March 29, 2022
5th week, MS Awareness Month
I let my hair down last night. I posted a distressing message on social media.about MS Awareness Month.
I have just reached my 42nd year of living with MS, and I was in one of my distressing moods.
Throughout MS Awareness month, I guess I was irritated by the upbeat MS events, activities and stories I’ve been reading all month on numerous publications and MS platforms. I was tired of all the happy posts on social media, and wanted to express my real feelings at that time. It seems the same every year.
I get it that people with MS need lifted and this is an appropriate time to do just that. But why does it stop there?
Truth is, people need EDUCATED more about MS. It sucks. It’s hard. And I’m tired of. pretentious posts by people who glorify that that “MS” doesn’t define them. MSers are shown doing all kinds of wonderful things. “There are SO many treatments available now. Just pop a pill or get a shot.” Inspiring, yet defeating. Are we shooting ourselves in the foot?
I want honestly. Realism. Why aren’t there more innovative ways to help people UNDERSTAND the complications and implications of MS. Display faces of distress and sadness instead of smiling ones. Why not show a list of things that cause financial impact–job loss; medications; bladder supplies; equipment… Or of our losses–income. freedom, independence, social life, household limitations…
I was gratified that some online websites offered great MS education in March. MS Wellness Project has an excellent post about resources. The Rocky Mountain MS Center has a free newsletter entitled “Painting the Picture of MS: How can we help the People Around Us Better Understand Multiple Sclerosis?”
There are one million people estimated in the U.S. (2.5 million worldwide) living with MS. However, when you count the people not living with it–friends, family, healthcare workers, employers, public service, strangers, etc.– the number dealing with MS is in the millions! Helping everyone to understand MS helps those of us living with it.
Today is another day. It’s education time, one of my passions in life. If everyone dealing with MS educates just one stranger with MS, it’s an impact. There are strength in numbers.
Although MS Awareness Month is over, educating others about MS doesn’t have to be,
What do you think?