understand it. I can explain at length, and it still doesn’t make sense to them. So they assume it’s fake, or that I am exaggerating, or that it’s mental somehow. And they treat me like a weirdo. That really, really sucks.
But say “cancer”, and suddenly I’m one of those yellow-bracelet hero types, and they are suddenly decent human beings. “Cancer” ends up being a shorthand for a kind of ‘just deserts‘ mental calculus, in which they feel obliged to grant me a standard dose of compassion. They feel like they understand, and I feel like they care, and everybody is reasonably content.
Which is to say, I am doing them a huge favor by lying to them, because the actual literal truth would lead them to behave like ignorant jerks. Nobody wants to be an ignorant jerk, right? Using “cancer” gets them to the right place — where they should be on the map of human decency — albeit by an arguably shady shortcut. Whatever, right? If I had the energy for the long way around, I wouldn’t be sick enough for it to matter.
So: you’re going to lie about your illness, somehow or sometimes. The trick is to do it deliberately and purposefully, rather than casually and pathologically. Feed the nosy ones enough truth to feel full, but not so much that they vomit. Instead of outright lies, you’ll find a lot of easy half-truths about your illness, if you allow yourself that ‘certain point of view’.