I read an article earlier this week about things not to say to someone who’s sick. I’d like to put together my list of things not to say to someone with MS. Things like:
Have you been to a physical therapist lately? Well how do you know they can’t do anything to help you? Are you a physical therapist?
So sorry to hear you’re tired. I know how badly I feel when I’ve had a long day.
You’d be able to walk better if you just exercised more. Oh, you are exercising? Well, you ought to be doing more.
What do you mean, you can’t ride the exercise bike at the gym? You just don’t have the settings right.
I’ve heard those phrases repeatedly. For added effect, the people saying them graduated with honors from the school teaching how to communicate like Jack Bauer on 24. Repeat what you’ve said even louder so that you really, really make your point.
Mostly I hear them from family. It’s amazing the things that family members will say to each other. Things that they would never say to a friend, or to someone they walk by on the street. But since it comes from a place of love, it’s supposed to be OK.
Actually, it’s supposed to be more than OK. If it upsets me, then I’m the one who needs to understand. I just need to know the person was well-intentioned and move on. If I can’t do that, then I’m the one with the problem. I’m not allowed to cry, but they’re allowed to cry and yell at me for feeling hurt. It was all from love. We all just want you to feel better, they say. We all want to help you, but we’re so frustrated that there’s nothing we can do to help you. The person who said it to me has been under a lot of stress, so I just need to understand. She’d never hurt you.
I guess the biggest mistake I’ve made is putting on a brave face for my family. Maybe if they saw me crying more, they’d act differently. Maybe they ought to see how frustrated and scared I get when I try to do my exercises and can barely bend my knee. Maybe they ought to see that for every 10 minutes I exercise, I spend at least 20 minutes fighting off the tears and negative self talk. Maybe they need to get inside my head and hear that voice saying Why bother exercising? All anyone will say is that you’re not doing enough to get yourself better.
So tonight, I’m the bad guy. I’m the one who gets guilt tripped for saying I’ve heard enough. They can storm into my house, yell at me about how I’ve made them feel, mutter that I’m ridiculous, and storm out without letting me say anything. Why give me a chance to say anything anyway? I’m just being ridiculous.
