Lately, I've been seeing a lot of those posts/essays/articles. You know the ones; “10 Things Not to Say to Someone with a Chronic Illness” or “Sorry I Don't Fit Your Idea of Looking Sick”. That point of view has always bothered me a bit; how we (people with MS, or just people in general) expect other people to always know what to say or how to act. There could be lots of reasons people say things that upset you. Perhaps, on a different day, it wouldn't bother you at all.
Point is, everyone has days where they do or say things out of character. EVERYONE. I bet there are things you wish you hadn't said or done. Maybe not to the point of regret, but things that might make you cringe a bit when you look back.
Maybe the person who said it didn't know what else to say! I mean, think about it. When you meet someone with a chronic, incurable disease, you don't expect them to look “fine”. I'm sure 99% of the people who say things about your MS that rub you the wrong way do NOT intend to annoy you.
Maybe that person is having a bad day. Maybe that person is having job troubles, health troubles, money troubles, or just didn't get enough sleep. Maybe they need a bite to eat.
Let's dissect a hypothetical conversation:
Person one: I took my elderly neighbor to the doctor the other day. His daughter lives nearby but she can't take him. She's in a wheelchair. She has MS.
Person two: I have MS as well!
Person one: Really? But you look fine!
Okay, person one is relating something, and sort of defending why he/she took the neighbor to the doctor instead of a family member. Person one is heading off the “why do you have to take your neighbor to the doctor” question. Person two is looking for a common thread in the conversation. Person one is surprised because the only person he/she knows with MS is the neighbor's daughter who is in a wheelchair.
Person two has options at this point. Person two can choose to be offended and defensive. Person two can shrug it off. Or, person two can take this moment to tell person one a little something about MS. Even something simple like, “MS is different for everyone” is more knowledge than person one had earlier.
Maybe person one wants to know more and ask questions, maybe not. But if we just wish people knew more about MS and don't do anything to further the public's education, we're just as culpable in feeding the ignorance.
How many times have you said the wrong thing because you didn't know what to say or for whatever reason? We've all done it. Having MS doesn't make me an expert on having a conversation. I just try to realize where the comment is coming from.
Yes, sometimes it's irritating to hear how "good" you look outside when there's so much happening inside. Your legs are vibrating like a tuning fork, you have vertigo sitting in a chair, the heat makes you rage like a wild animal, you are dealing with optic neuritis, and you have a headache that no medicine can touch. My personal opinion is that if you don't take the time to enlighten someone, there's no way you can lament people's ignorance about MS.
There will always be those who don't believe anything is wrong with you. As long as those people aren't your neurologists just ignore them, the best you can. And if you do snap at someone, remember: We're all people, trying to make our way on this planet. We all have days we wish we could do over. We all have days that are better than others. Let's try to be a little gentler to ourselves and other people.
