I once thought there was no pain or very little pain associated with Multiple Sclerosis. I have to admit that I was wrong. There is a lot of pain. I can’t give anyone a specific number of nights where I lay writhing in pain trying to sleep. I get up eventually and write a piece of music or do some artwork. These things often take me from inside myself to outside myself. Oftentimes I can be found slumped over asleep, at long last.
What I really like to address tonight is what not to say to someone who is chronically ill. If you can’t think of anything to say, say nothing. You’re much safer that way and you won’t hurt anyone’s feelings.
- “But you look so well!”I hate this comment. I hear it again and again. Okay, it’s true that I take special measures to look good but if you’re my friend or a family member, you should know by now that MS’s personification has many faces. Add to that the effort of all MSers to put on their special going out masks, well yes; we appreciate the kind comments but we also would appreciate a knowing look or smile that indicates an understanding of what we are doing.
- “But I just saw you and you were walking really well!” Here is another comment that disturbs me. It’s as though people just ignore their knowledge of MS and it’s repercussions to everyday life. Maybe they truly don’t know? Here again, if you don’t know, say nothing.
- She/He doesn’t look like they need that scooter/wheelchair!” How do you know? Do you know that person? Do you know what they are suffering from? Is it an autoimmune disorder that is often indiscernible especially at the beginning?
- “Why is that person parking there? They don’t look like they need a handicap permit! How do you know? There are many diseases where it is not obvious what is wrong with them. Until you know that person or at least know what disease they have, you can’t judge them. I learned this the hard way and I should have known better. I was sick and tired of trying to find a parking place near the front door of an establishment when I went out shopping. I finally found a place. When I got out of the car, I saw someone walking approach their car, which happened to be in a disability parking spot. I was still frustrated. I approached the woman and asked her what business she had doing parking in the spot using a portable disability card. She looked at me with anger in her eyes and then I saw it shift to being tired, as though she had been through this many times. She explained to me that she had Multiple Sclerosis and that although her disease was not yet evident to the untrained eye they were still there. I apologized and looked away and felt like crawling all the way to the store.
- “If that person lost weight, they wouldn’t need that wheelchair!” Any person who is overweight will feel a bit better for having done so. It doesn’t take away their disease.
- “Wow! Did you see that lady/man? They should go home and sleep it off because they are bouncing off the walls! I had that said to me once. I burst into tears and explained to the man about MS. He apologized and walked me home.
The list goes on.
For those of you who mistakenly make glib comments, be careful and kind. Say nothing if you can’t say anything nice about anyone. For those of you who feel that being disabled privileges you to finding no fault in the comments you make; you are extremely wrong.