It was Christopher’s therapist who suggested he look for help online. His wife had cheated on him, and he had been struggling since their divorce, but the $25 copays were adding up. His therapist proposed an online support group—free, discreet, available 24/7.
So he went, naturally, to Facebook, where a search turned up multiple private groups for people dealing with a partner’s infidelity. (Christopher had divorced his wife after finding out that their daughter was not his biological child. When I interviewed him, he asked that we withhold his real name.) From there, he got invitations to other support groups on Facebook, more targeted and even more specific: a group for families dealing with misattributed paternity, a group for children learning the same from DNA tests.
The support groups Christopher stumbled into are just a tiny corner of the vast ecosystem of private Facebook groups. Over the past year, the company has been consciously emphasizing groups—part of an effort, per Mark Zuckerberg, to “give people the power to build community and bring the world closer together.” These groups cover interests ranging as widely as the human imagination. Many are “closed,” which in Facebook terminology means they are findable, but only members can see their content. Some are “secret” and unsearchable, and membership is by invitation only.
It’s not surprising, then, that Facebook has turned into a gathering place for strangers sharing their deepest secrets. Emotional-support groups have sprung up around topics broad and narrow: diabetes, addiction, egg donation, a specific birth-control device now pulled from the U.S. market, parenting children who might grow up to be psychopaths, rare diseases that affect only a few dozen patients in the whole world. The internet has always promised to connect people by common interest rather than geography, and with its 2-billion-user base, Facebook is where those connections are often being made. “For people searching for support, [Facebook] is a one-stop shop,” says Andrea Downing, a moderator for BRCA Sisterhood, a support group for women who have tested positive for breast-cancer mutations.
Downing carries a mutation for BRCA1, which can raise the risk of breast cancer to more than 70 percent. Finding that out was devastating. “I did not know anybody who was going through the same experience,” she says. “When you can’t even talk to your own friends and family about what you’re going through, just living with that is really hard.” She eventually found out about BRCA Sisterhood on Facebook, where she suddenly found a few hundred women who understood exactly what she was going through. The women, she says, were a “lifeline.” They divulged their anxieties. They shared the latest research. They posted photos of their preventive mastectomies. BRCA Sisterhood has now grown to 10,000 members. (...)
Since Facebook has pivoted to groups, it has added several tools for group admins, including ways to filter membership requests and delete content from banned members. Most important, perhaps, it made the membership of closed groups private. Until earlier this year, nonmembers could see who had joined a group even if they could not see the posts inside. (Secret groups are unsearchable, and their membership lists have always been private.)
This had created obvious problems for support groups, which want to be findable but don’t want to broadcast their members’ private lives. Last year, Catherine St Clair decided to start a support group for people whose DNA tests revealed unexpected biological parents, after meeting another woman in the same situation on Facebook. St Clair created a closed group because she wanted other people to find it. And, of course, she invited the other woman. This was before Facebook made the change, and her membership quickly became public. “When she realized that, she dropped out real fast,” says St Clair. (...)
Anyone can start a Facebook group—including people trying to profit off one. While many founders of support groups are people simply trying to find others like themselves, some have used the groups as extensions of their business. In November 2017, The Verge investigated a prominent group called Affected by Addiction, whose founder was even invited to speak at Facebook’s first Communities Summit earlier that year. The founder, it turns out, was also a marketer for treatment centers that mined the group for potential patients, according to The Verge. The ties had not been disclosed.
Other groups are more up front about selling services. For example, the Infidelity Support Group—20,000 members strong—is run by Bob Huizenga, whose pinned post urges users to sign up for his “FREE Introductory Level of the Infidelity Recovery Center” before pushing additional services that cost as much as $915.
For patient-led groups, money is also a tense topic. Some have entirely banned fund-raising, even for a good cause. “Once it happens, everybody jumps on the bandwagon,” says Downing of BRCA Sisterhood. “We have purposely and carefully kept it out of the group.” Facebook support groups, after all, are full of emotionally vulnerable people trusting strangers on the internet. It’s the kind of access scammers dream of.
So he went, naturally, to Facebook, where a search turned up multiple private groups for people dealing with a partner’s infidelity. (Christopher had divorced his wife after finding out that their daughter was not his biological child. When I interviewed him, he asked that we withhold his real name.) From there, he got invitations to other support groups on Facebook, more targeted and even more specific: a group for families dealing with misattributed paternity, a group for children learning the same from DNA tests.
The support groups Christopher stumbled into are just a tiny corner of the vast ecosystem of private Facebook groups. Over the past year, the company has been consciously emphasizing groups—part of an effort, per Mark Zuckerberg, to “give people the power to build community and bring the world closer together.” These groups cover interests ranging as widely as the human imagination. Many are “closed,” which in Facebook terminology means they are findable, but only members can see their content. Some are “secret” and unsearchable, and membership is by invitation only.It’s not surprising, then, that Facebook has turned into a gathering place for strangers sharing their deepest secrets. Emotional-support groups have sprung up around topics broad and narrow: diabetes, addiction, egg donation, a specific birth-control device now pulled from the U.S. market, parenting children who might grow up to be psychopaths, rare diseases that affect only a few dozen patients in the whole world. The internet has always promised to connect people by common interest rather than geography, and with its 2-billion-user base, Facebook is where those connections are often being made. “For people searching for support, [Facebook] is a one-stop shop,” says Andrea Downing, a moderator for BRCA Sisterhood, a support group for women who have tested positive for breast-cancer mutations.
Downing carries a mutation for BRCA1, which can raise the risk of breast cancer to more than 70 percent. Finding that out was devastating. “I did not know anybody who was going through the same experience,” she says. “When you can’t even talk to your own friends and family about what you’re going through, just living with that is really hard.” She eventually found out about BRCA Sisterhood on Facebook, where she suddenly found a few hundred women who understood exactly what she was going through. The women, she says, were a “lifeline.” They divulged their anxieties. They shared the latest research. They posted photos of their preventive mastectomies. BRCA Sisterhood has now grown to 10,000 members. (...)
Since Facebook has pivoted to groups, it has added several tools for group admins, including ways to filter membership requests and delete content from banned members. Most important, perhaps, it made the membership of closed groups private. Until earlier this year, nonmembers could see who had joined a group even if they could not see the posts inside. (Secret groups are unsearchable, and their membership lists have always been private.)
This had created obvious problems for support groups, which want to be findable but don’t want to broadcast their members’ private lives. Last year, Catherine St Clair decided to start a support group for people whose DNA tests revealed unexpected biological parents, after meeting another woman in the same situation on Facebook. St Clair created a closed group because she wanted other people to find it. And, of course, she invited the other woman. This was before Facebook made the change, and her membership quickly became public. “When she realized that, she dropped out real fast,” says St Clair. (...)
Anyone can start a Facebook group—including people trying to profit off one. While many founders of support groups are people simply trying to find others like themselves, some have used the groups as extensions of their business. In November 2017, The Verge investigated a prominent group called Affected by Addiction, whose founder was even invited to speak at Facebook’s first Communities Summit earlier that year. The founder, it turns out, was also a marketer for treatment centers that mined the group for potential patients, according to The Verge. The ties had not been disclosed.
Other groups are more up front about selling services. For example, the Infidelity Support Group—20,000 members strong—is run by Bob Huizenga, whose pinned post urges users to sign up for his “FREE Introductory Level of the Infidelity Recovery Center” before pushing additional services that cost as much as $915.
For patient-led groups, money is also a tense topic. Some have entirely banned fund-raising, even for a good cause. “Once it happens, everybody jumps on the bandwagon,” says Downing of BRCA Sisterhood. “We have purposely and carefully kept it out of the group.” Facebook support groups, after all, are full of emotionally vulnerable people trusting strangers on the internet. It’s the kind of access scammers dream of.
by Sarah Zhang, The Atlantic | Read more:
Image: Prostock-Studio/Shutterstock
