Recently I’ve made the switch to Mastodon from Twitter/X, but even when I was on the social media platform formerly known as Twitter, I noticed that the hashtag fibromyalgia came up a lot less than certain other conditions. In fact, even when things were being discussed which directly impacted fibromyalgia or expanded upon the symptoms we experience, that hashtag, and indeed any mention of the condition, was nowhere to be found.

I believe this has to do with the stigma fibromyalgia carries within the medical community. Other conditions also carry a stigma, but as more is being learned and more research dollars are pouring in, the biological markers and possible causes of these conditions are being explored. It’s no longer “all in your head”. However, fibromyalgia is still a syndrome, meaning there’s no specific underlying disease process that we know about yet. And, it’s a diagnosis of exclusion. That means what you get a diagnosis of fibromyalgia when all else is ruled out (or when your doctor simply wants to dismiss you).

The lack of advocacy could also be due to the fact that the fibromyalgia community appears fragmented. Where many conditions have one main hashtag, often one that is designed to convey the issues surrounding the concern (I’m thinking of #MillionsMissing for the ME/CFS community), there isn’t a single rallying cry for fibromyalgia. To compound this, so many of us are told we have to just “live with it” so we don’t believe support or community is available.

When I searched #fibromyalgia on Mastodon, I was surprised to see that most of the posts that I saw came from me. There were a few other fibromyalgia posts, but for the most part the hashtag simply isn’t popular over on Mastodon. It could be because the platform is new. It also could be because those of us with fibro often don’t have the energy to figure out a new social media platform. I know if I weren’t into tech and wanting to host my own instance, I’m not sure I would have dove in.

But it leaves me to wonder where is the advocacy around fibromyalgia on social media and how can we help to boost the signal?