Facing Fibromyalgia Together

Facing Fibromyalgia Together | Fibro Pulse @fibropulse (fibropulse.com) #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

The Problem: Isolation

Isolation. Feeling alone in your pain. Over and over again I’m hearing this echoed among fellow fibromyalgia sufferers:

Instagram screenshot isolation

On a long enough timeline, it’s something we all must grapple with, as people we once thought of as friends and confidants gradually fade away from our lives as they don’t know how to deal with our chronic pain and its associated limitations. Even those closest to us who have stuck with us through thick and thin (bless them!) can only understand so much of what we’re experiencing.

The idea of starting from scratch, of going out and meeting new people to begin friendships with, has its appeal. For one, if we’re upfront about our condition, they can either take us or leave us before becoming invested. It’s a bit more awkward when an old friend invites us to go hiking that 10 mile trail we used to do as teenagers, but now we just…can’t. However, often we just don’t have the energy to go out and socialize and face all of those unknowns among strangers either.

It’s an uncomfortable place to be. So we slip through the cracks, and the loneliness creeps in. Are we doomed to a life of isolation?

A Big Problem, But One Worth Discussing

I can’t stomach the thought of giving up all hope of connection. Humans are social creatures first and foremost, and we need each other. This article series is focused on that human side of fibromyalgia. Our video series covers a lot of really important topics from symptoms to treatments to related conditions, but this written series will focus more on the real, actual conversations going on throughout the web. We intend to collect some of the most important topics being discussed on Facebook, Reddit and elsewhere, give some context, and share our opinions. It’s an ongoing dialogue, and I hope these words inspire even more discussion and healthy debate about the really big issues affecting those of us with chronic pain.

Facing Fibromyalgia Together isolation | Fibro Pulse @fibropulse (fibropulse.com) #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

We’re listening to you. You can directly impact the course of the discussion. Find yourself slamming your fist in opposition to something written here? Thumping your foot in agreement? Seriously, let us know either way! We crave feedback if this project is to grow and expand and be the resource we know it has the potential to be. And don’t be afraid to share with us and the larger community some juicy chronic pain-related discussions, articles, or videos. We’d be happy to throw in our two cents.

Beyond the Blog

This articles series is just a starting point. When we say that Fibro Pulse is all about facing fibromyalgia together, we mean it. This is not just a one-directional affair of us beaming information to you and that being the end of it. For that matter, we’re not so narcissistic as to believe that we have all the answers – not even close! The collective knowledge of the whole community is far beyond anything we could put together ourselves.

For all that’s said of technology as a force of disconnection, we believe it has far greater potential to bring us together. Short of going around wearing a scarlet “F” on your head (which we do not recommend), you’re not going to know when you bump into a fellow spoonie in the real world. That’s the thing about invisible illness; it’s…invisible. And there’s only so many in your home town.

But by participating in online fibromyalgia and chronic pain communities, we can connect to millions of people who share our struggles in a tangible way. And we can join in from the comfort of our own home.

Facing Fibromyalgia Together isolation | Fibro Pulse @fibropulse (fibropulse.com) #fibromyalgia #fibro #chronicpain #chronicillness #spoonie #invisibleillness #chroniclife #spoonielife

Now Linda, you might be saying, haven’t these communities been around for years? I’m part of so many  fibro facebook groups I can’t keep them all straight! Well, yes, but how much meaningful discussion is currently possible through such channels? In our experience, the conversations in these forums are pretty surface level. Maybe it’s because your friends can see that you’re part of these groups (even if they’re “closed”) and so your messages there are not necessarily always going to be anonymous. Maybe it’s because it’s all text-based and things get buried really fast. And even though you might be able to read a person’s real name, it’s rare to form any sort of deeper, one-on-one bond with anyone. Whatever the reason, in my experience with these online communities, there’s something missing. They’re still too impersonal.

A Better Way

Technology has come a long way. With the advent of live streaming, we can talk to each other in real time. We can chit-chat, talk about the tough stuff, laugh, and cry together. We can look into each other’s eyes. If we wish, we can be anonymous and ask a very sensitive question. Or, we can be more public if that suits us better. The platform we are working on creating will integrate all of these technological capabilities in one central place, with the goal of truly building community. Chatting via text, voice, or video will be seamless whether you’re on mobile, tablet, or desktop. And hopefully we will get to know each other as real people – as friends – and not just as random strangers on the internet.

We know it’s an ambitious goal to beat back the loneliness and isolation that so often come with fibromyalgia. But if we all at least attempt to participate and give it an honest effort, it just may turn out to truly embody the Fibro Pulse vision of facing fibromyalgia together. We’re super excited to roll it out soon!

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