MS Society’s New Online Community
By Nicole Mellin, assistant vice-president, national client services
There are good reasons for young people to be cautious online. Everyone has heard stories about scammers or bullying behaviour in chat rooms or blogs. At the same time, there are also many reasons that youth should be encouraged to visit and take part in appropriate online communities, which can provide a positive experience— especially for young people who are coping with a long-term disease such as multiple sclerosis (MS).
Online communities differ from chat rooms in that users are encouraged to write responses or brief stories instead of quick phrases. Often, these are stories of a personal nature. Blogs or forums encourage in-depth thought and careful consideration. They are, by their very nature, informal and conversational. There is no one style that is appropriate, which is what makes these communities truly diverse and authentic.
Unlike chat rooms, in which information may flash by in a matter of seconds, blogs and forums evolve slowly over time—like a great novel. They allow users to think about what they want to write rather than posting the first thing that pops into their heads.
Many blogs and forums also offer a section dedicated to current debates or serious matters (such as disclosing an illness when dating or managing an illness while living on your own for the first time). Young people can research and post at their leisure, read rebuttals and then refute them. This process builds cognitive understanding as well as a knowledge base on subjects that might not be covered in school or through conversations at home or with friends.
That is why the MS Society of Canada recently created a new online community for young Canadians who are impacted by MS. The MS Society recognized, after reviewing the results of a research project on social innovation and youth, that its traditional service-delivery model did not fully capture, engage or support youth in a comprehensive and age-appropriate way.
The MS Society created a national MS youth advisory group of young people impacted by MS to provide advice on how the organization could reach youth who have MS or who have a close family member living with MS. One of the group’s recommendations was the development of an online MS youth community.
Someonelikeme.ca was born from that idea. The site is a platform through which young people can both learn more about what it’s like to live with MS and become more involved in the fight to end MS. The site allows people who have been affected by MS to share stories and convey their experiences to others. This community of online contributors includes those with MS, those who are facing the prospect of a diagnosis and those who have a loved one (or who are supporting an individual) who is living with MS. The site is rich in content about key topics around MS. Everyday heroes share their stories about everyday challenges and coping mechanisms for living with MS.
Young people who visit someonelikeme.ca can contribute to lively discussions and conversations about MS and obtain information to help themselves or someone they care about. The site is accessible to everyone who has registered, and allows for discussion of issues in a safe, diverse and respectful environment.
The MS Society of Canada is deeply appreciative of the growing number of partners and supporters who have contributed to someonelikeme.ca in the past year. One of those early pioneers was Aaron Solowoniuk—drummer with the band Billy Talent. He is also the MS Society’s first MS youth ambassador. Diagnosed in the late ’90s with relapsing-remitting MS, Solowoniuk has supported young Canadians living with MS by raising funds and building awareness through his involvement in art shows, golf tournaments and rock concerts around the world. Solowoniuk is a philanthropist, fundraiser and agent of social change who is passionate about the MS cause.
Recent Postings On someonelikeme.ca
“I’m not even sure how to describe how helpful it has been to be able to talk to other people who understand, not only what the physical side of all this feels like, but also how it feels emotionally. The wealth of information in the “toolbox” portion of the site has been instrumental in helping me understand a lot of the things I’ve been going through. I can’t say enough good things about someonelikeme.”
“When I was first diagnosed, about a year and a half ago, it was hard, and it is still hard to deal with. yes, I have my family and a few select friends for support, but when I found out about this site, it was like a breath of fresh air. having the opportunity to talk to other people that are going through the same thing I am, or just read their stories... I can’t even put a price on that.”
The Multiple Sclerosis Society of Canada is the only national voluntary organization in Canada that supports both MS research and services for people with MS and their families. 
Landscape of Literacy and Disability (Canadian Abilities Foundation publication) by Ezra Zubrow, et al. 
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