When I was first diagnosed with Fibromyalgia in December 2009, I really didn’t know all that much about it. I had been in some degree of pain for many years, just not anything like this.
Being the research junkie that I am, I turned to the Internet to learn more about my newest challenge.
I was relatively new to Facebook at the time, but I did have one friend who had fibromyalgia and she pointed me in the direction of a support group.
I have never really minced words. I have probably occasionally overshared more than others. I always took the view of “this is who I am, either you like it or you don’t need to be a part of my life.” I found that more of my old friends stayed rather than left.
Of course, there were a few who automatically assumed I was a drug addict just because I was on pain medication.
You’ve met the type. They’re the ones who always say “if you just throw away your pills and go to the gym, your pain will go away and you will be just fine.”
I’ll get right on that.
No amount of reasoning will change their minds.
Believe me, I tried. I told my side. Some listened and stuck around.
Those who were completely convinced they were right were the first to be blocked.
Don’t need them and don’t miss them.
But that was 10 years ago and every single one of them is still out of my life. Realistically I discovered more supportive people than these set-in-their-ways judgmentally stubborn idiots.
Their loss. I’m awesome!
I then decided that I needed to connect with others suffering from my same degree of pain. I needed to immerse myself in the environment of others who actually understood what I was going through. I tentatively joined a couple of groups.
I should have just lurked first instead of just jumping right in.
I might have even been considered to be a bit naïve at that point. I figured that in a support group with other chronic pain people that I could really vent. That people would understand. I quickly learned a few things…
The larger groups usually have a few things in common:
- There are the cliques who are set in their ways and don’t like big mouthed newbies who come in and want to do more than look at pretty memes about being strong and in pain. You know, the ones like me who have something to say.
- Usually rules outlawing swear words within the comments. I think I was thrown out of one group for that one a day.
- The surprising one was a large number of fakers. They claimed to have our symptoms. They claimed to share our diseases and conditions. They had a condition alright, a mental one.
I became wary when I realized that being the new kid in an established group isn’t always a good thing. I was made aware of backstabbers – in our own community – who decided that I wasn’t who I seemed. I must be on other kinds of drugs.
Just for being me. Just for needing to be heard
Suddenly, this backstabbing disease spread to online friends who I had known for years. It got ugly.
I unfriended 137 people in one day. The kind who say “you say that if I spent a day in your shoes, I wouldn’t make it. I would find a way. Stop whining”
All because I posted a meme for fibromyalgia awareness day. Seriously.
I had known some for several years.
About a dozen came back later. I had been wrong. They are valued friends now.
Learning in my Fifties that life is still like Junior High.
And every single person doing the bullying did it for their own purposes. Just to have something to talk about.
But something amazing happened too. I found support where I didn’t see it coming. First one reached out from a smaller group. Then another.
There were tentative Skype calls.
My tribe had found me. They have become the people who I will fight for forever more.
Closer than sisters. On the other side of the country, but one of the few. One of the good ones.
Bottom line: there is good to be found on Social Media. There are some fantastic support groups there.
It feels good to talk to those who can hurt with us. Who when we are having a really high pain day don’t brush us off.
We still need to be heard publicly, but at the same time, maybe what we need is to work more on bringing the quiet ones to the forefront. Give them their voices too.
Maybe we need to grow our tribe before we can truly be heard.