MS in the 21st Century - 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 globalization of online communication changed our societies. This is where the public opinion is formed today. Social media are the new agora of our civilization. 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 centers 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 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. Yours truly, Denisa