SI Joint Cyber Relief :: the beauty and peril of virtual support

Having a degree in rhetoric, there’s probably nothing I hate more than thinking I may have miscommunicated. Well, there may be one thing I hate more: the possibility that I may have hurt people I care about by miscommunicating. Let me explain.

 

Once upon a time I was sitting alone with all of my fears and angst and worry about the fact that I had an SI Joint problem that no one seemed to understand. Then I found a group of people on Facebook who were in the exact same predicament, and they had gathered to help each other. I cannot tell you how incredibly life-changing that was for me. I joined several SIJD groups and scoured the posts, soaking up any information I could get about new treatments, listening to people’s stories, and asking questions of those who seemed to be making headway. There were so many kind and helpful people who were willing to message back and forth with me, listen to my own unique situation, and offer encouragement and hope. I remember thinking, “I am so incredibly grateful for people who are willing to take the time to talk to me!”

 

If you follow my blog you know that this all led to my having surgery in Montana a few weeks ago, and that I’m doing really well. There were a handful of people who were instrumental in that turn of events, and I now count them as friends, even though we’ve never met face to face. I owe them a great debt, and continue to try and keep in touch. They have inspired me to pay it forward, which is a great deal of the reason I started this blog.

 

But in my last post, I closed by saying that I was taking a short break from the Facebook groups. Here’s some of the text:

 

I wouldn’t be writing this blog if it weren’t for Facebook, because I learned about my surgeon and his particular fixation method in a group for people with SI Joint Dysfunction. It has been a godsend. But there are so many strong opinions, so many (unqualified) people throwing around information, ideas about what is and isn’t good to do, what this or that means… I just had to turn the volume down while I focus on my own rehabilitation. As I said in my last post, sometimes you just need to listen more to yourself.

 

The next morning I woke up to a message from one of the key people who helped me through a lot of my surgery journey, and she thought I was shunning the Facebook groups and all the people in them. Including her. Nothing could be further from the truth! We got it all cleared up but it compelled me to write about something I’ve wanted to for some time: navigating the sea of information, opinions and personalities that you’ll come across on Facebook. If I were asked to offer some advice or guidance to anyone looking for medical answers in online forums or groups, this would be my number one recommendation:

 

Dive in, but be careful who—and what—you’re listening to.

 

I’ve gotten something out of every single SIJD Facebook group I’ve been a part of. The admins are volunteers who graciously oversee a large forum where people can trade ideas and information. But they don’t have control over everything everyone says. They don’t claim to be experts on everything. They are hosting a large virtual gathering that’s attended by people from all over the world. So it’s not surprising that sometimes folks with very strong ideas show up and try to dominate the conversations. That is what I was referring to when I said I needed to take a break from the Facebook groups.

 

I’d like to offer a few thoughts about navigating the Facebook banter about our illness. Take what’s helpful and leave the rest.

 

  1. Keep an open mind, but don’t rush to judgment about what someone else’s opinions or experiences mean for you.  An example: when Suzy Q from Interior, South Dakota, (Population 94) says that pain management is your only real option, consider this: who is Suzy Q? What qualifies her to say this? Is she just repeating what a doctor told her? It’s easy to let the Suzy Q’s of the world confirm your worst fears. Read peoples’ opinions but don’t automatically swallow them as gospel truth. Do the research. If you want to ask her why she believes that, by all means do so. But sometimes you have to let proclamations like that just roll off like water off a duck’s back. Suzy Q may mean well, but she doesn’t get to be the arbiter and decider of what’s true for you or anyone else. Beware of broad, sweeping pronouncements: Surgery is a huge mistake! Injections will only make you worse! Yoga is horrible for people with SIJD! Prolotherapy really works! You get the idea. Here’s the truth: surgery is a huge mistake for some people. Injections make some people worse. Yoga is a bad idea for some people who have SIJD. And prolotherapy works for some people. (I am not one of them. It was a horrible experience for me.) The point is this: it’s your job and yours alone to figure out whether or not these things are a good bet for you.

 

I think we’d all fare better in these discussions if we’d eliminate two words from our vocabulary: always and never.

 

I’ll say it again. Beware of rigid pronouncements.

 

  1. Just because someone is a “professional” doesn’t mean they know more about what you need than you do. There are some groups where people who work in the healthcare industry join the conversation and offer their professional opinion. And that has been immensely helpful to me in some cases. I found the neurosurgeon that I eventually went to see in Chicago because he was participating in some of the Facebook conversations. He was humble, never dogmatic or heavy handed, and careful not to try and diagnose anyone over the Internet. He just shared his own opinions and experiences, and then let others draw from that what they needed to. There are also practitioners who challenge peoples’ ideas but do it respectfully. Kindly. Politely. However, there are also a few people I’ve encountered who think they know what is best for everyone. EVERYONE. Instead of listening to peoples’ stories and concerns, they are poised to shoot down anything that doesn’t line up with their philosophy, and they often talk down to folks. It borders on bullying. And here’s the sad thing: there might be some valuable truth in what they’re saying. But because they offer their ideas as the truth, for every person, in every situation, we can’t hear them. Don’t let anyone online, professional or not, tell you that they absolutely know what you should do, especially when they don’t have the first clue what your story is. That’s not only ridiculous, it’s reckless. I am suspicious of anyone who will start dishing out ideas and solutions without any attempt to listen to and understand the person they’re preaching to. There is no one-size-fits-all solution to SIJD. Period.

 

  1. When you’re in these groups, remember that there are a lot of hurting people (mentally and physically) in your midst. Sometimes people just need to vent, and these groups are usually a safe place to do that. On some days, when you’re doing well, you can perhaps offer a listening ear and some compassion. But on bad days, when you’re really hurting and feeling hopeless, maybe it’s best for you to not be a part of the conversation. It doesn’t mean you don’t care. It means sometimes you have to put your own needs first. Only you can decide when to engage and when to detach.

 

  1. Keep in mind that sometimes things sink in by osmosis. Subliminal messages can and do affect our beliefs and our actions. Most people in these groups aren’t out to convince you of one thing or another, but their ideas can sometimes hinder rather than help you… without your even being aware of it. That is why I decided to take a break from the Facebook world for a bit. I was perusing the groups several times a day, reading every post and following several trains of thought. One particular post was talking about how SI joint fusions didn’t ultimately work if you have lumbar facet or minor disc/arthritic issues. Does that sound like a sweeping, blanket absolute? That’s because it is. Again: who is saying this? Where did they get this information? Did they conduct a study? Are they certain that not even one person with lumbar issues has been helped by an SI joint fusion? Of course they’re not. But they’re not thinking about the audacity of their claim.

 

Joe Blow from Idaho doesn’t know. But he’ll still sling authoritarian absolutes around Facebook. You don’t have to listen to them. Sometimes you just have to switch the volume off.

 

  1. Try to enter in to online conversations with a hefty dose of grace. It’s super easy to misunderstand someone’s intentions online. People are typing responses on their phones. Or they’re at the computer but can’t sit for long. They may have kids screaming in the background or they’re in a doctor’s waiting room and their response gets cut short because their name is called. In other words, these are usually not polished, well-crafted responses. That’s just not the nature of Facebook!

 

Last summer I interviewed Brené Brown, and something she said has really stuck with me:

 

Go ahead and assume that most people have good intentions.

 

She wasn’t saying that all people do, but that quite often we make up narratives in our own heads about what someone else is insinuating. I am guilty of this. I think when you’re desperate for answers and you’ve been discounted over and over and have been passed around a medical system that has largely failed you, it’s easy to be a little sensitive or quick-tempered. It’s easy to rush to judgment. We are tired. I highly recommend you check out my conversation with Brené Brown because it’s a quick read and I think it’s so relevant to this situation.

 

I’ll wrap it up this way: trust yourself. Be considerate of everyone, but choose your confidantes wisely. Weigh what you’re hearing before you accept it as truth. Take a break from the online support groups when you need to. And above all, be kind to yourself and others. We’re all doing the best we can.