I have heard that some people think that MS is contagious like a virus. This ignorant thought can cause people to avoid us. Others believe that we have mental problems making them ignore us. Some have thought multiple sclerosis is more than just an illness. This lack of knowledge may encourage them to shun us.
People can quickly put their foot in their mouths when interacting with people with disabilities. This action is because they think that they know but they have no idea. This bad behavior is noticed if medical issues are visible like using a cane, walker, or wheelchair. The humor comes in when they pretend that they know. I heard it once said, “It is better to keep your mouth shut and appear stupid then open it and remove all doubt.”
The other day I woke up on a swim day and something felt a little off. I had a challenging start to the day, but I was not about to give in. I was moving slower with a hint of weakness in my arms. Thankfully I always plan for an extra thirty minutes or more for unexpected MS and life issues.
COTA made me over an hour later to the pool than usual. At this point, I was late, starving and flustered. After this frustrating morning I finally was ready to get into the pool. I pulled up next to the chairlift and should have paid attention to the warning signs. As I transferred to the chairlift, I landed very close to the edge in a precarious state. Within a microsecond CRASH and down I went hitting the concrete floor. I did not say anything, but I hurt my hip and my hand a little. Sadly I hurt my pride much more that morning.
I have been a member at that pool for well over a year. In that time I have never dealt with a debacle like that. I say all that to say this: there was an older woman in the pool and her first words were “you should get a caregiver.” I had spoken with her several times before so I had to remind her of my situation. I let her know that I live alone and one hundred percent take care of myself. I explained that this was the first time that I have ever had this happen at the pool. I told her not to worry if I show no fear.
When a friend found out that I was diagnosed with MS, they asked me “how long?” “How long what?” I asked. “How long have you been given to live?” they clarified. I had to explain that multiple sclerosis is not a death sentence. I told them that I have the same life expectancy as everyone else. “I will live longer than some people and not as long as others.” I explained
When I was planning to move someone said to me “you should move into an assisted living facility.” “Why” I questioned. “because of…you know…your MS” they said sheepishly. I reiterated that I live alone now with no problems. I reminded them that people live with this condition both alone and with families all of the time.
Right after my diagnosis, I was assisting someone with their kitchen remodel. My friend had a buddy visiting. This guy kept staring at me all day like he thought that I would go into a seizure or something. He never said anything to me but stared hard at me his entire visit.
A friend who also has MS was shopping and was using a walker. A little girl saw her and asked her mom “what is wrong with that lady?” Her mom grabbed her and said, “Be quiet.” My friend went up to the little girl and nicely explained so that a little kid could understand. At that point, my friend looked at the mom and said “I would prefer to be asked then avoided.
Just the other day I was explaining an MS issue to a woman, and she was surprised by the facts. She was surprised and told me that she did not know. This woman knew what she did not know and was not afraid to admit it — what a concept. “You learn something new every day,” I said.
I think that people act the way that they do around the disabled because they do not know what to say or do. I understand that feeling to a point. What I mean is that you may not know what to say but just talk to us. We are like anyone else when you speak to us we will return the conversation.
We do not fear the unknown. We fear what we think we know about the unknown.