A couple of my friends were surprised I did not post something for Fibromyalgia Awareness Day on Saturday, May 12.
Honestly I had intended to write something but frankly since it landed on a Saturday I was too busy to hold still long enough to say what I feel needs saying about fibromyalgia and awareness days.
I am going to couch my comments by saying I think there is a time and place for raising fibromyalgia awareness but as far as awareness days in general, I am not a fan.
I have been in the thick of this for a couple of years now and I have noticed May 12 really stresses fibro folks out.
Since I am a fibro folk, my Facebook account was cluttered with all sorts of awareness posters and heartfelt thoughts from people who have fibromyalgia in the days leading up to Saturday and by the time Saturday arrived there were a lot of pained-up people.
Perhaps it was merely a coincidence but I really do not think so. It was hard for me to stay on top of my own pain after reading for the 100th time that I should be in pain 365/24/7 so I am inclined to believe other people felt the same way too.
Most of the posts were a global plea for support and acceptance and while those are crucial elements to advancing fibromyalgia, I would like to twist that around a little bit by asking a few questions to us patients…
1. What steps can you take to increase your personal support and acceptance?
2. Are you making positive and relatively consistent progress toward living your life in spite of fibromyalgia?
3. Are you saying YES to life even though it might hurt a little bit?
I know so many people who say “I don’t have support” and I do know how it feels because when I started my fibro journey two and a half years ago I was totally alone.
Much of what I saw this awareness season was about hoping others would support and accept fibromyalgia as a real disease or some similar search for external validation.
But, until each of us as patients feel support and acceptance on the inside all the external validation in the world is not going to mean a thing.
All my life I have known I am a good writer but until I really started feeling it I squandered or ignored my talent. And I am sure we all have at least one thing in our lives we feel that way about.
It is the same with fibromyalgia.
Support and acceptance has to come from within before it will be realized from without. And honestly by the time you really come to terms with it that external validation is no longer important.
If you don’t know you are awesome even with fibromyalgia then it is not going to matter how many people become aware of it or of your diagnosis.
I have a lot of people in my own life who do not understand fibromyalgia but it is because they have not taken the time to understand and I accept nothing I say or do is going to force them to want to take that time and develop the understand.
The way I look at it the only thing I am responsible for is me and I have decided I am going to live my life anyway.
In my mind it is not much different from being successful at something like football.
Football players do not become great because there are cheerleaders waving pom pons on the sidelines or because fans fill stadiums.
No, football player is great because at some point he decided to do the work to find greatness.
Cheerleaders and fans are the reward.
The same is true for singers, dancers, and even writers.
It is also true for fibromyalgia.
Support, awareness and cheerleaders come after the work.
On my personal Facebook page I posted something last week about if you expect change in your life the first thing you have to do is stop bitching about it and do something.
While most of my personal friends were supportive of the statement, but someone felt I did not understand those who suffer partially because I have a great support system.
While I do have an amazing support system, I actually do understand what it means to be down so low you can’t see up because I have been there multiple times.
It is with the voice of experience, I confidently declare if you want more support, more awareness and even a few cheerleaders and fans in your life whether it be for fibromyalgia or anything else: YOU HAVE TO DO THE WORK!
There is no escaping it.
Every success in life, comes with work.
Would you like to know why I was too busy to hold still to write this post in advance of or on May 12?
I was: shopping for groceries, taking myself lunch, hitting a couple of thrift stores, building furniture with my husband, going to breakfast, buying a new but used car, planning to host graduation party, refinishing the kitchen floor with my husband, and plotting the landscaping for the front planter box. And that is just since Friday morning but also with help from my husband who is also a chronic pain patient and my daughter who also has fibromyalgia since it is her graduation and party.
And why could I do all of that?
Not because they support me and fibromyalgia but because I have done the work to support myself.
From the ground up, I built that great support system.
And from the most lonely, raw, scared, angry place in my soul, I absolutely, truly, and accept to my core I have fibromyalgia but it doesn’t have me.
So if you want to be a successful, happy person with fibromyalgia I am going to throw down the gauntlet and say if you really want it SAY YES AND DO THE WORK!
Decide right now that by this time next year you will have all the support and acceptance you think you need–inside and out.
Take responsibility for your own happiness and take your life back.
Do I have the life I had before fibromyalgia?
Do I want it?
This life I have created over the past two and a half years is my best life–pain and all.
It wasn’t and isn’t easy.
But I said yes and did the work.
And I continue to strive for more and better every day.
Does pain still happen?
Of course, I have fibromyalgia.
But because it really does not have me, I say yes and do the work anyway.
I thought about writing out some official-type pledge or proclamation for you to print out and hang up but then I realized I would be doing part of the work for you.
You have to say yes and you have to do the work–and decide what that work is going to be.
So if you are really sick and tired of being sick and tired, grab a piece of paper and write down a few things you can do and changes you can make starting right now.
Then, do the work.
That is exactly what I did one night when my own pain was off-the-charts and I had no one else to turn to but myself.
I started with things I knew I could do, eliminated the word “can’t”, and added the word “try”.
Two of favorite sayings are, “I don’t know if I can but I know I can,” and “What if I can?”
Today, I know part of the reason why I am succeeding is because it was so real and so personal and so I worked it like my life depended on it.
You have 363 days until May 12, 2013.
I dare you to see how far you can go.
I know you can try, and what if you do…the outcome is up to you.