Tuesday, May 10, 2011

It's Time to Start Giving a Damn

Anyone who inhabits the fibro world is well aware of the importance of May 12, Fibromyalgia Awareness Day.  May 12 is designated as the day to raise awareness and dollars for fibromyalgia research and education. May 12 gives a face to this invisible disease. On May 12, we uncloak and become visible. Nationally and internationally, there will be walk-a-thons, fund-raisers and T-shirt sales, etc. to educate the public, medical community and government about fibromyalgia and its sufferers. But it is only one day.

In 1997, two women with fibromyalgia met and organized informal gatherings with other fibro patients. Their goal was to increase public awareness of this condition which led to the formation of the National Fibromyalgia Association, a non-profit organization located in Orange, California.  May 12 was chosen as National Fibromyalgia Awareness Day which evolved over the course of 5 years before becoming the annual event that it is today. Unlike America, Canada does not have one centralized association for fibromyalgia. Individual branches exist by area and province. The National ME/Chronic Fatigue and Fibromyalgia Action Network and the Canadian Women's Health Network (http://www.cwhn.ca/) are 2 excellent sources for support and information.

Purple is to fibromyalgia as pink is to breast cancer.  Every cause has its own bracelet and fibromyalgia is no different. Purple wrist bands are sold  in an effort to provide funds for research and education and more importantly, to seek a cure.  I've wondered how colours are designated to specific causes and diseases. Who gets to decide?  I don't have an answer to that question, but I do know that in colour psychology, purple is said to 'uplift the mood and calm the mind.'  If you ask me, it should be a greyish-white colour, something resembling fog. For non-fibro readers, fibromites often stumble around in a mentally sluggish state known as 'fibro fog.'

There are no lack of charities or causes to support. I am not suggesting that Cause A is more important than Cause B.  But when I googled fibro awareness events, I expected to find many more hits than I did.  I believe the United States are more visible in their awareness efforts partly because the NFA is American-based.  It is disheartening to realize that as far as causes go, fibromyalgia awareness campaigns seem to be every bit as invisible as the people who embody this debilitating disease. We live with the hope that some day fibromyalgia will be a household word.  We can only wish for media-grabbing charity dinners, walk-a-thons and tele-a-thons that promise world-wide exposure. We can only dream for the day that brings a cure.

On May 12, I'll be doing my own little bit for the cause. I'll wear purple clothes, purple wrist bands and hand out leaflets or bookmarks. In the grand scheme of things, my efforts may not make a glimmer of difference. But when one dedicated campaigner becomes 2, then becomes 10,  then 50,  then 1000 people and so on, all doing the same thing, suddenly that lone effort has made phenomenal strides.  Raising awareness can happen with  one person. Someone has to take that first step and be the first one on the dance floor.

I like to compare fibromyalgia to the story of Scarlett O'Hara and her beloved Tara.  When flare-ups seem like they will never end, despair can set in.  Fibromites feel as if their former healthy lives are a thing of the past : Gone with the Wind.  But Scarlett was one tough broad.  She knew better times lay ahead. Tomorrow is another day. Scarlett O'Hara gave a damn and frankly, so should everyone.


  1. Cathy, This is a well-written informative post. I agree that it seems like fibromyalgia is given much less attention than other illnesses. That means less funding from the government to assist with research and finding a cure for this disabling illness. It is next to impossible for people who have fibromyalgia to receive help, such as Disability, that, in reality, only serves to meet minimal living expenses. Perhaps it isn't beneficial for the Government to fund research which would provide solid evidence that fibromyalgia is indeed a real disease. Instead the preferred explaination is that the illness is just a "figment of our imagination" and of the hundreds of thousands of people who have this illness. I find it ironic that the people who could make the greatest difference in spreading the word, those who suffer from fibromyalgia, lack the physical stamina and energy to speak out about it. Thank goodness for the warriors who give everything to help fund private studies, support groups, and writers, such as yourself, who bring awareness for those unable to do so. We all need to learn to be more visible, every day, in some way. No one should suffer persecution for an illness they have no control over. No wonder so many remain invisible. It is difficult enough to live with the illness, without suffering a social stoning for costing the Government money. Because so many people who have fibromyalgia are invisible, people are unaware of the astonishing number of people who live with this illness every day. I think it would be a powerful message to show through some form of social media, such as photographs or film, The people who live with fibromyalgia. It could consist of as many people who would participate, saying what we used to do before we contracted fibromyalgia, and how it has changed our lives. This would show the world the human side of this illess and erase the stereotypes that people have towards those who have fibromyalgia After all, I am a person who has fibromyalgia, but fibromyalgia does not have me. We all can have a bit of warrior in us! Thank you for speaking out for those unable to do so, through your writing and the sharing of your personal journey with the world. <3 Deb

  2. Thanks Deb for your generous and heartfelt response. We will continue to fight. Once upon a time so many diseases that we can now cure were feared and rapidly fatal. I kind of use an example of relativity. We look back on the dark and middle ages now and shudder at the medical treatment. Over the centuries, medical science has advanced rapidly. One day in the future people will look back and remark how awful we used to treat the people that have fibromyalgia or chronic fatigue? That must have been primitive to live in such darkness and ostracize those in such pain. How could society have been so cruel to them? They'll say that because it will have been eradicated by then or prevented and/or treated very simply. One day.

    Thanks for writing.