Online support communities offer patients, people, caregivers, family members, and even professionals the opportunity to engage with one another in an environment designed to encourage discussion. Not only do people engage in emotional support and discussions, but they also exchange valuable information about their own research, experiences, and techniques that work for them.
Support communities are so much more than a simple social group with a shared purpose. They serve as a lifeline to a person in crisis or need, and the newly-diagnosed who is scared their life may never be the same.
So how do you authentically engage in such communities?
When I say “authentic,” I mean to engage meaningfully and mindfully — in a way that’s honest and open with others within the community. To engage authentically is to to understand your health or mental health condition, embrace it, accept it, and make it your own. An online support community can help you do that.
Why do you want to bother to engage or join an online support community of any kind? Because people who do generally feel better about themselves. And those who are actively engaged in feel best about their engagement in an online community. So it’s beneficial that if you’re going to try out an online community, you give it your full effort.
1. Introduce yourself.
This may seem obvious, yet in running online communities now for over two decades, I’ve found you actually have to encourage people to do this. People are uncertain of the social mores of any particular group or online community – especially one that’s been established for years.
Introducing yourself helps do two things. It immediately makes you an active participant within the community, which improves your chances of gaining benefit from it (Houston et al., 2002). And it lets others know, “Hey, here’s a new person. Let’s see if we can help them out…”, or maybe, “They’ll know something that can help me out.”
2. Share what’s worked — and what hasn’t — for you.
While most people might consider online support groups for a health or mental health concern primarily about emotional support, they’re also about exchanging valuable information. Information about treatments, side effects, and what to expect as the condition progresses that you won’t find in the research literature, in most books, or virtually anywhere else online.
While some sites try to quantify this data with pretty graphs, the real value is the personalized exchange of information that directly benefits a study consisting of a single subject — you. It’s the ultimate personal research study, because it’s all about finding out (and sharing) what’s worked for you (and what hasn’t).1
3. Stay engaged.
People who stay engaged in a support group for at least 6 months are likely to benefit from it in the long-term more so than people who visit a group for a few days, and then disengage (Griffiths et al., 2012). Generally, the more you contribute and stick with a health online support community, the more you’ll benefit from it.
This means contributing to conversations and discussions of interest to you regularly, and ensuring you share in the community-building activities that made you feel welcomed at first too (like welcoming new members, offering to volunteer to help out if you can, etc.). “Results revealed that compared to posters, members who only read the messages (lurkers) scored lower in receiving social support and receiving useful information in empowering processes, and lower in satisfaction with their relationship with group members.”
4. Lurking is okay too — but try not to.
Many people complain, “Well, the group has 5,000 members, but I only see the same 10 or 20 people posting all the time.” That’s the norm and there’s nothing too much wrong with that. In fact, lurkers — people who simply read other people’s posts and don’t post much themselves — can benefit almost as much as active participants do.
Mo et al.’s (2010) research sums it up:
“Results revealed that compared to posters, members who only read the messages (lurkers) scored lower in receiving social support and receiving useful information in empowering processes, and lower in satisfaction with their relationship with group members.” However, they conclude: “Our results suggest that lurking in the online support groups may be as empowering as reading and posting messages to the groups.”
Other research (van Uden-Kraan et al., 2008) confirms that if you are a lurker, you may not enjoy the group as much:
“Lurkers were significantly less satisfied with the online support group compared to posters.”
But that you will still receive significant gains:
“However, lurkers did not differ significantly from posters with regard to most empowering outcomes, such as “being better informed,” “feeling more confident in the relationship with their physician,” “improved acceptance of the disease,” “feeling more confident about the treatment,” “enhanced self-esteem,” and “increased optimism and control.””
So while lurking may be the most comfortable thing for you to do, try your best not to. Think of an online support group as an opportunity to reinvent yourself, even if just a little.
5. Make new online friends.
Making some new friends in an online support community creates an emotional bond with the community. You begin to care about coming back and sharing your experiences, because you matter to others and they matter to you. More importantly they know what you’re going through like many others in your life may not. They’ve been through a similar experience too, and shared experience is a core component of authentic engagement.
Online communities were the original 1.0 social networking websites. Just like popular social networks, most online communities today allow you to friend others, and share photos, links and more. Friends — whether online or off — are an important component of your social support system. So even if you don’t have a lot locally, you can still make them online.
6. Don’t be afraid to share your opinion — respectfully.
Many people participate in online support groups to better understand the illness or condition they face. They can’t do this very well if everyone remained quiet, or didn’t share their honest opinions about a specific treatment or how a person was treated by a healthcare professional.
The more you speak up and share your opinions with others, the more others will come to understand your own experiences and knowledge.
However, it’s important to do so respectfully. If touching “healing stones” has helped relieve another person’s stress, you can say, “I tried that once, but it did nothing for me.” It’s far less helpful to say, “Healing stones are a crock and anybody who tries them is just getting scammed.” Try and leave judgment out of your replies.
7. Believe the best in others.
Sometimes it’s hard not to be cynical about our online engagements. While many engage thoughtfully in online communities, others seem bent on being provocative or argumentative.
So it helps to always try and believe the best of intentions in others, rather than to assume the worst. When in doubt about another’s behavior in an online community, ask them privately what they meant, to clear up misunderstandings sooner rather than lettering them fester. Maybe something written in a forum seemed meant for you, but the member was really talking about a family member.
Griffiths et al. (2012). The effectiveness of an online support group for members of the community with depression: A randomised controlled trial. PLoS ONE, 7, ArtID e53244.
Houston TK, Cooper LA, Ford DE. (2002) Internet support groups for depression: A 1-year prospective cohort study. American Journal of Psychiatry, 159, 2062–2068.
Lintvedt, OK, Griffiths KM, Sørensen K, Østvik AR, Wang CEA, et al. (2011). Evaluating the effectiveness and efficacy of unguided internet-based self-help intervention for the prevention of depression: a randomized controlled trial. Clinical Psychology & Psychotherapy.
Mo, Phoenix K. H. Coulson, Neil S. (2010). Empowering processes in online support groups among people living with HIV/AIDS: A comparative analysis of ‘lurkers’ and ‘posters’. Computers in Human Behavior, 26, 1183-1193.
van Uden-Kraan, Cornelia F. Drossaert, Constance H. C. Taal, Erik Seydel, Erwin R. van de Laar, Mart A. F. J. (2008). Self-reported differences in empowerment between lurkers and posters in online patient support groups. Journal of Medical Internet Research, 10, 101-109.
- Unbeknownst to many, psychology and medicine have long recognized the value of single-subject experimental designs — they’ve been publishing such studies, and single case studies, in the literature for the past century. [↩]