Raising awareness:  One voice, a goal and persistence

It was just over a year ago that I heard the words. "You have Fibromyalgia, Chronic Myofascial Pain and Arthritis in your cervical spine."

I had been through four years of rigorous testing, of running back and forth to the ER and to every specialist imaginable, and hearing that all familiar statement, "It's all in your head". I can understand why most of us with any of these illnesses develop a healthy anxiety disorder to go along with it, especially when doctors and family members don't believe in our knowledge of our own bodies.

So, I finally had some answers; but it definitely wasn't what I wanted to hear. I felt like I had been handed a death sentence. And I found out that it's true what they say about the stages of grief. I have been through all of them and it wasn't pretty. In time I came to that final stage: Acceptance.

I have accepted my diagnoses and I am determined not to let myself become a victim or prisoner of these illnesses. I am 36 years old. I have graduated with honors from a Health Care course. I work in geriatrics in a nursing home, and I work with a lot of pain and exhaustion for the most part. But I get through it.

My advocacy work is directed toward education about Fibromyalgia (FM), an illness that baffles the medical community as well as our family members and those of us who have it. It’s time that people stopped saying, "Fibro - what?" when I try to explain what is wrong. It’s also time for those in the medical community who think FM is a catch all, waste basket illness to believe that what we have is real and not in our minds so that we receive the respect and treatment afforded others with chronic diseases.

This past April, I wrote letters to over three hundred Members of Parliament. I wanted to make sure they were aware that May 12th is International FM Awareness Day, and that it had been recognized and passed through the Canadian Senate. In response, I received a number of letters and a few phone calls. Health Minister Tony Clement wrote to say that some of his colleagues had already spoken to him about my letter.

The more people who are aware that May 12th is FM Awareness Day, and the more people who are aware of FM and the signs and symptoms of the disease, the more support we might have in raising funds for research into the cause and cure for FM and medications to alleviate the pain and fatigue that accompanies it. Right now there is nothing specific for people with the disease.

My daughter, who is fourteen, volunteered with a few other students to do oratoricals in front of six hundred of their fellow students. She decided her topic would be FM. She described the symptoms, the associated illnesses that come with it, and the effects it has on a family. I have never been so proud. Like so many things, raising awareness begins at the grass roots level.

My next goal is to write to the more than 5000 mayors of the cities, towns and communities of Canada. We need their voices to join ours and be heard.