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?
Debbie Petrina
Author of Managing MS
Community Advocate for MultipleSclerosis.net
www.DebbieMS.com
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You are spot on, Debbie. Whenever the media gets involved, they show the “glory” side, the happy, life is beautiful side of MS (or any other disease). I don’t deny their intent, but as said here, that is not the reality of the MS life. It is more complicated than just getting a “magic” shot or pill – those things are only meant to help but they don’t fix it. I have a hard time with the reality of this crap sometimes because “you look so good” when in reality, the MS life is not good. It’s like this little storm that never stops, sometimes it’s quiet, sometimes it roars, but it is always there – just waiting to explode and screw up our day. Maybe we need to share more of the anger and sadness about MS to offset all those that show how perfect that pill/shot makes things.
Thank you for this! I agree! We all would like to be the people who “have MS, but it doesn’t have me,” but there is also reality.
I just started Ocrevus, which has frequent commercials. People who know my journey of switching treatments (again), and then have seen the commercial think I’m going to be “okay” now. To those not in our circle, the idea of having a treatment available seems to equate to having a cure.