Sunday, December 30, 2012

The Cat Has Got My Tongue

Talking about having FM or any chronic illness is hard.  We do not want to put our pride aside and allow others to see what we have become.  We hate pity.  We worry that people will think we're making it all up, that they will get tired of listening to us.  It is scary to think that no matter how much we try to explain what we're going through, nobody will understand.  Especially those closest to us; the people we need most to understand.

Many of us have been taught since we could walk and talk to be strong, self-sufficient, independant.  We have been taught to suffer through the hard times with our chin up, our shoulders back and most of all - silently.  Talk to people about physical, emotional and mental pain?  Absolutely not.  Talk about what hurts us on any level?  Never.  We were taught those things should be handled privately or even ignored.  Don't cry, get back up and brush yourself off, keep putting one foot in front of the other, it will get better.

Life for people who have Fibromyalgia rarely gets better.  We have flares that bring us to our knees and then maybe they go away and we get our little bit of 'normal' time.  We have a good day and in our crazy happiness, we run out and do all of the things we havn't been able to for a long time.  And then.. we pay for it, for a day or a few days afterwards.  It's like our body and mind says to us, "I hope you enjoyed the spring cleaning, the visits with your friends, the walk you took and that big meal you made for your family yesterday because you won't be doing that again for ohhhh.. another few months.  Hahaha.  Gotcha."

But back to communicating what our lives are like with this wretched illness.  Do you ever stand in front of the mirror after a hot shower or bath that you pray will help ease the agony and study your face, your eyes and see Fibromyalgia lurking there?  I do.  I can see it in the hazed color of my eyes.  No longer bright, sparkling and full of life.  The once beautiful golden brown color now reflects drugs and pain.  I can see it in the lines of pain permanently etched around my eyes, mouth, on my brow.  I can see it in the paleness of my skin, the shadows under my eyes.

I wonder if others can see it too and I don't want them to.  So, I stay in the house, I become a recluse to keep from seeing the pity reflected in their eyes.  I know what they are thinking - my friends, extended family.  "She used to be so vibrant, energetic and outgoing.  Look at her now.. she's aged ten years, poor thing." 

I can see them struggling with what to say to me.  They wonder if they should bring it up or not.  How I look, the fact that they havn't seen me in too long.  They are awkward and uncomfortable with me, not wanting to say the wrong thing.  Having Fibromayalgia or other chronic, debilitating illnesses is much like having cancer.  Only you don't die from it.  The communication is often times the same too.  When someone tells you they have cancer, you struggle with a response.  You know that nothing you say is good enough.  I know they feel the same with me, with this illness.

When we are asked, "How are you?", how do we answer that?  Based on how I was raised, to be strong, keep things private, my standard answer is - "I'm fine."  But I'm not fine at all.  I don't know that they can handle the truth because sometimes, it even shocks me.  I don't know that they really want complete honesty because human nature demands that we say or do something to make the other person feel better.  The best they can do is say, "I'm sorry."  The worst they can do is say, "I understand."  No, you really do not unless you have a chronic illness and I'm really glad that you don't, and that you don't understand at all.

We try to hide our illness so that we don't have to face all of that.  We push ourselves mercilessly in an effort to hide it, to be what we were raised to be - worthwhile as judged by society. We push ourselves to be the rock that our family needs us to be. 

It is hardest to communicate our illness with our spouses, parents, siblings, children and grandchildren.  Those we love the most.  We feel as if we are laying a burden on their shoulders.  We feel they have every right to a healthy person to share their lives with and we no longer are.  We do not want to change their lives to fit our needs as a victim of Fibromyalgia.  We have pride with them too - desperately needing to be everything we once were to them.  We fear them getting tired of living with our illness.

As hard as communicating chronic illness and how it affects us on every level - physical, mental, emotional - we must.  Our family and friends, those that love us, deserve to know what is happening through every stage of this.  They cannot understand if we do not talk.  They cannot try to help if they don't know how. 

Whether you want to face it or not, they are seeing the effects on us.  They may be confused.  They worry and they are frightened.  Only we can ease that for them with a lot of discussion.  By explaining things, we ease those concerns and we educate them on how to have a better quality of life with us.  We must get past how we were raised, our pride and reach out to them so they can hold our hand.  We must quit apologizing for ourselves, feeling guilt because it is useless.  This is our life and those that love us.. it is their life now too.  We need them.  And they need us, in any form they can get us.