Fibro Awareness Day

The ongoing journal of disability advocate, Kelly Cozzone.

Why is recognizing May 12th as “Fibromyalgia Awareness Day” important? There are several reasons.

First and foremost, Fibromyalgia must become known as a “true” illness. While we who suffer from this awful disease already understand this, there are many more people out there who still haven’t come around to our way of thinking.

And why should they? We are patients. But by having a government accept this and recognize it officially through, for example, Bill 883 in South Carolina., the notion that fibromyalgia is “all in our head” becomes less credible, even preposterous.

It is way too easy for a doctor or family member to use the excuse that FMS isn’t real as a way of dismissing our symptoms. It’s also extremely difficult to get a doctor to treat any symptom which they can classify as “drug-seeking” behavior. I’m sure that many of you who suffer severely from pain that cannot be attributed to an “injury” have got the “look”. You know, the one your doctor gives you when he or she believes you are exaggerating the pain. Generally those doctors are the stubborn ones who still hold onto the notion that FMS isn’t real.

How wonderful would it be to no longer have to face that look? How great would it be to sit in the office of a doctor who truly wants to treat your symptoms and alleviate the debilitating pain? In order for that to become the norm– instead of the exception – it is imperative that FMS become formally recognized.

Will that solve the problem? Will that be the turning point?

While it certainly won’t solve the problem, it most assuredly will be the turning point. It will be one of the watershed moments on the route to unlocking the mystery that is Fibromyalgia.

And secondly, it is important that Fibromyalgia become formally recognized at the federal level. Why?

This is where the major funding occurs. Not necessarily from the federal government but mainly from private research companies. This must occur in stages. In order to obtain results at a federal level, we must first succeed at a state level. That means we need ONE state to take the lead for the rest of the country. One state brave enough to say this has gone on long enough and we need to get to the bottom of Fibromyalgia. We have that in South Carolina. I have found a Senator willing to stand up and be heard.

This will be the boost we need. The hope? Other states will follow South Carolina’s lead. We were so close in North Carolina. However, at the last minute, everything fell apart. Once Bill 883 is enacted into law, politicians won’t have to “take a risk” and stick their neck out to bring about legislative change.

Instead we will be able to explain to them that they will simply be following suit. In order words, once Bill 883 passes in South Carolina, when we approach the 49 other states, we will have even more pressure to place on politicians in other states to follow suit.

So where does all this lead? Hopefully it will all lead to funding, to research, to more effective medications, and to treatments that actually work. That is why I work so hard. That is why I wake up every morning looking for the most up to date information on Fibromyalgia that I can find. That is why I spend hours on the phone with politicians, the CDC, the WHO, and local doctors.

I have been in contact either by phone or mail with every single Senator and Representative in South Carolina. This is something I do on a regular basis. It keeps Bill 883 and my voice at the forefront of their minds. As in most things, “Out of sight is out of mind”, and in the advocacy business, one needs to be heard. This is why I spend so much time preparing.

So, the bill passes, what’s next? We’ll delve into that next time. Until then, live life with hope and faith.

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About the Author:

Kelly Cozzone is a regular contributor to Fog Magazine. Besides writing, she is an ardent disability advocate in the state of South Carolina, where her efforts have changed lives.