Life of an Advocate

The ongoing journal of disability advocate, Kelly Cozzone.

Advocacy…the beginning of the end. Sounds like a dire statement, in most things in life it would be. In this case, it’s absolutely not. Advocacy marks the beginning of the struggle for acceptance and healing. Eventually it will be the end of stigma and myth.

In simpler terms, advocacy is speaking out. It’s teaching someone something they didn’t know. I am a Fibromyalgia Advocate. I speak out against the stigmas attached to FMS, Fibromyalgia Syndrome. I lobby for more research, medication and better health care for those who struggle with Fibromyalgia. Most importantly, as an advocate I educate others on the often misunderstood diagnosis of FMS.

To be an advocate you have to be able to speak openly and honestly even in the face of adversity. You have to have the courage to take on the critics head to head. Believe me, on more than one occasion I’ve had to deal with the “disbelievers” both in the political arena and out. You may know who I’m talking about–the ones who have espouse the “it’s all in your head” theory. While I may not always win the battle, I will never give up the fight.

Advocacy can be a loveless and thankless job. The pay isn’t all the great either, but we don’t want to tell anyone that. The reward for those like me, the advocates, is seeing the first FMS commercial on television. Or watching as the FDA (the Food and Drug Administration) finally approved Lyrica for the treatment of Fibromyalgia.

In this area of FOG Magazine I am going to do two things.

• My first goal is to welcome you into my life as an advocate. I will try to show you how I work. The people I speak with, the projects I’m currently working on and the progress I make are all things I’ll share with you along the way.

• The second goal I’d like to achieve is to show you through my words and actions how advocacy does make a difference in the life of others. Without advocacy, mammograms wouldn’t be the life saving test for breast cancer that it is now.

So the question remains, why am I an advocate?

The answer is truly easy. I also suffer from debilitating illnesses just like many of you. I spent the first year after my diagnosis angry at the world. I was constantly complaining to anyone who would listen about the lack of research, medications and proper care associated with Fibromyalgia. I was extremely aggravated by the non-existent empathy we often receive from our communities and health care professionals.

One day I was in the middle of another one of my tirades when my mother finally said, ‘Then why don’t you do something about it”. It was in that second that my mission was born! I decided right then and there that I wouldn’t stop until all the obstacles in our path were knocked down.

What I want to accomplish more than anything is to be able to reach a point where the medical community–finally, once and for all–accepts Fibromyalgia as a real illness. To wake up one morning and hear the words, “This is what causes FMS and here is what we need to do to cure it!”

Will this happen? Will we ever know what causes Fibromyalgia? Will we ever be able to cure it, or will this be something we have to learn to live with?

If I didn’t believe that these things were possible, then I couldn’t do what it is that I do. With our strides in technology and medical testing, etc., there isn’t any reason we can’t accomplish this feat as well.

It does, however, take time. Time to bring the knowledge to the right people, the people who make the decisions. Time to convince those in power to set aside the money needed for vital research. Time for pharmaceutical companies to develop the appropriate medication.

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.