Most people only think about forums, mailing lists, and web sites when they think of how they can use the internet to learn about Crohn's disease, but the world of social media is ripe with possibilities. You can easily connect with those who have Crohn's, get your feelings out about the disease, and keep up with the latest news—all through sharing on Facebook, Twitter, and blogging.?
Some of these social media sites take a bit of a learning curve to master, but they’re worth looking into to find support for Crohn's disease.
Crohn's on Facebook
Facebook is a great place to find online community and support groups to share your struggles with Crohn's disease. Many of these Facebook groups plan meetings in real life for members to get together and discuss their disease.
One popular page is “Crohn's Zone,” based in the United Kingdom. Another United Kingdom-based page is the “Crohn's and Colitis UK” page. It features news about Crohn's disease and about the organization.?
Pages such as “Support Crohn's Disease and Ulcerative Colitis!” are set up by patients who want to share their stories with the world. People post about how they’re feeling and what troubles they’re experiencing, and others respond to them. It’s a great way of coping with Crohn's disease and getting support for your disease.
You could even set up a group and invite others to join you to discuss Crohn's disease. Although most of the existing groups on Facebook require an invitation to join, it doesn't hurt to ask!
Crohn's on Twitter
?Twitter is an entirely different animal from Facebook and requires a different mindset. You can “follow” or see the newsfeeds of prominent people in the world of Crohn's disease.
?For instance, notable gastroenterologists have Twitter accounts and will tweet about new procedures that they’re performing. One such doctor is Eric Benchimol, a pediatric doctor who uses Twitter as a platform to inform people about inflammatory bowel disease. Many notable and newsworthy people are on Twitter and post information every day. You can learn a great deal by following them.
That isn't the only thing you can do with Twitter, though. You can also post about your own struggles and follow other Crohn’s sufferers. You may wonder how you’ll get people to follow you and see your posts. One way of getting people to notice you is to include a hashtag (#) with your post. If you include your message and “#crohns,” anyone who’s searching Twitter for that hashtag will see your post. If that person likes what you’re talking about, they can reply to you, “re-tweet” your message to their followers, or “follow” you. In this way, you can form your own support group on Twitter.
Blogging about Crohn's?
Blogging about your Crohn's disease is another way to build community and get your feelings out. It’s relatively easy to set up a blog: just go to Wordpress.com or Blogger.com, to set up a free blog and start writing. You can detail what you’re going through, how you found out about your condition, and how you’re coping with it.
Blogging is a social media is because anyone can read and comment on your blog. If your blog title is related to Crohn's disease, then people searching the web for Crohn's blogs may stumble upon your site and see what you’re blogging about.
Many blogging communities make it easy to share your blog with others and build a following among people with the same condition. You can also share your blog with people on Facebook and Twitter, to get them to come to the site and make comments. Blogging isn’t for everyone, and you need to have a certain amount of interest in writing to get into it. However, if you want a place to express yourself fully and build a sense of community, it can't be beat.
Before You Start
Before you jump into social media, you'll want to consider what kind of personal information you’re comfortable sharing and what you want to remain private. As Crohn's is a very personal condition, you may want to blog anonymously or tweet under a username that doesn't reflect personal details. Once you get the hang of it, you might want to release personal information, but you aren’t required to.
As with anything on the internet, be wary of people asking serious, personal information and never give out your Social Security number or financial information.