Tuesday, November 9, 2010

Stepped On Toes And Bruised Egos

I created The Fibromyalgia Fun House, our support site on Facebook, as a different kind of support than what was out there. There were plenty of clinical, research-based sites. There are a lot of "searching for the cause and cure" types. There are tons where people want to cry and complain and leave their troubles. But what was missing, and why I think the concept organically formed on my personal page long before I actually "created" the fan page itself, was a group where you could get all of that with none of the judgment, dogmatic ideals or criticism we are bombarded with elsewhere in our lives. And then your friends would make you laugh yourself silly and suddenly the world was not such a bad place to exist in anymore! The pain not as all consuming, the fatigue and exhaustion and anger at living so misunderstood not so bad, because you were finally understood! That is the true and pure heart of the page, the spirit of the group and goal of its founder (me) and our members. I know plenty who have come to rely on the FFH to get through their day, use it as a place to gain strength to fight off all the doubt and degradation they have encountered, or are yet to as they come home from still another awful day of work to mix with a family that does NOT love and support them. Oh living with Fibromyalgia is not for the weak of heart!

But we are also a sensitive and emotional bunch! We have by and large been emotionally abused at one point or another during the progression of this illness by doctors, friends and family, co-workers and bosses, strangers and acquaintances. Tact and compassion are not qualities that are inherent in the human race! We had a couple upsets to the apple cart yesterday and feelings are still being repaired, emotional injury still healing. It was brought to our attention (and many of you already knew this) that there is a very vocal Fibromyalgia hate-site on Facebook. I followed the link posted and was saddened and amused at the same time by what I saw. Saddened because it was indeed a hate-site directly targeting Fibromyalgia patients and was extremely offensive and quite repulsive. Yet I was amused because the only reason this page was surviving was because of the controversy that was sucking everyone in! Each person that engaged with these idiots only served to further the hate-site purpose. They are trying to create chaos and get a rise, and they are succeeding! Remember how mama told you to ignore the bully on the playground, act like it does not bother you, and they will get bored and go away? Well mama Leah is sayin' the same thing here! Ignore that crap! Many of us are too weak in health to deal with the stress it causes and the rest can put their energy to better use. I quietly did my due diligence and "reported" the page and returned to my la-la land of Fun House follies to find my own page being ripped apart!

One well meaning but overenthusiastic Fun House member touched on a subject that is a hot button, and did so with an air of authority. I have seen a couple others come on our page with that approach and were chased off with their tail between their legs by group members before I even logged on to see what was happening! We are very protective of our "special place" to be accepted and understood and no one wants to be preached at. I know some of you felt our ranks had been infiltrated and defended our territory with such pride and conviction I did not realize what a big deal it actually was. For that I do apologize, I missed the boat. But I want to take this as an opportunity for us to grow bigger and better. I have been talking since day one that a main reason I believe we are still treated so poorly is because there is so much infighting amongst the Fibromyalgia community itself we cannot even begin to band together and further our cause to the world at large. The Mission Statement of our Fibromyalgia Crusade states: 
To present a united front and stand strong as one collective patient body diagnosed with Fibromyalgia Syndrome. We accept the “cause” is medically unknown at this time and there may be a cluster of illnesses sharing similar symptoms residing under this diagnosis. Working with that knowledge, we will not accept being treated as though this is “all in our head” or we are crazy, lazy, wimpy or junkies. We are suffering real pain from real illness and deserve respect from those we know, recognition from the medical community and results in managing our symptoms and quality of life. 
I can only surmise there have been countless others that have attempted similar efforts in the many years folks have been suffering from Fibromyalgia. And I believe that as the numbers get bigger, which is critical for true awareness and to affect real change, the risk increases as well. Well I will be damned if we are going to go the way of the dinosaur! We are on a roll here, people! We just celebrated our 1000th member in under 1 month this last weekend. We are learning and growing and gaining confidence and moxie and getting stronger in mind, body and soul through the strength of each other. The progress in my own life, as well as what I witness in many of my friends, is remarkable. So let's let the division, the difference of opinion, the harshness of approach, end here. Let's get back on the same page and stand strong in support, true and loving support, of each other and the individual journey we each are traveling while grasped onto the hands of our fellow Fibrates for that strength we just cannot get anywhere else.

Thanks for joining,

1 comment:

  1. I am so thankful that I found this blog. I thought that no one else understood what I am going through with dealing with Fibromyalgi and I also have Lupus. I have thought about blogging and after reading your blogs I think I will start.