Thoughts about online communities
If you don’t read the XKCD comic, you should. XKCD Duty Calls
I’ve been a “netizen” since the early days of dial-up AOL. I probably shouldn’t admit that, since it reveals just how long I’ve been on the internet and thus how old I must be. For an introvert like me, the internet provides a lot of social interaction from arm’s length. This has upsides and drawbacks. One of the upsides that I see is that it provides people with access to support groups they might not have access to in real life for many reasons. Over the years I’ve been involved with many online bulletin boards, discussion groups, message boards, etc. I like being able to talk to people all over the country and/or world who have similar situations, hear their stories, and discuss our accomplishments and challenges. I’ve had support in this way for various health conditions I’ve struggled with, marriage, spirituality, parenting, and many more.
So it was entirely predictable that when I started thinking about weight loss surgery, I’d seek out some online communities for WLS. I found one right off the bat, had some very positive interactions with some of the board and WLS veterans, people who had surgery and had kept their weight off for a couple of years or more. I got exactly the support I needed, shared experiences from people who had been through the surgery I was contemplating, and lots of discussion about the insurance process, all of the appointments needed, the surgery process, and much more. I didn’t feel the need to go find another board because that one met my needs.
With my long history on the internet, I know that anywhere there are people, there are politics. When writing on the internet, you can’t convey body language or tone so it’s easy to misinterpret what someone is saying. People take offense easily, and cliques form. It’s the nature of a community. There are always people who annoy me online, and I pretty much just ignore them. Some people engage in online battles for a number of reasons, and it can get messy. But for the most part, people work it out and you just try not to step in the mess. The board I’d found seemed to have appropriate, mostly hands-off, moderation and the veterans were a great source of information and inspiration.
I was warned that the WLS boards are full of misinformation and not always the best support for newbies, but I have a medical background and am pretty good at weeding out bad information. I don’t have the time, energy, and access for in-person support groups, even though my surgeon offers them. I also offered my take on things as a registered nurse having done a lot of research into the procedure, because once you’re a nurse you just can’t help but educate people about medical issues.
As frequently happens, the board I was part of blew up with accusations of long-standing members bullying and terrorizing (yes, that’s the actual language that was used) new members after months of tension originating from new posters who were not interested in actually changing their relationships with food and their lifestyles. They seemed to want the surgery to be a magical fix for their weight, without requiring any change to the way they eat. The veterans of the board were marginalized and attacked for trying to provide sound advice and experience, and accused of bullying when they would not coddle people who seemed to be looking for absolution and/or permission for poor and even dangerous decisions.
I’m not posting this today to rally up rebellion or retaliation. I’m not going to name the board in question. I’m posting this because a few people interested in or who have had WLS read my blog and I want you all to keep a few things in mind about online support groups.
Support groups can be fantastic. They can also be detrimental, even dangerous. It’s up to you to carefully evaluate what you need and what you are getting from a group. No one is qualified to dispense medical advice in a support group. I as a registered nurse, can share some of my knowledge and research with you. But I cannot give you any medical advice. It’s not legal, and it’s not ethical. I don’t know you, I don’t know your medical conditions and history, and I don’t have your medical record and treatment plan to reference, nor do I have orders for you from your physician to implement with you. Even doctors and nurses can have incorrect or outdated information, too. But the lay people are only repeating what they have read or have been told. Even more specifically, they are repeating WHAT THEY UNDERSTAND about what they have read or have been told. As a nurse, I can tell you that a LOT of people don’t understand completely what they are told/taught by their medical professionals. Bottom line, take what they say, do your own research, come to your own conclusions, but for the love of all that’s holy, LISTEN to your doctor and your medical team. Unless they are incompetent, they are the final say in your treatment and recommendations. If they are incompetent, find another doctor/team.
Piggybacking onto that, recognize that every doctor and team out there has a slightly different plan and set of rules. There are still doctors out there who will tell you that you’ll damage your sleeve if you drink with a straw. That’s malarkey. The reality is that SOME patients swallow a lot of air when drinking with a straw, and it can cause a LOT of discomfort in a new sleeve and for some people it never stops. Those people will be miserable anytime they drink with a straw, forever. Most people will have no discomfort, or it will only last a few weeks. But air in the sleeve cannot damage it. Just like you can’t stretch or burst your sleeve by drinking too much liquid. You can make yourself miserable, but there isn’t enough pressure to damage the sleeve, liquid will either come back up or go right through. But you’ll have people online swearing that you’re going to kill yourself if you drink with a straw. Or drink carbonation or whatever. Because they were told that by their doctors. Or they misinterpreted a short-term restriction as a forever restriction. The variations include post-operative diet progression plans as well as weight-loss diet plans. Some programs preach very low carb, others are more moderate. The one thing they all have in common is that you have to change your relationship with food, and the sleeve is just a tool to help with that.
Some online boards are run as a profit venture. For WLS, they could be operating a store selling WLS vitamins or protein supplements and foods, or they could have a business that coordinates surgeries out of the country. This is not a bad thing, because those are needed services to the WLS community. What it can mean, however, is that the motivations for the way the board is run and moderated is not about providing support, it’s about profit.
Also, while it shouldn’t need to be said in this day and age, nothing you put on the internet is truly private. Don’t ever think that private messages are not accessible to other people, especially moderators/admins from the site you’re on. You’re trusting those people to preserve your privacy, and that’s a mistake.
I’m not telling you to stay away from support groups. In person, they’re usually moderated by a person from the surgical team who makes sure that the information is consistent with what that team teaches. Online, they can be a great outlet for people who don’t have access to an in-person group for whatever reason. But they should never replace your medical team in terms of advice about what is or is not allowed for you at a given stage pre- or post-op. And it’s easy for an online community to become an echo chamber, where dissenting opinions or criticism is not tolerated. If your online group coddles bad choices and reinforces them, it’s not going to help you in the long run. A good support group helps you recognize when you’re resisting the needed change and helps you keep to your plan to reach your goals. That often requires blunt critical feedback, and it’s not always easy to take. But it’s necessary. If you just want people to pat you on the back and tell you your poor choices are OK, stick to friends on Facebook or whatever.
Bottom line, don’t let any group, especially an online one, replace your own common sense or the advice of your medical team. Having people support you with a huge life change like WLS is a good thing. Just remember what it is, and what it is not.