How to Click Into Online Support for a Chronic Condition
Allison Caggia, 41, felt her type 1 diabetes was well-controlled through dietary changes and daily blood sugar checks, but she wanted to take the next step by exercising in a way that was safe for her medical condition.
Not surprisingly, the Internet was packed full of advice, but she skipped the standard Google search and went instead to a source she knew she could trust: her online community.
Within a day, she had personal stories about diabetes and working out from her online friends, comparisons of cardio versus strength training, and extremely valuable tips about blood sugar management before and after workouts.
Finding your people
Even if you never meet community members online, that feeling of someone having your back and knowing what you’re going through is exactly the same in cyberspace as it is in real life, Caggia believes.
“These are people fighting the same thing that you are,” she says. “They’re there for you, and it makes a huge difference.”
Although a social network like Facebook might be helpful for informing friends and family of your treatment progress, it’s condition-specific sites that can be especially helpful for building a strong base of support, says Caggia.
These include sites like Inspire.com, healtheo360, and HealingWell.com. Many associations also run online communities, such as those managed by the American Diabetes Association and the American Heart Association.
Caggia found her online community about four years ago, when she was diagnosed with type 1 diabetes. No one among her family or friends had the condition and despite doing plenty of online research about ways to keep her blood sugar in check, she was feeling alone.
“Five months after my diagnosis, I was completely depressed and isolated,” she says. “But then I found some online communities and everything turned around.” She found recipes for low-carb meals and a group centered on fitness efforts. Thanks to those connections, she joined a gym and now loves cooking for herself.
“I feel like I’ve become stronger, mentally and physically,” she says. “It’s funny, because there are so many friends that I have now who have seen me through my ups and downs. And yet I’ve never met them.”
Shutting down the trolls
Although turning to social networks can be hugely beneficial for discovering a sense of connection, there can be some pitfalls as well, Caggia says. Like any social media platform, condition-specific sites might attract a few “trolls” who are consistently disagreeable or even aggressive.
Fortunately, unlike on Facebook or Twitter, there are usually more moderators at these sites to block users like this, according to Courtland Long, vice president of marketing and communications at healtheo360, a site with numerous condition-specific communities. She used the site herself while going through breast cancer treatment.
“Like other sites that are set up to support people, we have very specific terms and conditions,” she says. “We set the guidelines for how to interact, and if someone seems unwilling to follow those guidelines, they will no longer be allowed on the site.”
So, if experiences with Facebook groups have left you reluctant because of sour users, you might want to give condition-specific support communities a try, Long adds.
Make the most of the online experience
If you’re considering sharing your experiences online, here are some tips that Caggia and Long suggest for making the most of your experience.
- Introduce yourself. If you’re new to a group, it’s fine to “lurk” for a little while to observe discussions, but it’s much better to jump in and connect. Share your story in a way that feels comfortable to you, and get to know others in your group.
Don’t be afraid to ask questions. This can be one of the most valuable parts of an online community—the recognition that yes, what you’re feeling is normal for what you’re facing. For example, Long asked about fatigue levels while she was going through radiation for her breast cancer and was comforted by hearing that others had experienced similar issues.
Connect one-on-one if you feel it would be helpful. Some sites let you have private online chats, and Long appreciated the opportunity since she had breast cancer in her 30s. Being able to “talk” with other young women who had the disease made her feel more comfortable.
Go to events. Often, those who connect online find others in their geographic area and have meetups. This can be a great way to deepen your bond with those you chat with online, and expand your social network, especially with people who know almost exactly what you’re going through.
In general, regard any site as a complement to your in-person support network, Caggia says, and consider how you feel as you’re connecting with others online. Sometimes you may have to go through a few sites to find the right fit, but when you do, you’re likely to discover a welcoming, empathetic online community.
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