Multiple Sclerosis in the 21st Century. Use Social Media to Raise Constant Awareness - Manifesto -

In recent years, with the rise of the new media and then getting more and more social, there have appeared new ways of contributing to the awareness effort. People’s attention is focused on these little screens we call smartphones and tablets. Their attention span became smaller, time has even become a commodity and all the awareness efforts should be made wherever people spend most of their time: on social media.

In today’s article, I’m going to focus on three creative ways (plus a hybrid one) in which you can use the new media. These can make such a big difference in letting the world know about multiple sclerosis.

SOCIAL CONTEXT

All over the world there are many societies, organizations, NGOs and medical institutions who dedicate their entire efforts and expertise to raising awareness and trying to find a cure for multiple sclerosis. There are also huge efforts being made in order to communicate MS to the general public, but mostly in advertising or social campaigns, in changing and creating policies inside the governments and so on.

Being a part of the online MS community myself and having closely observed it for the past two years or so, I can now say that we aren’t using social media to its true potential. Although we have quite an online presence, most of the MS-related communities, pages, etc. are targeted back to MSers, their families and friends, to medical research or political entities.

Given the fact that we are young people with ages between 20 and 40, we are tech-savvy, so we need to do the best we can in order to raise awareness. Constantly, not just on MS Awareness Month or International MS Day. These campaigns bring huge amounts of attention to our cause, but only on the short term.

People tend to forget the things they are not reminded of again and again. Think about advertising. It takes a large number of repetitions for a commercial to raise interest in a product or service, not even mentioning that the market is already supersaturated with ads, promotional emails, promos and intros that interrupt daily lives, only to annoy and lose attention of people completely.

The globalisation of online communication changed our societies. This is where the public opinion is formed today. Social media are the new agora of our civilisation. From ancient papyruses to the written word and television, the world we live in has been built on stories, on legends and on tales of conquest and bravery. We are all looking for role-models, for real-life heroes, we want to hear success stories.

By gaining more and more attention from the ones around us, public opinion will begin to create more buzz about multiple sclerosis constantly. The more people that know about it, the better. They can eventually help in influencing political and social decision-makers to focus more efforts on research and finding a cure, onto creating rehabilitation centres and facilitate access to treatment.

WHAT ARE THE SOCIAL MEDIA YOU CAN USE?

There are three main categories of social media that I would like to tell you about. These categories involve three creative ways in which we can share things and an extra one focuses on mixed media. You can use the ones that best suit the way you express yourself, or a mix of the four. Your choice. 

I personally use a mix of blogging, Facebook, Instagram and Twitter to share my stories, because I feel more confident writing and taking pictures.

WRITING - Mostly used in blogging. Platforms like: Blogger, Wordpress, Medium, Twitter.

PHOTOGRAPHY - Displaying bits and pieces of your daily life, experiences and favorites. Platforms like: Instagram and Snapchat.

VIDEO - For those of you who wish to record themselves vlogging or telling your story. Platforms like: YouTube, Vimeo, Periscope (live chat using video).

MIXED MEDIA - Can’t decide on one type or want to have more tools in your storytelling belt? Platforms like: Tumblr (text, images, gifs), Snapchat (video and images), Facebook / Twitter / Instagram for their native video capabilities or for their microblogging (text) ones.

WHY IT'S EASY TO TELL YOUR STORY

We like to be given attention, to be able to talk about ourselves and to be listened to. What better way to do this than to use social media? Be constant. Be present. Show your life events with and without multiple sclerosis. Celebrate your wins and share your loses. Let the world know that multiple sclerosis is real, chronic and that it must be cured.

You might not want to disclose your identity. Social can help with that. Create a public persona that will make you feel safe, whilst still be able to be present online. There are countless others who have already put a face on MS. In raising awareness, your story counts. The more voices tell the world about multiple sclerosis, the better.

We all have a story to tell. Some unbelievable ones, I assure you. Stories that the world can learn from. Stories about hardship, human resilience, about helping each other, stories of strength, of needs, dreams, anger, sadness and happiness. All human, all about survival. It’s all about ourselves, but it’s also about sharing it with our communities.

In the 21st century, the power of this new media can serve a higher purpose. That of raising awareness to help our fellow humans and by that helping ourselves as a society.

LET'S MAKE IT A REALITY

Share this short manifesto using the #MS21stManifesto hashtag. The power is always in the community. I invite you to tell your story.

As always, transformation comes from within.

Sincerely,

Alex

Contemporary Portraits. What The World Needs to Know About Multiple Sclerosis

This morning when I woke up, I thought about what my approach will be in today’s article. About what I would like to portray and talk about. And then it hit me! Por-tray… hmmm! A portrait is an image of an individual which other persons look at. How is MS seen by the world? And then the words began to flow upon my keyboard.

Let me talk to you about a few concepts first. There are two opposite terms in sociology, one referring to the people inside a certain group (ingroup), and the other reffering to the people outside that group (outgroup). Society itself is made out of different communities and subcultures. 

Human beings come together based on common interests, social status or gender. You get the point. The multiple sclerosis world community is the ingroup in this picture. The outgroup is society at large. Let's see how people get to know things.

Now, we all have the tendency to judge or label what we don’t know. It’s how our brain works. It quickly makes up its mind about a certain situation, object or person, so that it can better identify it and place it in the right category. We all have all kinds of categories. For the sake of this article, I’ll simplify them and talk about only two:

• the things we accept
• the things we reject

We tend to accept more the things we have information about, the things that are recommended by somebody else, the things that we like, the beautiful and healthy ones.

On the opposite part, we tend to reject the things we don’t know much about, the things nobody heard of, the things we don’t like, the ugly and sick ones.

The Portrait of MS Seen By Others

That leads me to the second point of my blog today. How are people with MS seen by others? By the outgroup? 

It’s kind of tricky, because multiple sclerosis is often an invisible disease. How do you explain it to people? For instance, you tell them it is a potentially debilitating condition that affects the brain and many of its capabilities and they imagine a person in a wheelchair, drooling and being cut out of this world. And it is truly not their fault.

We, the ones who have multiple sclerosis, keep maintaining the same perception on the condition in people’s mind. We hide it like it’s something contagious, disgusting or tabu, and then we get mad of the world for not being aware of our sufferings. Ahm… that’s a pretty strange behavior if you ask me. In general, you can’t help a person who doesn’t want to be helped.

Why we fear sharing MS?

We are afraid of being judged. We are afraid of being rejected. We are afraid of people feeling sorry for us. Because so is the public perception, that when you tell someone you are ill, they immediatelly think you are helpless and need to be cared after. In some cases of MS this might even be true, but for most people who have just been diagnosed, the situation is the opposite.

Many of us are young people, between the ages 20 and 40, in the prime of our lives, who have careers, plans, relationships and dreams. We are what society calls “normal”. And then add MS to the equasion. It makes you feel different. Not for yourself, but for the way you think people might look at you.

Having multiple sclerosis is scary, because we are confonted with the biggest fear of human beings: the fear of the unknown. We always tend to control the environment around us.

Since we begin to walk, the tendency to explore and conquer the reality around us is everpresent. Seeing, hearing, tasting, smelling, touching, walking, jumping, throwing, running, climbing trees, riding a bike, a car, skiing are just ways in which we get to control what is surrounding us. But when your senses fail, you get scared. And you hide even more.

You lie to yourself and feel the curiosity of people around you. And you hide some more. You begin to look awkward and people stare. You walk funny and people point fingers. You trip and fall and people laugh. The world is spinning around you and what do you do? You hide still. You keep MS a secret. You make people ask themselves questions that you will never give answers to. People want to know. People NEED to know.

So far, the way most of the world perceives multiple sclerosis is as a frightening disease that threatens your capabilities to interact with the world. And it’s true. You already let it do that.

Multiple sclerosis might be a serious condition, a debilitating one and a humbling experience,  but every day I see battles. People that fight against it day by day, year by year. People who have courage, people who challenge themselves, people who keep going, people who have families, people who have dreams, people who have careers, people who are amazing human beings… people like everybody else. 

And the world ignores most of these stories. Because we’re afraid to tell them. Because we’re afraid to be judged. But we’re mostly afraid of being missunderstood. Of being alone. Of being not true to us.

Call to action

We must open the conversation. Tell people our stories. Tell them the good, the bad and the ugly truth about living with multiple sclerosis. We need to make people understand what MS is, what it does and what needs to BE done in order for it to stop randomly ravaging people all over the world.

So, I challenge you to a dialogue. To start a conversation about your life with MS, about the stories you feel like sharing to the world, the ones that you need to let go of your chest.

We are all human beings and need support. We need to face our fears. We are stronger together in the face of adversity.

Come, let us talk! The world is listening.

Sincerely,

Alexandra Celic

P.S. The Contemporary Portraits of MS Interview Project is starting soon, begining this August. Interested in knowing more? Send me an email at smartchoice.livingwithms@gmail.com and I’ll sign you in. An article detailing the whole experience will be posted next week. Thanks for the visit!