Thursday, October 15, 2009

Update on Fibromyalgia Sufferers Against Dave Ryan

Petition for Fibromyalgia Sufferers Against Dave Ryan: Please sign and support the rights of fibromyalgia sufferers to be treated with dignity and respect!

Fibromyalgia Sufferers Against Dave Ryan
(the Facebook Cause started by Jessica Barto) has gained 1349 members in the two days it's been active! Donations can be made directly from the Cause to the National Fibromyalgia Association, which has been instrumental in helping publicize the incident and gaining us members and supporters. Please help us by showing your support - join the Cause and donate! Contact Dave Ryan & his employers, and let them know that his remarks were wrong and that the millions of people with fibromyalgia deserve an apology.

I have heard that Twitter has issued Dave Ryan a warning, which caused him to take down the tweet that said that people who disembark from airplanes slowly should be shot, but he has not removed the "Also, people who claim to have fibromyalgia" one that followed (a screenshot of his original tweets can be found in the post below. I see this failure to remove his reference to us as another condescending offense. I have also heard that Clear Channel Communications, the owner of the radio station, has been trying to squash this story and also refuses to take responsibility. I can't say for sure this is what is going on, but they are not apologizing or even recognizing that Dave's so-called "joke" was inappropriate and unacceptable.

In two days we have amassed the support of around 1500 people (some of us on Twitter don't have Facebook or have not yet heard the news of the Facebook Cause). With the continued endorsement of the National Fibromyalgia Association, I can only imagine this number will continue to grow. Fibromyalgia sufferers around the globe, as well as their families, continue to be outraged that this kind of marginalization has not yet been answered for.

As I have said before, these unfortunate events have given us an opportunity to draw more attention to our illness and the suffering we experience, not just as a result of our symptoms, but also because of the prevailing attitude of disbelief about the condition, the dismissal of us as hypochondriacs, malingerers or mentally ill. In addition, fibromyalgia is an 'invisible' disability - we suffer daily at the whims of ignorant intolerant people who harass us for "getting in their way" because they don't know we are disabled and cannot move at their pace or do what they expect. They see us as lazy people expecting preferential treatment. Invisible disabilities are like ghosts - they haunt and torment us, but since no one else can see them, they don't believe in them. We are treated with abusive attitudes and denied the rights and support that people with visible disabilities often receive automatically. We are second class citizens, often blamed for being ill even if we are believed to be suffering. We are treated with disdain and ridicule. And we have done nothing wrong.

Nearly everyone with fibromyalgia or other chronic invisible illnesses have lost their previously extremely productive lives. We've lost livelihoods, friends, families, the ability to be self-sufficient, the ability to do most of our favourite things, the ability to take care of our children. We have often lost our entire identities to this illness. We are constantly reminded of our losses and have to cope with the grief on a daily basis. We see our losses reflected in the faces of our loved ones who miss the energetic people we used to be. We suffer immeasurable emotional pain when we cannot play with, pick up or take care of our children. We miss out on so much of life, we struggle to hold onto any joy. We fight our own demons of worthlessness - we do not need people like Dave Ryan adding to our burden by spreading his derogatory, contemptuous views to his thousands of listeners.

These days, it seems nearly everyone knows someone with fibromyalgia or a similar illness - myofascial pain syndrome, chronic fatigue syndrome, lupus, lyme disease, the list goes on. It is likely Dave Ryan already knows people with these conditions. I wonder how it made them feel to hear him dismiss them so carelessly? He has turned millions of suffering individuals into a punchline. Some day someone very close to this man may very well have fibromyalgia, perhaps even Dave himself. I wonder how he will feel about his off-hand remarks then? Those of us with this illness irrevocably turn to each other for understanding and support. Will he be the next one coming to us with his story of grief and pain? Is that what it will take for this man to issue a simple apology for displaying his prejudiced ideas in front of the entire world and using his position in the media to spread this ignorance?

I would not wish this illness on anyone, not even Dave Ryan. I believe that what goes around comes around. I believe that ultimately Dave's actions will hurt him more than it will hurt us - he has opened a door for us to create awareness, the opposite of ignorance. We are turning lemons into lemonade, taking advantage of this opportunity to rid the world of much more suffering than his actions have brought into it. That, I believe, is the real poetic justice.


I sometimes write things that I don't really mean or believe. These are not to be taken literally, nor as definitive statements about me or my beliefs. Thoughts and emotions are transient, and I reserve the right to change my mind, generalize, exaggerate, give strong opinions, or write other possibly offensive statements. I don't lie, but I may say something that's not true to check whether I believe it or not, or to make a point. Call it creative license. This is my blog, and do have the right to say what I want. I'm using it in creatively therapeutic ways. Whatever the reader may think of me and my words, please believe that my core intentions are always good and I never willingly hurt anyone.