Self-Advocacy is the new orange

Self-Advocacy is the New Orange: How Do You Raise MS Awareness?

When we mention Multiple Sclerosis, we want to see the light of knowledge and familiarity ignite in a person’s eyes. The opposite of that would be indifference, the thousand-yard stare of ignorance, apathy, fear. Thanks to social media, we are seeing more and more of that encouraging light of familiarity these days as celebrities with MS share their stories on talk shows, talk show hosts with MS endorse therapeutic treatments, and therapy gurus clamor for access to our Kindles and our checking accounts.

By now you’ve probably noticed that the lion’s share of MS awareness-mongering is about fundraising. Exactly when “awareness” became a synonym for “send more money” is hard to pin down. Certainly it is a throwback to simpler times when overly technical explanations by scientists flew over the heads of the general public, alienating them rather than fostering concern and understanding. The invention of cinema and television bridged the gap between science and the uneducated populus. Think of Carl Sagan, Neil Degrasse-Tyson and Bill Nye as prime examples of popular contemporary gap-jumpers. They don’t just inform, they inspire and entertain.

Research dollars are vital to the process of finding a cure, of course. But throwing money at the NMSS is not at all the same as, say, throwing it at St. Jude’s Children’s Hospital; at least, not for me. Of course, the obvious difference is that St. Jude’s is both a treatment facility and a research lab. To an old girl like me, organizations like NMSS, MSAA and MSF seem like virtual abstractions, not real brick and mortar institutions like St. Jude’s. I donate to St. Jude’s almost blindly, although I do also read Marlo Thomas’s well-written and impassioned letter that arrives with the complimentary address stickers. I’m a Baby Boomer, and characteristic of my generation, I know it like the back of my hand that Marlo and her dad Danny and St. Jude’s have always been about saving children that have cancer. There wasn’t a time when I didn’t know that, as though I was born with the knowledge. So I give. I cannot bear looking at a four-year-old with a bald head and a face swollen from steroids. Who can? The thing is, the campaign features sick kids, brand familiarity, multi-generational familiarity, a decades-long celebrity family endorsement commitment, funding integrity, and one famous address to which we send that check. Like instinctively writing a letter to Santa addressed to the North Pole. Or watching a Jerry Lewis telethon for Muscular Dystrophy and dialing that same 800 number that flashes on the TV screen year after year. Jerry always broadcast from Vegas and always on the weekend before Labor Day; we could count on it, anticipate it, like we could Thanksgiving and Christmas.  And he’d get our money one way or another. We knew that, too. All he had to do was schedule Sinatra and Sammy Davis, Jr. to sing during the later hours. If we delayed the evening meal until then, we’d get dinner and a floor show right there in our living room, monetary contribution optional. Those were the days.

Granted, the business of raising disease awareness today isn’t the model it was back in the day. No March of Dimes movie theater newsreels of kids doing the Frankenstein walk in leg braces or reclining helplessly inside an iron lung, playing on the well-justified paranoia of parents terrified that their kids will catch the polio virus; no Labor Day entertainment extravaganza to lure the masses on network television with a few poignant shots of fragile little boys suffering with Duchenne Muscular Dystrophy, kibitzing with Jerry Lewis in the peanut gallery (again, sick kids). Multiple Sclerosis is rare, it mostly hits adults, you can’t catch it, and often—here’s the real kicker—you can’t even see it. If I stood in front of a television camera and appealed to the public for MS donations, I might come off looking like Elwood P. Dowd soliciting handouts for his invisible 6-foot-tall rabbit buddy, Harvey. This might be why Montel Williams isn’t hosting a Labor Day MS telethon from Caesar’s Palace. He looks normal, the audience has to take his word for it that he isn’t, and he can’t perform a medley of old Broadway show tunes with Frank and Dean. The cute-poignant-tragic factor is absent, too: no kids in wheelchairs. And even if it were broadcast on network television, cable competition would be so fierce that it would capture a very small market share, much smaller than it would have in pre-cable days.

Relying on celebrity voices to go to bat for us is a thing of the past. Celebrity itself has lost its credibility in this cynical, post-Watergate world, where authority is under constant scrutiny. In part, we are left to rely on the cred of the medical establishment and on reputable research organizations. But we must do the vetting ourselves.

Twenty-first century disease awareness begins with taking stock of our own awareness. We should regularly assess how we live in the world, how knowledgeable we are about where to find help if we need it, and how we use social media to stay in the world and grow our knowledge base.

Here are some things we can do during the month of March to refresh and stretch our personal concepts of MS advocacy:

  • If you are a member of several private and public online health forums, take note of those members who haven’t been heard from lately and reach out to them. An email, IM or phone call will strengthen the connection, making you worry less and your friend feel less isolated. You might be able to help your friend by doing some online research about a problem they are having, or by encouraging them to see their neurologist.
  • Say yes to things you’ve been saying no to for the past year. It’s so easy to get in a rut, telling yourself what you are not able to do. Saying yes to a shopping trip, a lunch out with friends, or traveling to a seminar sponsored by a Multiple Sclerosis organization will show you what you are able to do now. Things can change for the better in as little as a year, even if it is a change in attitude, a change of heart, or a change in mood. Breaking our well-worn patterns can be a refreshing change of pace and knock us out of our funk. Since it’s a one-day only kind of thing, you don’t have to commit to anything long-term. Then…
  • … Share what you did and what you learned on Facebook/Twitter. Post it for friends and family to read so they can better understand what MS does to your life and how you are coping with it now. Your favorite MS support groups would like to know about it, too.
  • Participate in MS-related surveys and research projects. Our participation will infuse clinical trials and future treatment techniques with patients’ concerns and priorities.
  • Post studies on your Fb page/blog/Twitter that hold significance for you and write about why you find it worth noting. Your followers are paying attention to what you post even if they don’t respond to it. Over time, they’ll become accustomed to hearing/seeing certain MS terms and catch-phrases. This will demystify the subject of MS, keep it out of the closet and in full view.

In other words, make a big noise. Have a big mouth. Get pushy. In constructive ways, of course. Not only to raise other people’s awareness, but to hear yourself say it, read your words on a screen, and discover anew that your information stores are expanding and your self-confidence is puffing up.

If we all make a habit of blabbing and texting, blogging and posting about MS, and we do it right along with our recipes, cute puppy photos and grumpy cat tableaux, it will demystify the disease for the mainstream. If we complete every survey that invites our participation, we are making our needs stand out all the more in the research community. That may require having one foot in the mainstream and the other in the research community while straddling a disposable catheter. It’s what we do. We are the many, the humbled, the PwMS.

Oh, and one more idea. If anybody knows a good gag writer, we could use an MS joke book. I mean a really, really good one. Preferably one that would stay at number one on the New York Times non-fiction best seller list forever. I’m trying to channel Robin Williams, but so far he’s been uncharacteristically silent. Mel Brooks is too old and Larry David is too grouchy. I like Tig Notaro but she doesn’t return my calls. Love Amy Schumer but she’s too blue.

In the spirit of self-advocacy, independence and taking the initiative, I suppose I’d be willing to sleep with Jon Stewart in exchange for one session with his “The Daily Show” writers. Saying yes to every opportunity this month is going to take me to some woolly places. Am I game? You betcha!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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