Whys & Wherefores

The ongoing journal of disability advocate, Kelly Cozzone.

I was going to go into what needs one once a bill passes with you today. Instead I think I’ll share with you what it’s personally like for me as an advocate. By that I mean, what do I do? How do I do it? And “What does it all mean to me?”

I’ve already shared with you why I became involved as an advocate. So now indulge me as I tell you how I got started.

Upon deciding to become an advocate, I spent the next week or so trying to figure out what to do next. To tell the truth, I had no idea how to start. Sound familiar?

I’m sure it does. That’s one of the first questions I get. How do I get involved? That is such a difficult question to answer. Mainly because it’s up to the individual to decide how involved they want to be, how much effort they want to expend. For me, complete involvement is the only option. I want to be at the forefront of the progress we are making. Does this make me sound vain? It really shouldn’t. I don’t do this for wealth or to have my name known. I do it because I want to make a difference in people’s lives.

I want to know that this illness became something good for me. I have goals I want to achieve. Nothing short of full involvement will guarantee that I achieve those goals. What are those goals you ask?

• I want to see Fibromyalgia become a household name

• I want to educate those who still believes “it’s all in your head”

• I want to guarantee that doctors all recognize Fibromyalgia

• I want to help further the progress in the medical treatment of Fibromyalgia

• I want to see the (U.S.) Social Security Disability Benefits system completely reformed to meet the needs of those who qualify so that they don’t have to go through what my parents went through

Those are the main goals I have. Are my goals unattainable? Am I overly ambitious? Am I setting myself up to fail? While some people would say yes, I don’t believe it. I believe that through perseverance and dedication these are attainable goals. I’m not insane enough to think that it will be an easy process or one that can be accomplished quickly. However, I do believe that it can and will be done.

So what was the first thing I did as an advocate? Well, as boring as it sounds, I researched everything I could find out about the disease. I read all the books in publication, I read everything I could find on the internet. Once I had completely educated myself on the disease, I made a list of everything I could think of that needed to be done in the area of Fibromyalgia. I made lists of conflicting information regarding FMS. Finally I made lists of everyone who recognized FMS –but more importantly, those who didn’t.

From there I began writing to the CDC (Centers for Disease and Infection Control) and the WHO (World Health Organization). Why did I start with those two organizations? That’s an easy one. The CDC and the WHO are 2 of the leading health organizations out there and neither one had any information on FMS listed on their website. I wanted to know why this was happening and what needed to happen in order for FMS to be added.

I have followed it up with letters and emails and phone calls to Senators, Congressmen, and Representatives trying to gain their assistance in our fight for the rights of people with Fibromyalgia. While I have been mildly successful, my fight is far from over. Until all of my goals have been accomplished I will continue to fight for you.
Until next time, 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.