- Diseases, Disorders & Conditions
5 Things Not to Say to Someone That Has MS
As someone with multiple sclerosis, I've discovered that one of the most interesting aspects of the disease is that it makes people around you say dumb things. This is to be expected, I suppose. Most people don't know much about the disease, and many symptoms of MS are invisible, so you can't really tell how it's affecting someone. It can be hard to say something supportive when you don't really know what's going on.
There are a few specific things, however, that people seem to be inexplicably compelled to say to people with MS, that really shouldn't be said. If I were the only one that noticed, I wouldn't bother writing this, but I've seen the topic come up repeatedly in MS forums and support groups, and these particular statements almost always seem to be mentioned. I thought perhaps it might help to bring them to the attention of a wider audience.
MS - Invisible Symptoms:
1. "You don't look sick"
This is probably the number one thing that people with MS don't want to hear, which is unfortunate, as it also seems to be the number one thing that people want to say to them.
In general, people like to be complemented on their appearance. It can come as a surprise, then, when someone doesn't want to hear that they don't look sick. The truth is that after a while, a person can simply get tired of hearing about how good they look when they consistently feel so bad.
Another sad truth is that, because many MS symptoms are invisible, people with MS are sometimes accused of exaggerating, or even faking, their symptoms. Right or wrong, someone with MS may begin to wonder if saying "you don't look sick" might actually mean "I''m not so sure you are sick".
2. "I know how you feel"
Saying "I know how you feel" is a common way of showing support and empathy for someone. Unfortunately, saying this to someone with MS may be the single best way there is of demonstrating that you really don't understand the situation.
If you're a stranger or just a casual acquaintance, it doesn't matter. Someone with MS will see that you're trying to be supportive, and will appreciate it. If you're closer than that, however, you really owe it to your friend or loved one to learn enough about MS to know better than to ever say "I know how you feel".
3. Any motivational cliché
Seriously. We know the clichés. Everyone knows them - that's why they're clichés! They're great for little pick-me-ups to help get you through the day, but they're no substitute for actual thought. If you want to be supportive, take the time to actually say something.
4. "Everything happens for a reason"
This one is double-bad. Not only is it a cliché (see item #3), but it seems to me that it's also just a really dumb thing to say.
I'll be honest. I don't know nearly enough about the nature of existence to say whether or not everything happens for a reason. Maybe it does, but if so, I have to tell you that this really doesn't make me feel better. Maybe I could meet with someone in charge to discuss exactly what some of these reasons might be?
5. "You're lucky because you don't have to work"
Again, it boggles my mind, but people actually say this. Do you really think you'd like to trade places with someone who has MS so that you can get to stay home from work? Believe me, you don't.
There aren't only physical challenges (think of your worst day ever and triple it. Now realize that you're never going to get better), there are financial ones, as well. Disability pays me about 25% of the salary I used to earn as a computer programmer-analyst. Is that an adjustment you'd feel lucky to have to make?
The strangest part is that I know the people who say this are actually trying to be supportive and encouraging. I'm just not sure exactly how they think this statement is going to do that.
I imagine that people with conditions other than MS have similar complaints about statements like this. The bottom line is simply to stop before you speak, and think about what it is you're about to say. Come to think of it, that's probably good advice in any situation.