From the early days of its existence, the Internet has always been a place to go for information about chronic diseases. Information alone however, doesn’t usually alleviate the isolation that often comes with an uncommon chronic illness. Even if an individual has a well-meaning and supportive network of friends and family, these relationships often can’t substitute for a real connection between those who are undergoing the same challenges and issues presented by a chronic ailment. It is not always enough to simply be told that you are “not alone”. This is where social media can help fulfill the needs of individuals suffering from a chronic disease, not only in accessing related information about particular disorders, treatments and side effects, but also, on a more profound level, connecting those with similar experiences together.
To demonstrate, let’s look at Crohn’s disease.
Crohn’s disease is an inflammatory bowel disease that impacts the lives of about 200,000 Canadians. According to World Bank data, the population of Canada in 2011 was about 34.5 million. So, about 1 out of every 172 Canadians suffers from Crohn’s disease. If we look at a town like Niagara-on-the-Lake (2011 population of 15,400), if the town follows the statistical average then there will be about 90 Crohn’s patients in the town. That might seem like a lot of people, but in reality that’s less than 2 buses full, and what are the odds that you know all (or even any) of them?
Try contrasting this with a startup website such as Crohnology, which is a social network created specifically for patients suffering from Crohn’s or Colitis. Obviously, this sort of a community will be a far easier place to build the sort of relationships that can provide support and empathy to people struggling with a chronic disease.
The challenge of finding supportive interactions with fellow patients diagnosed with a chronic disease gets far more challenging with less-common diseases. What if you live in a small town, and are the only person in your area dealing with a specific disorder? While there are about 200,000 people in Canada who suffer from Crohn’s diesease, there are many rarer diseases, such as Gaucher’s disease (a genetic disease in which a fatty substance accumulates in certain organs and cells), in which only 1 out of every 50,000 people are affected. This means that there are only approximately 690 people with Gaucher’s disease across all of Canada. (Incidentally, there is an organization for people suffering from Gaucher’s disease at www.gauchercanada.ca.)
The power of social media lies in bringing people with similar interests together, no matter where in the world they live. When it comes to chronic disease, social media is already doing an amazing job of bring together people living with the same illnesses. The big challenge will be in mobilizing the strengths of these communities to inform and empower people to be better stewards of their own care.
Want to talk more about the opportunities social media offers in healthcare? Sign up for our amazing panel event on October 24th. Register now before it’s too late!