Navigating the Online World of Axial Spondyloarthritis
Like so many other places online, the axial spondyloarthritis community has become an increasingly polarized place to inhabit in recent years.
I was so thankful to discover an assortment of forums and social media groups a decade ago when I first became aware of my diagnosis. These were places where I met wonderful people, safely asked questions and learned much of what I needed to know to live with this new-found condition.
New groups and new preferences
Over the years these original groups have swelled in size and hundreds of others emerged, branching out into specific user groups defined by gender, location, or a particular approach to managing AS.
Even if the “about” section doesn’t give it away, I don’t need to spend much time in any of these groups to discover what I can and can’t talk about.
There are groups so focussed on conventional medicine that it’s against the rules to talk about most forms of lifestyle change. Then there are the natural health pages where it’s not ok to talk about the medication you’re on.
As someone who relies on a balance between the two worlds, it’s sometimes been hard to know where I fit.
I’ve spent a fair bit of time lurking in the background of some groups
I cringe when I see someone chased out for excitedly sharing something that has worked for them. I also feel concern when I see potentially harmful advice being dispensed (usually around medication or dietary extremes).
Like everywhere online, it’s become important for me to learn new skills as I navigate the AS community. I’ve tried a new approach in the past few years and have been able to cultivate an online experience for myself that better supports my wellbeing and need for connection than it once did.
One strategy I’ve applied is to judge any space I enter online by the tone of its leaders. This might be official admins or moderators, or simply the people who post frequently and take on an informal leadership role within the community. If the majority of comments made by these people (including the “about” information) appear to be kind, supportive and empathetic, then I know that’s a place I want to inhabit.
Probably the most telling indication I look for is how the leaders deal with rule-breaking, conflict and negativity within the community. If this is done with a spirit of resolution and fairness then this again lets me know this is the place for me.
Some additional good signs
Finally, some other green flags for me within online communities include a sense of warmth, humor, and the sharing of useful information. And while I totally appreciate the bad days we all have and the need to vent about them, I don’t spend too much of my time online in groups where this is the dominant theme.
One of the best examples I have found for supportive, balanced content with great moderators are the AnkylosingSpondylitis.net and AxialSpondyloarthitis.net Facebookpages and Instagram accounts. Comments and questions are always dealt with in a professional and empathetic way that really helps people to feel heard and valued. I’m really glad to be part of these communities and have learned a lot from what is shared.
Aside from all this, I can’t overlook my own responsibility as a member of the AS community online. I feel it’s my job to be a supportive contributor wherever possible, to share valuable learnings and help raise awareness. I’ve gained so much from this world, it’s only right that I should find ways to give something back.
Which period are you currently in?