Thursday, July 8, 2010

Describing Fibromyalgia

I've done my research. But it's confusing. No one can agree wholeheartedly about Fibro and how to describe it.

Is it muskoskeltal? Is it neurological? Is it joints... muscles... nerves? Is it sharp, tingling, radiating, shooting, or stabbing pain? Is it constant all over for every Fibro person? Does it come and go?

Is it MIND-NUMBINGLY FRUSTRATING to try to describe it to people?

That one can be answered with a definite YES!!!

Yesterday as I was explaining to a coworker that it's worst for me in my nerves {like the tips of my fingers and the top of my head}, I realized... well, that's not entirely accurate. But I wasn't sure how to elaborate fully, nor did I want to bore him completely or confuse him utterly. Gah!

It's easy for us to get confused & overwhelmed. So how do we attempt to explain it to other people?

I try the best I can, usually just trying to slightly explain how I'm really feeling in that moment, despite that it doesn't give them a true, big picture of how I feel day in and day out. I don't want to overwhelm people that are just being nice or friendly. Those who really want to know the details ask and push for honest, longer responses. You can normally readily pick those people out of the crowd. Are they listening intently? Are they able to empathize through someone else they know who is struggling with illness or pain? Or are they just looking for a quick, polite answer?

This has been a struggle for me. It took me a long time to even get to a place of wanting to tell anyone outside closest family members or very close friends. It was a long, drawn-out process to get the information out to everyone I knew personally. Then after a while I lost track of who knew and who didn't! So as questions started to be asked about the specifics, every time I thought I knew an answer, I found myself going back to the drawing board. I'd change my answer sometimes and go back and tell those people something else. I'd often doubt my answers and keep it very minimal. But always, I could tell the ones who wanted to know everything I knew. They wanted the ins and outs, the ups and downs, the ways specifically to pray for me daily, and they really, truly cared.

But now that I'm so far along in the process, I struggle just with how much to share. How to describe it. How to gauge how much they really want to know. How much do they really care?

How much are they just trying to be polite? How much are people who care not sure how to show it, not asking for fear it'll bring up a topic they think I don't want to talk about? Or they don't ask me because they are afraid of not knowing how to respond?

It's uncertain. There's no right or wrong answers here. The reality is... every part of Fibromyalgia is difficult. Describing it and trying to tell people about it is no different. The only aspect of living with Fibromyalgia that is good is the community of people you get to know who struggle with it too. We are our own little subculture of people. We know. We get it. We care. We're here even when we're in too much pain to respond. We're suffering. Learning. Growing. Sharing. Exploring the reality of our new selves. Discovering each day what we are and are no longer capable of. We support each other when we feel like the world all around us is falling apart. As much as all of this stinks {again, realize I'm at a place where I'm thankful for it and have gotten past feeling awful about it every day... but the sheer reality is that it still really stinks and I wish I could make it go away no matter how thankful for it I've learned to be}... it's been a blessing to get to know other people in the same boat.

To those of you who are listening and care, I appreciate you. To my Fibro community, thank you. I couldn't do this without you. All my best to each of you.


Patrina's Pencil said...

Well said, Rochelle - I appreciate you too! Thanks for sharing!

Patrina <")>><

Dogmom Diva said...

Rochelle, you just posted what I think of all the time. I never know how to explain this. Like having the flu? how do I explain how much my legs and feet hurt, and how stiff I get? Or the headaches? Its tough..we are in this together, girl!


Lynda Young said...

Hearing you. While I may not be able to fully understand what you are going through, I can very much relate to the difficulty of having to explain something impossible to explain.

rlee8235 said...

When they say that Fibromyalgia is in our head, maybe it's true. I think we're hardwired differently and something happens to trip the switch. I think it's with Substance P in the spine and I think our brains don't perceive the pain signals correctly.

I don't understand why my feet and hands hurt so much. This is an unbelievable disease that steals so much from us.

Yep......we are all in this together!!

Sarakastic said...

I'm glad I'm not the only one who has trouble telling other people about it. Also a big congrats on your anniversary!