Exercising Caution with Online Support Groups

Exercising Caution with Online Support Groups

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.

Katelyn O’Leary

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.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Katie O’Leary

newest oldest
Notify of
Sharon Anderson

I you stated it absolutely exact. I have never had a person write it out so trueful. Myself and many others faced exactly what you speak of on a large, popular, extremely well known support site. The site serves into the thousands. It also supports a implanted device many had one that went terribly wrong. That caused permanent damage. I am one. We all were not welcome and post were deletted if we spoke truth. Our post were heavily reviewed so if they decided to block it. We all were people that actually had one. We’re fairly healthy except the desease it was put in for when it malfunctioned. I could relate to every word you said. I want to thank you for your post. I admire honesty in people and those who speak out. I am advocating now for my brother like I have others. He has joined the ranks of chronic pain patients that committed suicide. And the Veterans that do. This is the only group I belong to now. He did also and he helped a lot of people like I did. And obviously you have. Thank you, Sharon Anderson

BarbaraR

Thank you so much for writing this article! I am currently struggling with this issue. I am very isolated & it is tempting to try to find friends & support online but one is unable to truly know who is out there. I did find a good friend in my town through a local chronic pain site where people were arguing & putting each other down, I had sent her a PM due to how she was being treated on the site & we’ve since become friends in person. I was fortunate with that instance but it’s so easy to overshare in online groups w/o any real awareness of who we are communicating with.

Kelley

David Oliver Newell

Look up:

Operation Starburst

& Dont Punish Pain Rally

Much Love
Kelley Thornton

ElizabethR

Thank you for this timely cautionary tale. I rarely use Facebook (especially since the data breaches came to light) or other social media. NPF is one of the few online advocacy groups I participate in–others are related to finding lost cats and replacing the current occupant of the Oval Office. I’m not much of a techie; at 82, I did not grow up with technology like the Millennials have (heck, I learned to type on an Underwood manual typewriter!). I try to use caution but in today’s world there’s probably no such thing as being too careful on the internet.

Positive Thinking is over rated. We need to understand our limitations, to make use of whatever freedom we actually do have. Scientology and similar cults pretend that we can all evolve superhuman powers if we would only pay the cult enough money to learn their magical recipe for the perfect way to think. It’s complete nonsense.

A real friend wants to know your present reality.

If you’re out of spoons today and need rest, a real friend will accept that and encourage you to get some more rest. We’re better off to know a reality that is disappointing, than to keep hearing lies that were meant to sound encouraging but are not reliable.

Yes, Katelyn, you discovered a truth. No real friends want to hush you up into silence.

Amen to that! I learned it the hard way!

Good advice.
Since I’m already subscribed,
I will leave this un-thread connected question, as I don’t think I can start my own.

Why is it that there are no class-action suits against medical care institutions
related to their pain medicine activities?

For me, and many others, one of two mistakes have been made as regards the provision of opioids:
Either :
1. They never should have provided them in the first place on a chronic basis;
or,
2. They have are committing an error in depriving me of a medicament which has been used without negative consequence for over 5 years, which I have become “DEPENDENT”
upon for attenuating neurological pain arising from a t-10 operation which has “cross wired” some nerves.

The medical care folks are whining that they were mislead b y pharmacist claims that the “new products” would not cause addiction, and therefore it ain’;t their fault.

But I did not “hire them” back then to generate erroneous conclusions, or base conclusions on other’s input. Their excuses do not exonerate them from liability.

“Professional Liability” is a subject I have passing familiarity with, and I depended on their expertise and professionalism. They held themselves out as experts, and have cause significant suffering.

Why are there no class action lawsuits.??

Sincerely,

David Newell

====================

I know this is not the right place to post it.

Move it, junk it, or advise me what action to take to elicit a response, please.

Sharon E Murray

Katelyn,
I hear you. I have a group who daily send me messages to contribute to the site. I knew right away that kind of motivation comes from a computer not a human. Nobody can remember who has posted on the site day in and day out. I would share only if I want not when prompted by the program they are running.
For so many looking for information only professional info should be given such as a referral to WebMD, FDA, CDC, HHS, people need to understand their own situation and get info from their own doctor she or he can also refer people to the right site. Spine Universe can also be a good reference point. See my issues are muscular skeletel, osteoarthritis.

Kris Aaron

Whenever I post information about an issue I make sure to include reference links to the source of the information! This is absolutely essential when discussing medical issues like chronic pain — we’ve seen how misleading and even outright incorrect information can negatively affect not just thousands but millions of people!
For example, Andrew Kolodny is a physician specializing in addiction issues with no expertise whatsoever in treating chronic pain. He also owned a highly profitable chain of unregulated addiction “treatment” facilities and is the head of PROP — Physicians for Responsible Opioid Prescribing. Kolodny talked his way onto the Center for Disease Control’s committee that recommended opioid prescriptions be sharply reduced for EVERYONE, no matter how severe their pain (http://www.pharmaciststeve.com/?s=Andrew+Kolodny+and+CDC).
The CDC was willing to listen to Kolodny and other unqualified “experts” but were uninterested in hearing from pain specialists or pain patients. How much faith did the CDC have in their committee? Apparently, so much that they refused to release the names of members to the general public, information that was eventually revealed by an outside source (http://nationalpainreport.com/congress-questions-cdc-who-drafted-controversial-opioid-guidelines-8828780.html).
Posts involving rumors, “people are saying” and “it is known” are exciting to share, but when they’re fabricated out of whole cloth or misheard/misremembered, the consequences can be devastating.
I remember a great cartoon with two cats sitting at a computer and one says “On the internet, nobody knows you’re a cat!” We have no idea who is posting or moderating groups, and no way to verify their comments except through provided links. Read with enthusiam, believe with discretion, and always verify verify verify!

KATHLEEN M KAISER

This is a good article that deals with a lot of the problems of Facebook groups. I get sick and tired of all the different rules. Some make sense while others are completely without basis. I was once kicked out of a pain group because I mentioned the word suicide. I was desperate and looking for someone to talk to but instead I was kicked off, deserted, etc. I had no other offenses so this was a “first time your ou”t sort of thing. While I know the administrators are not qualified to handle someone thinking of suicide there are better ways of handling this situation. For example the admin could have reported my post to Facebook (which is a general rule of all Facebook posts) or at the very least the admin could have PM me contact info for a suicide hotline and expressed a caring attitude. Instead I received a nasty PM stating that I was being removed from the site and then I was blocked from that person so I could not even rebuttal the action.

Donna Corley

Thank you for your article and bringing this to light.
I understand what you have gone through and have seen several groups like this, but not all are as you described, and many do help members. As an admin and advocate of Arachnoiditis, Tarlov Cyst Disease and CRPS, it isn’t easy managing any group when you are in pain yourself, but being an advocate and admin you have to be in it for the right reasons and that’s to help others, not make a name for yourself or be a glory hog. Yes I’ve seen my share of those also, and some have been very spiteful towards other groups. In our groups there are strict guidelines to protect the members period. The safety of our members come first above all else. We do not tolerate bullying, or any type of misconduct at all. That’s an automatic dismissal from group.
Many leaders of these groups are like you say, “to have an audience” and are in it for themselves. This is NOT how you run a group and surely NOT what it means to be an advocate!!
Im truly sorry you had to go through this. It’s heartbreaking to see this type of behavior from adults abusing people who are already suffering enough as it is.

Living with chronic pain diseases is hard and you can not always have a positive attitude. It is good to talk about your bad days. It can be a release of pent of sadness, anger, frustration, but having someone to share it with who truly understand and cares makes all the difference..

I wish you all the best and know you are not alone in this.. Sending gentle hugs to you.

What an excellent topic for discussion Katie. When Facebook, etc. came out I said no, not me. I’m a very private person as is. I never could see the point in having so many “friends” that were indeed complete strangers to where I would want to share my pictures not to mention facts of my life. I had people tease me. I even had one woman say, “How can I thank you for what you’ve done? You’re not on Facebook.” I couldn’t believe what I was hearing. She lived four doors down from me! I hear it’s a great way to keep in touch with your family verses using your phone to talk to them. A friend of mine had so much on her Facebook page in which she wanted to share with me. I was embarrassed for her. One such incident, she and her co-workers had given Indian names to one another. Somehow hers turned out to be tramp of course in a roundabout way. She thought it funny, I thought how disgraceful. It’s been a long time ago but since then I’ve heard employers don’t care one bit to look at one’s Facebook page. I suppose in the right situation they can be of help, then again there’s all these horror stories. Whether it’s the cool thing to do or not I refuse to let my little girl use Facebook or dating sites. Last year she told me her friend had secretly been making YouTube videos. I found that hard to swallow until sure enough, there they were! I told her the danger involved in such, she shared with her friend, I shared with her family and the videos stopped. They were harmless of course though imagine how many of the wrong people looked at them. We know it doesn’t take a rocket scientist to come and find you if they want to badly enough. On the flip side I’m truly thankful for the national pain report. I feel as though we can share our thoughts and feelings, without harm and humiliation. Take care Katie.

Maureen M.

Personally, Aside from NPR…I tend to stay away from Facebook and all social media of the kind.
Putting too much of my self out there is too scary for me in regard to the people out there who exploit others. I like to keep it real, keep it simple and with full trust…overall, it is less stress for me that way.

I agree, I used to go online everyday for hours to lend support and get support. The more time I spent reading about everyone’s illnesses it made me really depressed. It just hurt my heart, not knowing the damage it was actually doing to myself. Once the light bulb went off, I removed myself. I started walking and doing things around the house that I had neglected for months. I haven’t fully returned and most likely won’t. I have a few friends that I’m really close to, and hope to have them as friends for the rest of my life. But I will still check in from time to time. I do feel much better about my decision and believe I’m healthier for it. Take care my friends, care for others but don’t forget yourself in the mean time.

Well said.
Sadly there is far too much of what you mentioned taking place in online support and advocacy groups.