March is half over and MS Awareness month is in full swing. We’ve come a long way in helping people understand the difference between multiple sclerosis (MS) and the disease known for “Jerry’s Kids.” I have to admit, I even made that mistake when I was first diagnosed.
Lying there in the hospital bed, feeling vulnerable in the one-size-fits-nobody cotton gown, I listened as my doctor broke the news in his most apologetic tone.
“I can’t say for sure, but it’s possible you have multiple sclerosis,” he stammered.
“You mean like that disease with the telethon?” I asked.
“No, you’re confusing MS with muscular dystrophy,” he corrected me. But that was all I got. No literature or other helpful information that might explain it further.
So here I am, fifteen years later, reflecting on what has changed. Granted, it seems less folks are making that mistake, but we’re a far cry from the level of “awareness” needed to make MS a household word. Wouldn’t it be nice to see medical breakthroughs in MS as part of your typical nightly news program?
Maybe all MS needs is a good PR campaign. That’s where we who are living with it come in, sharing the importance of our cause and getting folks to pay attention.
But how do we go about affecting this change? How can you and I raise awareness so that the words “multiple sclerosis” roll easily off the tongues of healthy people? It takes communication on every level and that should start at home.
Don’t be overwhelmed thinking you have to have a grand plan or platform, or that your voice doesn’t matter. Every voice matters! And I’ve got a simple plan for spreading MS Awareness:
- Learn: You can’t explain MS to someone else until you are comfortable that you, yourself know what it is. So learn all you can.
- Simplify: If you’re trying to explain how MS affects you, do it with analogies. I always compare my nervous system to an old lamp and MS has caused its cord to fray. My brain flickers just like the light when the signals can’t get through. Depending on where it’s frayed, my symptoms will vary.
- Express yourself: Don’t think you have to be a writer, speaker, or artist to share what you know about MS. Use your own unique talents. If you like to bake, make cookies with “MS” written in frosting for a conversation starter. Maybe you’re into woodworking, so make a wallhanging or mailbox with an MS theme. Like to sew or make jewelry? Design your own MS emblems and add them to your ensemble in order to spark interest. Everyone has some gift to give to the MS awareness campaign.
- Get Social: The internet is a tool of empowerment. Share awareness graphics with your friends on Facebook. Tweet links to Awareness fundraisers and events on Twitter. Create a video to help the newly diagnosed understand it’s not the end of the world. Remember to use hashtag #MSAwareness when posting on social media.
- Reach out: Mother Teresa knew what she was talking about when she said “Never worry about numbers. Help one person at a time and always start with the person nearest you.” That’s the best advice I ever heard, after all, she made a difference, right? Start with family and friends and before you know it, you are telling the produce manager at the grocery store all about MS.
Think of awareness as sunshine. Every time we spread our MS message, sharing the need for research and funding, we shine a little more light on our cause–and our future looks that much brighter.
“Hope for a Cure” illustration by Jeri Burtchell