This article was originally published on The Establishment and republished with permission.
Content warning: suicide
I was diagnosed with post-traumatic stress disorder (PTSD) several years ago, and despite being proactive in treating it, I am still bent by its weight. I find solace in a few key places: at home with my husband and dog, in my therapist’s office, alone in nature, during peer support meetings — and online.
Because I was initially too ashamed and fearful to talk about my feelings with anyone in person, I actually turned to online spaces first for support. Since then, Facebook groups, in particular, have been a boon for my mental health.
In this, I’m not alone; for many battling depression and other mental illness, social networking sites are the only place they feel understood. According to 2012 figures released by the National Cancer Institute, online peer-to-peer support for depression was used by an estimated 7.5 million adults in the United States. And a 2010 PEW survey found that 25% of internet users who have a chronic health condition go online to connect with other people who have the same health issues.
Critically, the internet can be used as a tool to subvert mental-health stigmas that remain pervasive; online, people can disclose things about themselves but still be protected by a cloak of relative anonymity. Online groups can also be particularly helpful for trauma survivors, who tend to isolate in an attempt to hold onto a shred of personal agency. The internet keeps the door to the outside world ajar just enough to make it possible for help to sneak through.
I have lived through suicidal ideation and urges, and the only place I was honest about it was online. I encountered people who told me that, even if I didn’t believe it, I could feel better someday. They told me to hold onto a sliver of hope, and in my darkest hours, this was my saving grace.
But not everyone is so lucky. Hope is not what we always find.
People who have PTSD have experienced one or more traumas that shattered their sense of self and ripped away their trust in the natural order of things. I liken the experience to losing an innocence you were never supposed to lose.
When the self is wrecked like this, it needs to be rebuilt — and that requires creating or strengthening honest and supportive relationships. Unfortunately, one of the symptoms of PTSD is that it becomes difficult to foster these critical social connections because sufferers feel disproportionately guilty about being a burden to those around them. The Interpersonal-Psychological Theory of Suicide claims that this “perceived burdensomeness” is a risk factor for suicide.
And herein lies the problem: While online spaces can provide access to critical relationships, they can also amplify feelings of low self-worth.
How we think about ourselves is shaped by the feedback we receive from the outside world and the way we process that feedback, which psychologists describe as self-talk. Multiple studies have found that negative self-talk and the subsequent negative opinion formed of the self is an important predictorof PTSD. People with PTSD are particularly sensitive to input that even vaguely resembles their past trauma, which can make engaging in conflict resolution challenging. Many of us with PTSD try to avoid conflict because we often internalize disagreements as proof of our pre-existing negative self-appraisal.
I know first-hand how criticisms, both real and imagined, can be heightened in the state of vulnerability caused by PTSD. I expect the worst, my entire body fearful of potential fallout. In online communities, when I’ve been blocked or unfriended by someone I thought I was close with, it’s served as fuel for my negative self-talk, intensifying my belief that I’m a burden.
So does this mean people should turn away from online support groups? Definitely not. But it is imperative that these groups be handled with care.
One thing I’ve learned, for example, is that it’s important to not rely solely on online support groups for help. I realized I was especially prone to negative feelings online if I was not feeling supported by offline relationships. When the internet was my only means of seeking mental health support, I needed my online communities to accept me, which set an impossibly high bar.
Perhaps more importantly, it’s crucial that the moderators of online support groups handle their role thoughtfully. Those in positions of power have a greater potential to make us feel ostracized, so we need empathetic and patient moderators to thoughtfully mitigate problems.
In support groups I’ve been a part of, I’ve witnessed first-hand how poor moderation can cause serious issues. In one forum, a member expressed that they wanted to discontinue receiving treatment because their PTSD never seems to let up and some of the therapy they’d gone through was more harmful than helpful. They said they wanted to give up and that they didn’t care anymore.
One particularly aggressive response to the post said, “Can I ask that if you really don’t care anymore then what is the point of this post?” It was a question asked by a moderator. For someone with PTSD, that question is extremely easy to take in a negative way. It doesn’t internalize as, “Maybe if I’m asking this then I do care more than I realize.” It internalizes more like, “I knew it, I’m never going to get better, I should just shut up.”
The framing of the question was harmful and could discourage future people from opening up. PTSD feelings are complex, and it is normal to have mixed feelings about treatment. It’s okay to not care and to care at the same time. It’s also okay to feel like giving up and to ask for support at the same time. I was blocked by the aforementioned group for “splitting admins” by disagreeing with that moderator and tagging other moderators to check in on the conversation.
Helga Luest, a trauma expert and advocate who founded the group Trauma Informed, explains that moderating a group of trauma survivors is complicated. I asked her about how she deals with arguments, especially if someone is unhappy with her moderation. She says, “There are almost weekly ‘conversations’ where people get heated, offended [or] don’t agree with the posts. I explain that the content is there so we all have a big picture impression of information out there.”
When it comes to kicking people out of the community, Luest told me that she is not a fan of blocking members and has only had to do so twice in the last three years due to offensive content being posted. As for everything else, she says, “We don’t have to agree, but we do have to be respectful of differing opinions. To shut that out wouldn’t afford the really rich conversation that takes us out of a comfort zone and to a place of deeper understanding of other perspectives and experiences.”
People with PTSD recover faster when they feel empowered and included, so one easy way to develop a code of conduct for these online communities is to involve all the members. Moderators can ask for feedback, be open to suggestions, and be willing to put the group’s needs ahead of personal ego. Having a set of guidelines can make it easier mitigate conflict anxiety.
I know from experience how a robust support system online can be an extremely useful tool; I’ve been able to find empathetic people online, and maintaining relationships on the internet has helped me learn how to maintain relationships in real life.
At the same time, these communities can foster the negative feelings they should be working to thwart. As with anything involving mental health, the solution lies in exercising understanding, patience, and thoughtfulness.
With these parameters in place, support groups can do exactly what they’re designed to do — offer genuine, caring, crucial support.
Kristance Harlow is a writer, anthropology nerd, awkward-enthusiast. Read more of Kristance’s writing here.