By Katie O’Leary.
If there is one thing I learned the hard way from 2018, it is taking accountability and agency for your friendships through cyber groups and support groups and not relying on anyone else for support. Now, I don’t mean you can’t rely on your friends for support at all. I’m talking about the digital age of friends online. Support groups and Facebook groups where we meet people online, thinking we can inherently trust and lean on others simply because we share common interests, illnesses, or hobbies.
They say one of the most important things you can do for yourself is cut toxic people from your life, as they will poison you and your drag you down. And boy, did I learn that the hard way. Facebook has come under immense scrutiny; many cannot discern what is real news, who is a bot, what is fake and what is real.
I was once a part of a CRPS support Facebook group that was run by a young woman, who turned out to be a completely different person, who encouraged members to do unthinkable things (like record themselves pushing through their pain against doctor’s orders). When this administrator was exposed, they disappeared and the group was left in shambles. They inherently trusted the administrator, because they were in a position of power. They trusted Facebook, because they believed there were policies in place to protect them from abuse and privacy violations. But in reality, nothing was in place to protect us – only ourselves. And we let our pictures and information be taken by this person.
The group went on and eventually all of the people in that group were then formed into a new group. New administrators took over. New rules were put in place. But I naively did not see until recently, how things did not change for the betterment of the members. Membership reached several thousand (and is probably still climbing), but there weren’t members who were consistently posting every day.
Most days, if someone did post, the first thing they would say would be: “I don’t know if I can say this” or “I’m sorry if this isn’t allowed”, or “This will probably be taken down because it isn’t a positive post”. etc. The group had become so focused on tip-toeing around what they were allowed to say, because they were not allowed to be “negative” in the support group. Is this wrong? Research shows that being negative re-wires the brain and can cause more neuropathic pain. But for many patients with CRPS, I began to notice that instead of positive posts – there were roughly 20-30 member posting out of 2000 people.
Maybe that is normal? Maybe the information shared and collected was enough. But over the last few months, I have reached a conclusion that makes sense and has quieted the nagging feeling inside of me about this group: it was about having an audience.
I had placed so much trust in the main admin running the group (the other had taken an extended leave of absence) because they had invested so much time and energy in the people, that I didn’t see the dangers in the power they had over member’s time and lives. I had forgotten the simplest truth: this person was not perfect, they were not trained to deal or manage people on a large scale, and they were not my friend.
Because having over 2,000 people you can post videos to, give advice to, publish documents and spread information to – that is ADDICTING. Who could stand to be questioned or confronted when you have that big of an audience? And if you have conflict, and are ill equipped to deal with it – isn’t it easier to just block and dispose of members than actually see them as people? You can easily replace them within minutes.
Now, it would be unfair to say that Facebook support groups do not help people or do not garner real friendships. Of course they do, and I have gained true friendships and I am a part of groups that are wonderful and decent. And many people are still in this group and have a positive experience – it wouldn’t be fair to exclude them. For those who enjoy this group for what it is – that is your choice and yours alone and if you are happy and fulfilled, that is all that matters. But for me, I know now that a group only works when there is true freedom of expression, when support comes from all angles and not just one person privately messaging members, and when rules are for safety – not for an agenda.
But you have to navigate and investigate people on your own; do not rely on anyone else to do it for you. When it comes to your own support and your chronic illness, you have to surround yourself with people you truly know – and the digital age has made it ten times as difficult to vet people.
However, I know now a simple truth: I will never be made a victim again by those who value exploitation of power on social media, and I will always fight for myself. Your condition is not made up of rules or guidelines, but by the moral compass and goals you set for yourself. Do not let anyone take away your self-worth.
Make your own decision when it comes to your social media followings, but have caution.
Katie O’Leary lives in Los Angeles. She has CRPS (from a sports injury in college), knows the entertainment industry well and is a frequent contributor to the National Pain Report.