When Support Groups aren’t Supportive

When the anesthesiologist was running through the risks of an epidural, he accidentally said there was a 1 in 1000 risk of paralysis. He quickly corrected himself and said it was 1 in 100,000 (I think, it was many sleepless nights ago) and I said that was good — we weren’t doing too well with the 1 in 1000 odds. After all, I was being induced for the rare pregnancy complication, intrahepatic cholestasis, which happens in 1 in 1000 pregnancies. And my daughter was born with clubfeet, a common congenital issue happening in 1 in 1000 kids. 

Yup. Same stat. Very different semantic descriptors. 

Ah yes, it’s all about context. A woman who is pregnant is more likely to have gestational diabetes (3-20 of 100), pre-eclampsia (7 of 100), placenta previa (1 in 200) or many other issues than ICP. 

Considering you are building a whole human body from scratch, there are countless things that could go wrong, so conditions like clubfoot, Down syndrome (1 in 800), cleft lip and cleft palate (1 in 700) are “common.” 

It’s all about looking at stats in context. 

Now I pulled these stats from various different internet sites, with great disparity between some stats for certain conditions. But that comes as no surprise. I hope. A little bit of critical thinking goes a long way when looking at internet sources. 

But let’s face it, between the need for fact checking sites, the recent discussions of the influence of fake news on social media and, well, the recent US election, critical thinking is lacking.

It’s for that reason that I tend to stay away from Facebook groups who seek to provide a community rather than a service (BST groups keep my middle of the night feeding sessions interesting). But I also recognize there is a purpose. 

For example, while clubfoot may be “common” I know no one other than my brother-in-law who underwent treatment for clubfoot. In our case, we knew our daughter had bilateral clubfoot about halfway through the pregnancy, but were only told the course of treatment by a medical professional when she was 4 weeks old, the day the treatment started, the internet was our best friend. And so I did that thing I had shuddered at doing before. I joined a facebook support group for Canadian parents of children with clubfoot. And I turned off push notifications, and I unfollowed it. 

And then I ignored the group again until the night before the first appointment when I wanted to know how long the appointment might take. And I made the mistake of posting. And I made the mistake of answering which hospital and which doctor we would be seeing. 

Suddenly, someone was telling me to go get a second opinion elsewhere because it was a bad hospital and we were seeing a bad doctor. 

Gulp

It wasn’t until she tagged two people in her response that I realized the context of her comment. She was not from Winnipeg. She had never set foot in the hospital, or met the doctor. As evidenced by the screen shots she also attached, she had merely searched the group for “Winnipeg” and read two posts in isolation. 

So I read the two posts. And I did my own search of the group for the two people she had referenced and read ALL of their posts. And then read the PM that one of them sent me after getting a notification they were tagged in a comment. And with all this context, I was able to deduce that this hospital and this doctor were likely just fine. 

If clubfoot is quite common, and with there being only one hospital in the city who treats it, the fact that there are so few stories bodes well. After all, how many people voluntarily go into groups and forums to report that something went as expected? Significantly less frequently than someone who feels they have been wronged. Yes, 100% of the comments voiced doubt about the doctor. But 100% continued seeing this doctor and 100% realized their concerns were unfounded. 

Support groups often are filled with armchair doctors who know more than a trained physician. Of course they are able to offer a diagnosis and course of treatment way faster: they look at the issue in isolation. “The big toe is pointing down! It must be a complex case of clubfoot! How dare your doctor say it’s not! He’s crap, find a new one” But they don’t ask if the child is pointing the toe down, or to see the same foot from a different angle in case it’s just a perspective issue. “The cast slipped! Your doctor is crap, find a new one!” But they don’t ask whether the child was fighting the casting, or whether the cast was compromised by a large diaper leak. 

We all turn to the internet out of fear and ignorance, but sadly, without the benefit of critical thought and context, all we get is more fear and more ignorance. 

Advertisements
Categories: The new identity | 2 Comments

Post navigation

2 thoughts on “When Support Groups aren’t Supportive

  1. The internet is so hard for me. I remember when I was pregnant and I was one of my only friends at the time who was pregnant and I wanted to find some support and I joined a bunch of “groups” and found they hurt more than helped, especially after my GD diagnosis. And again, when I had questions about things when Ollie was newborn, same thing, I tried to find some support and just didn’t. It often lead to more questions than answers.

    BUT the internet has been good for me in that I have met most, if not all of my best adult friends on the internet thanks to blogging. I have a bad history with friendship and found myself pretty closed off as an adult, but of course as a blogger, put my entire self out there on my blog so that when I’ve met some other bloggers in person, they already know me and there is a huge comfort level there. I wouldn’t have Jen or the two birds or YOU without the internet and that’s huge. But I realize blogging is a different world than FB or mom groups or anything like that.

    FWIW, my uncle is an award winning pediatrician. He’s also Ollie’s pediatrician. I’d be more than happy to ask his opinion anytime you need a second opinion or even just want something clarified. And I don’t know what you’re going through personally, but I’m always here if you want to talk.

    TL:DR – the internet is good and bad, I’m here for you, great post. ❤

    • Exactly! When the focus is on people and relationships, the advice and support is so much more comprehensive! I’m very glad to have internet friends who may not have been through what we’re going through but who at least care about us, like you!!
      Thanks for the offer! For now we’re good. Our orthopaedic surgeon is amazing and always has a new med student every week, so is very thorough in explaining what he’s doing and why. It’s to the point where I’ve heard it often enough I could explain it to the next med student t! Our pediatrician, however, is on mat leave so we’ll be seeing a general practicianer for the next two visits (doctors are self-employed here, so she isn’t able to take a full year; I can’t imagine spending my day with everyone else’s baby when I would have such a young one at home!!) so if I have any questions or concerns with those doctors, I may take you up on that.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Create a free website or blog at WordPress.com.

%d bloggers like this: