Have you ever read the comments to the NFA ( The National Fibromyalgia Association) on Facebook? Wow. It’s like the wailing wall of Fibromyalgia. They are just that painful to read.
For instance, the NFA posted an article about their National Fibromyalgia Awareness Day event (yes, I went, eventually I might comment; wonderful effort but I had some issues) last month. It was a very nice article about how the California State Fullerton kinesiology students volunteered at the event. The first comment on the article was a cry for help because the medications she was on weren’t helping.
Ouch. Been there. I mean, I’ve had meds that didn’t help, and some did serious damage. But the comment seemed to bring forth an avalanche of other comments along the same lines. It hurt to read them. These people were miserable and needed someone to listen to them! The NFA can’t or won’t reply so it just seems like a very sad situation.
I have Fibromyalgia. It hurts. And I’ve been around other people with chronic pain. It seems to me like there are two extreme ways of handling it in a social situation:
- Pretend like nothing is wrong and hide it from everybody or
- Tell everybody and anybody just how miserable you are all the time, repeatedly
Neither method really works for me.
When I first got a full-blown case of fibromyalgia I was a total basket case. I was so deep down miserable I thought I’d never see light. The anxiety and the depression that came with it were overwhelming. But there’s only so much you can say before people start avoiding asking “how are you doing?” So my standard answer became “Just peachy!”
I just don’t function well that way, though. I think the term for me is WYSIWYG (pronounced wizzy-wag). “What You See is What You Get” 
I know people that can be so much pain, pushing an eight out of ten on the scale, and still smile and laugh and act as though nothing is wrong. How do they do that?!! And would I want to? Is it the healthiest response? I don’t have that answer.
But I’ve learned to smile and can get away with it, as long as I don’t talk. The minute I open my mouth, ya’all will know that I hurt. It’s not like I’m proud of it, but if it’s on my mind, it’s in my mouth. I avoid dwelling on it. I shift positions, find something that doesn’t hurt, and change the subject. But if it’s there…you’ll know.
Like the family drama I’m going through now; not like I’m not going to say anything. It hurts. It’s my life too. I feel helpless and hopeless. I want to DO something. And I’ll eventually say something. But right now I can’t.
I can’t dwell on it because it will turn into a never-ending spiral down. So I change the subject. And I am the ultimate blond when it comes to changing subjects. I had a friend who used to say my “way from point A to point B was through the rest of the alphabet”. I said I could change the subject, that doesn’t necessarily mean I’ll stay in focus. See what I mean? Wayyy off point (again). It works!
Back on point: So is there a relative medium between pretending like you’re just peachy and bringing everyone else down with you? And what does it look like? What is the best way to deal with the situation?
Again, don’t have that answer.
I try not to be around other people if I’m having a flare or anxiety prone. That’s not always practical or possible, but I try. And if I’m already grumpy fugedaboudit!
You will be getting a couple of minutes worth of “my life sucks” and then I catch myself and shut up. That’s just how it happens. Thank goodness I’ve got some good friends who know when to distract me if I can’t do it myself. It’s not like I want to bring everyone down to my level. Honest.
On paper or online…the delete key is my friend. I need to bond with it a bit more often, I think. Then again, sometimes whole posts or whole comments get dumped. Or not. Sometimes I just let people have it. You ask; I answer. I wouldn’t say that it’s always the wisest choice… but I can’t be who I’m not and I can’t hide all the time. Everybody handles their pain, fatigue, anxiety (and so on and so forth!) in their own way. Sometimes, most times, it helps me just to get it out. Doesn’t necessarily add to the conversation though 
So the answer to the question “How do you deal with Fibromyalgia socially? I think the answer is another question. What do you want to accomplish? How’s that for a light bulb glimmering dimly overhead? You’re in a social situation, what is it that you are wanting to do? You have to keep that in mind. But that would require staying focused…
I try.
By the way, if this post seems a little cryptic to you, it’s because it’s kinda for me, and kinda for you.
In my FAQ I answer the question “Why do you blog?”. Because I want to remember! So this is a bit of a sticky note. When I’m in social situations…what exactly am I there to do? Do I want people to feel sorry for me? To feel my pain? Or do I want to interact with them, leave them feeling a little better, make them laugh, and in the process make myself feel better? I think it’s a worthy goal…
