Advocates' Tales

February 4, 2008

by Dianne Dillman, diagnosed with fibromyalgia, mother of Martin Steinberger who has been diagnosed with juvenile arthritis

Public speaking terrifies me: I get tongue-tied, I sweat, shake, and feel faint.  Yet I attended the Arthritis Foundation’s Advocacy Summit for the last three years. My son, Marty Steinberger is a natural speaker, and the first year kids were included at the Summit we attended the program. I saw it as an opportunity for Marty to use his talents to help others.  Somehow I would manage.

At the summit you learn how to advocate and what to advocate for. The Arthritis Foundation makes it easy for you.  They train you, feed you, bus you to Capitol Hill, and they schedule your appointments.  You go to your meetings with Arthritis Foundation personnel who do the introductory and closing remarks. The meetings are short; we each speak only a minute or two.

My first two visits were difficult. I was nervous.  I talked about myself and my   struggles with fibromyalgia, but I felt like I was whining. So I switched gears. I still mention I have fibromyalgia, but I speak about all the people I’ve met at the summit who live in states that have no pediatric rheumatologists (PR).  I speak about the family in Nevada who flies once a week to California to their daughter’s PR, and the family in Colorado who had to fly to several states for just a diagnosis. I speak about the huge disparity in Federal funding for research and programs for pediatric diabetes and arthritis (we ask for increases for arthritis, not decreases for diabetes).

I also point out the need for a national registry for children with rheumatic conditions. There has not been a census since 1988. We say there are 300,000 kids with arthritis but that number is almost 20 years old! I tell them two of our campers died in the last 6 years.  Because they don’t know that kids can die from arthritis. I care passionately about these issues, and because I do, I find I can do this, I can be an advocate.

by Martin Steinberger, age 18, diagnosed with juvenile arthritis, son of Dianne Dillman

My name is Martin Steinberger, and I am very different from my mother especially in this regard.  I love meeting new people and being the center of attention in a large group. Public speaking is something that comes very naturally to me. Now, knowing this, the idea of actual advocacy on the Hill was scary to me too.

When we arrived in Washington D.C. for the first time, probably the main thing running through my head was that I was going to get to miss school. As the first day’s seminars ended however I found myself looking forward to putting my new found knowledge to the test. I have to say that, even with the excellent coaching from the Arthritis Foundation I was not prepared for the atmosphere of Capitol Hill.

The very first meeting that my group had arranged was definitely a life changing experience. The only aspect where I felt comfortable was the “Personal story” portion. Luckily my story of living with juvenile arthritis is kind of a tear jerker.  I can say that the personal story is probably the most effective when meeting with a representative or their aid. 

In closing, my mother and I want to send a message if possible to anyone with a story to tell or who has had their lives touched by someone with arthritis. They don’t have to be kids and neither do you. The important thing is showing up. Every day people in Washington meet with hundreds of groups for around 10 minutes each.  It’s important to find a way to stand out, a way to really get the message across.  That is the challenge we present to those affected by arthritis. Make a difference!

Go to the Arthritis Foundation Advocacy page for more information on how you can join these efforts!