Last updated: December 2021
We all know "the look". It is the one with the big puppy eyes. It is the slight downward turn of the mouth. It is the look of pity. It is the look that we get when we tell people we have multiple sclerosis. The look that I am talking about I refer to as the "Jerry’s Kids" look. For those of us old enough to remember the Labor Day telethons, we know the look. It was the one that was elicited when children with muscular dystrophy were brought out to meet Jerry Lewis. The way he talked about and viewed people with muscular dystrophy was challenged such as this interview with Chris Wallace.
The burden of pity
It was from a time when those with devastating illnesses were looked upon with extreme pity and trotted out for sympathetic viewing. It was the look bestowed upon the ill from those in perfect health. We were seen as deficient with lives not quite worth living.
I hated those telethons and I hate "the look". I may be chronically ill, but my life is not pitiful and it is worth living to the fullest.
Media portrayal of MS
When you do not have a chronic illness like multiple sclerosis, being ill looks awful. What is shown in the media is nearly always negative. We are depicted as people who ARE our disease and not as regular people doing regular things. A multiple sclerosis diagnosis is a sign of certain death. Writers who lack knowledge use MS as a cheap prop. People with MS are to be pitied. There are exceptions.
The television show The West Wing. President Josiah “Jed” Bartlet. The handling of his relapsing-remitting multiple sclerosis was applauded by many including the then president of the National Multiple Sclerosis Society.1 That characterization showed the complexity of multiple sclerosis. It included a bout with a wheelchair and a resulting left leg impairment.
This is not par for the course and The West Wing ended in 2006.
The reactions to disclosure
I used to be careful to whom I disclosed my multiple sclerosis diagnosis. It was not from shame or fear. It was often because I hated getting that look that said they thought my life was over. It was the way in which sadness and dismay were communicated. They were always sorry. It was not the sorry I got when I broke my ankle. That kind of sorry was a run-of-the-mill type of comment. This multiple sclerosis sorry carried with it a tinge of dejection. Like they already knew what my life was like and how it would end. I did not want to get the look of pity.
See me and not my illness
I wanted to shout out loud that my life is fulfilling! Multiple sclerosis is a part of my life. It is not my whole life. It is not me. It is a chronic illness that is along for the ride. I have a couple of close friends and an ultra-small family. I have advocacy work that fills my time and my soul. My life is in no way to be pitied or seen as less than. My life is more than “the look”.
Nowadays when I am mentioning that I have multiple sclerosis I head off “the look”. I have instinctively begun to follow up my disclosure with words that tell the other person that I am just fine. I want them to see me and not my illness. I let them know that they do not need to give me “the look” and to not feel pity. I want them to know that I am living with multiple sclerosis and not the other way around.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: