Wednesday, April 15, 2009

Insensitive Comments

I think most people with 'Invisible' disabilities, especially if they are young, are subjected to insensitive comments. 96% of disabilities are 'Invisible' and there are loads of people with no understanding of a condition who take it upon themselves to either trivialise it or tell them how to cure it.

This page on deals with that issue, and I thought it sufficiently helpful to repost it here.

It's a sad reality that having fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) means sometimes having to deal with insensitive comments made by people who, A) don't understand what these illnesses are like, or B) don't believe that they're really illnesses. These comments can put us in an uncomfortable position, and I've found that it pays to think ahead of time about how I'll respond.

When they just don't understand: For people with ME/CFS, the standard one is something like, "I get tired, too." We also hear things like, "My knees have been really achy lately - maybe I have fibromyalgia." These comments are aggravating, but they're generally from well-meaning people who are trying to show that they can relate to us (even though they're showing how much they don't.) Personally, I don't feel like I need to respond to these comments. If someone made them repeatedly, though, I might respond with a lighthearted comment like, "I don't 'get tired,' I never feel awake," or, "Wow, I wish only one part of my body hurt."

When they don't believe we're sick: It's especially rough when these come from doctors and other health-care workers. I know people who've been told, "That's just what they tell you when they don't know what's wrong," or far worse. I haven't encountered doctors like this personally (I know, I've been incredibly lucky!), but I have a response prepared: "You don't pay much attention to research, do you?" Then I'd leave and find a different doctor. If they were part of a clinic or hospital, I'd send a complaint letter to the administrator.

When it's a non-medical person, we each have to decide for ourselves whether it's better to respond or not. It's normal to get defensive and fight back, but that could lead to an even more stressful confrontation. If you feel like you need to say something, be prepared to put the offender in the hot seat. Jennifer Heisler RN,'s Guide to Surgery suggests simply saying, "I'm sure you have no idea how insensitive that comment was." You could also say, "You're lucky you don't know just how real this is." One of my favorites is, "Do you believe in MS and Alzheimer's?" When they looked shocked and say, "Of course," then you say, "A few decades ago, nobody believed in them, either." Once you've given your response, walk away. That will show how offended you are, and it also will allow you to get out of there before you become emotional or get tripped up by brain fog.

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