Friday, July 13, 2012

Awareness Please!

"If you know neither the enemy nor yourself, you will succumb in every battle." Sun Tzu, The Art of War

The definition of the word crusade is to advocate for or exert oneself continuously, vigorously, or obtrusively to gain an end for a certain cause or person. Well I am on a crusade to clear up a few things about this misunderstood and diverse illness known as Fibromyalgia Syndrome. Quite frankly the state of affairs is a mess. Medical science has not uncovered a source, the root cause of this condition. Progress has been made in recognizing it's not a rheumatic illness but instead neurological in origin. But patients experience sweeping differentials in symptoms and severity, successful treatments and management, and core beliefs surrounding the cause of the condition itself. Awareness efforts are disorganized and patients often judgmental, smug or incompassionate towards each other. Folks who have recovered can preach how something worked for them so therefore will work for everyone. People who still suffer may believe another persons recovery or management means they must not have really had Fibro in the first place. But this is not a one-size-fits-all illness!

The Art of War by Sun Tzu is an ancient and brilliant wealth of Chinese philosophy. It's concepts are still widely used today in both business and political strategies. One pearl I especially appreciate encapsulates the action of creating division among your opponent. Entering their camp, infesting and spreading dissent among the masses. If they are busy fighting themselves they can't fight you! Without ever even going to war you have already won. Sadly I look upon our community as the opponent. In our anguish we have created so much dissent among ourselves that is exactly where we sit. Lonely, isolated and desperate, internalizing the experience so it can only be seen from a limited and pain filled individual perspective. So broken we cannot even begin to come together as a collective and arm ourselves to change the reality of living life with Fibromyalgia. But we are not alone, there are 6 million of us just in the USA.

I believe with a change in mentality we can rise above this and focus on the true enemy. Doubt, disbelief and ignorance. Our real opponents. What I am proposing is not easy and requires an opening of the heart, mind and soul. It challenges whatever comfort zone we have created as a way to survive each day living in throbbing, shooting pain. Slipping into a thick coat of armor to protect ourselves as we venture into the outside world. But I am hard pressed to find a Fibromyalgia patient satisfied with the knowledge, treatment, awareness, research or management modern medicine has to offer. Something has to give, and it starts with us! Search your heart and mind and see what little bit you can do to be a small puzzle piece in the huge revolution necessary to change the way each person with Fibromyalgia experiences life going forward. This illness is hard to define, difficult to unite and darn near impossible to mobilize, but I believe we the patients can do it. Accepting our differences is mandatory. Standing as a collective patient body and demanding recognition, respect and results is critical. Hope is paramount. But we can do it.

We are all on our own journey through this thing called life. We have our distinct challenges and individual theories and beliefs and things we are willing or not willing to try. The point of uniting is to dispel forced change and expressed criticism. It is to embrace respect and compassion towards each other. I have recovered leaps and bounds from the disabled and hopeless woman Fibromyalgia broke me down to. But I can only speak to what has worked for me. I cannot tell someone else what will work for them. We each have to figure it out for ourselves. So research, learn, read and educate yourself as much as possible. Don't give up on the never ending nightmare of living with Fibromyalgia. This disease will take everything if you let it, but be stronger and push back harder! This is your life we are talking about. And please remember to treat yourself well, for that is the first step in showing others how to do the same.

Thanks for joining,

This blog was originally published on 9/19/10. Boy was I in an impassioned Prednisone rant! Nearly two years later I want to thank you, those who read this blog. Those who have taken action, spoken up or even simply started respecting themselves in a whole new way knowing we may be isolated but are far from alone.

1 comment:

  1. Thank you Leah! I have learned this the hard way. Yours is the only fibro blog/community I haven't jettisoned after getting skewered by other commenters. It's quite sad how fibro blog trolls will (and do) eat each other alive.