As you know, online support groups exist for those living with just about every possible health condition. Some support communities even target very specific discussion group members like Lesbians with breast cancer or Jewish alcoholics, as well as a range of issues beyond medical conditions (e.g. parents of twins, bereavement, victims of professional misconduct).
When it comes to going online to seek information, answers or support from your peers, it does appear that there’s a lid for every pot.
Susannah Fox of Pew Research tells us that 23% of internet users living with a chronic medical condition have gone online in search of others with similar health concerns. She offers a simple definition of what she calls this type of peer-to-peer health care:
“Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people.
“Technology helps to surface and organize that knowledge to make it useful for as many people as possible.”
Online health-related groups are populated not only with patients, but also with undiagnosed people concerned about specific symptoms, as well as people caring for loved ones with the condition.
In an International Journal of Communication paper, Israel’s Dr. Galit Nimrod describes a number of distinct phases that have been identified among those joining, participating in, and leaving online patient groups. These include:
1. Group members in the first phase of the online support group life cycle are described as “distressed newcomers.” As newcomers, they visit the communities quite often, but they may not post much.
2a. When members become more familiar with the online support group, some feel more comfortable and start posting comments or questions to the other group members. These may be described as “active help receivers.” The active help receivers seek knowledge, share content, and socialize with other people. However, not all members choose to openly interact with other members of the group.
2b. Some members may choose to simply follow (or “lurk”). These may be described as “passive followers.” The passive followers prefer reading other members’ content and observing the online dynamic. Although lurking is less satisfying than active participation, it can have similar educational outcomes.
3. As time passes and the shock of being newly diagnosed fades, online support group members are described as “relieved survivors.” Some researchers suggest that online groups are an important factor for many in deciding to seek professional help. New members who are not yet formally diagnosed and treated are often encouraged by their online peers to see a physician.
4a. The more senior members are and the better they start to feel, the less often they need to visit the online groups, although they may remain members for long periods and do not lose interest in the issues discussed. When they do visit the groups, however, they are relatively more active than newer members. An explanation for this may be their belief: “I can be of help to others.” It seems that with time and especially with improvement in their condition, members turn from being passive followers and help receivers into “active support givers.”
4b. Those who leave the online support group after a while often feel that they have learned enough about their condition and the means for coping with it, and can now move on by themselves. These members may simply abandon the group and become “moving-on quitters.”
I’ve observed these phases since 2008, when I first became a member of Inspire’s WomenHeart online support community for women living with heart disease. This forum was, literally, a lifesaver for me in the early days, weeks and months following my heart attack.
I’d go online several times a day back then – first as one of those “distressed newcomers”, lurking in the background to read all the interesting discussion topics being posted by other women like me living with heart disease, then as an “active help receiver” to check new responses to my own urgent concerns, much later as an “active support giver” in response to others’ concerns. And recently, I’ve sometimes posted a question or started a discussion topic to seek a variety of real patients’ perspectives for a specific Heart Sisters blog post I’m writing.
Why have I stuck around all these years?
As Dr. Nimrod reminds us, there’s a well-known personal perk of being a veteran member of any online group.
“Being able to support others is an important benefit, which may lead to empowerment, a sense of being useful, and even finding more meaning in life.
“Members may find some comfort in knowing that their own suffering has not been in vain, as they can now help others. They may also feel that they are now giving back to a community that helped them in their darker days.
“This does not mean that they stop receiving support from the other group members, but there is now a change in balance.”
But online patient groups may not all be the noble grassroots peer-to-peer lovefests that I once believed them to be. And there’s another darker reason that group members become “moving-on quitters”.
It turns out that the very characteristics of online support groups that make them so popular with some patients may be precisely what’s making them less appealing to others.
As Dr. Henry Potts of the U.K. concluded in a 2005 study, published in the journal Health Information On The Internet:
“Online communication is also known to be disinhibited. This means that the nature of online communication, the absence of social cues, and the perceived intimacy and anonymity mean that people may be less inhibited in their online behaviour.
“This may be a positive thing in the context of a support group, helping people to discuss difficult issues, or overcoming problems of embarrassment.
“But disinhibition is also seen as problematic in many online communities when it leads to ‘flaming’ (deliberately provocative or insulting posts) or ‘spamming’ (unsolicited commercial messages).”
During my years as an active member on my WomenHeart online community, I’m seeing increasingly common examples of this flaming and spamming behaviour.
Flaming includes those we also know as “trolls”.
Spamming includes those who are flogging the latest Dr. Oz-approved combination-miracle-anti-aging-heart-cure-dietary supplement sensation.
As Dr. Nimrod explains the life cycle, after certain site visitors become novices, they do not necessarily become active members. They can also become trolls, described as group members with a high level of activity for a short period of time who are mainly interested in disturbing the community.
An example of this happened just last month when a male heart patient decided to join the WomenHeart online community.
EARTH TO MEN: unless you are the spouse/caregiver of a woman with heart disease, please do not under any circumstances join any online group that’s clearly devoted to WOMEN heart patients sharing their cardiac experiences with other WOMEN. (And no, it’s not because we don’t love men – we do!) This would be as inappropriate as if I decided to participate in a men’s online support group. Trust me, nobody there wants to hear from me. Nobody!
After posting a number of his offensive and provocative comments in response to a lively WomenHeart discussion about Mayo Clinic’s Dr. Mary O’Connor and her recent essay on gender imbalance in women’s health care called “The Woman Patient: Is Her Voice Heard?“, the male heart patient in question posted this gem:
“I am sick of hearing the down trodden women were (sic) heart problems are concerned.”
Clearly, this person was not remotely interested in Dr. O’Connor, in participating in the already-active group discussion of her article’s specific points, or in learning how to spell. He was, in fact, your textbook flaming troll.
I jumped in to reply to his rude comments (including his accusation that our opinions on gender imbalance in women’s health care were simply “propaganda”). I suggested that he was clearly out of line, and that if he truly believed what he’s posting online (sick of all those downtrodden women with heart problems), he should leave our group, because each one of us, over 22,000 women members with heart problems, was very likely to make him sick.
On the following morning, the Inspire administrator behind the WomenHeart support group sent me an email advising me that, because I’d asked the troll to leave our group, my response to him had been deleted from the site; my reply was deemed “inappropriate and detrimental to the group.”
My first reaction:
“Wow . . . The trolls are winning.”
This online community is moderated, meaning that an administrator or team of people is working behind the scenes to ensure a consistent environment, ostensibly checking that destructive behaviours such as those of our troll are filtered out.
In this case, however, the admin team had deemed that I was the one who had violated the site guideline: “Don’t tell other members to leave!” which begs the question: don’t trolls deserve to be kicked out? *
But here’s what Jaclyn Friedman has to say about online sites that protect the free speech rights of disruptive trolls rather than the legitimate members of the site. The executive director for Women, Action and the Media, a nonprofit that advocates for gender equality in the media, told a Mother Jones interviewer:
“The idea that a social media network should be entirely neutral is a myth. Neutral platforms are only neutral for straight white dudes.
“These companies need to make a decision: Do I want to be making money off of a platform where abusers and harassers feel more comfortable than the abused and harassed?”
♥ This is the first of a 3-part series on online patient support groups. The other posts in the series are: “Online Patient Groups: Why So Under-Used?” and “What Really Goes On in Your Friendly Online Patient Group?”
NOTE FROM CAROLYN: I wrote much more about how women seek out patient support in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).
* Some of the troll’s offending posts were finally removed by Inspire moderators from the WomenHeart forum post called The Woman Patient: Is Her Voice Heard? after other members also began to post statements to him like: “Please find another place to vent your anger.”
Q: What has your online support group experience been like?