I met Amanda Mitteer at Invisible No More FMS-CFIDS-MCS-MPS Awareness Meeting May 11, 2002. Without being asked, Amanda took the initiative to help set up the literature table and assist in other preparations prior to the meeting. I was favorably impressed with this articulate, helpful, intelligent and beautiful young woman who had a strong commitment to Fibromyalgia advocacy. As the day wore on and others grew tired, Amanda was among those who used her energy when needed.  She organized the delivery of extra food to a homeless shelter nearby and loaded the van without being asked. Later I learned that she was attending the event in support of her mother who has FMS.  Amanda is a law school student and a participant in the Miss Vermont Scholarship pageant. Amanda's platform in this event was Fibromyalgia.  She became the second runner-up to this year’s Miss Vermont.

Amanda’s story and her commitment to advocacy on behalf of Fibromyalgia patients demonstrates the variety of fronts that we as patients and survivors can, and must, fight on.

OFCW: Amanda, would you mind telling us about yourself and how you learned about Fibromyalgia?

Amanda: I am 23-years old and currently attending Pierce Law in Concord, New Hampshire on a scholarship. I will graduate this year with a concentration in Alternative Dispute Resolution. 

Like many people, I had no idea what Fibromyalgia was until a doctor diagnosed my mother with the illness my senior year at the University of Vermont.  I knew that something was wrong with my mother because she looked incredibly sick, but I had no idea that this illness had a name until that year. 

OFCW: You seemed to have learned quite a bit about the disorder, could you explain how and why?

Amanda: Since I knew nothing about FMS and felt like I should know everything, I began reading information about the disorder on the Internet, such as the Co-Cure web site. Then, I read the National Fibromyalgia Association's pamphlet.  My mother also gave me some information on "What Your Relatives Should Know About Fibromyalgia." From there, I read some books, such as Doctor Jacob Tietlebaum's "From Fatigued to Fantastic."

I found myself becoming frustrated with people who either did not know about FMS or were uneducated about Fibromyalgia.  I remember strangers saying to me (about my mother)  "But she looks fine." Some people could not even say Fibromyalgia. And, some relatives said that the illness was all in my mother's head.

OFCW: Your frustrations are ones many of us share! You realize that the comment "It's All in Your Head" is made to FMS and CFIDS sufferers so often refer to it by Acronym: "AIYH"

When did you decide to enter the pageant and use FMS as a platform?

Amanda: Something had to be done! I remembered past Miss Americas acting as spokeswomen for those with Diabetes and AIDS.  I decided to look into this organization.  Of course, I had questions: I wondered if I could I even participate?  Did I even have a chance? Was I pretty enough? While researching the Miss America Organization, I learned that it was not about beauty.  The Miss American Organization provides scholarships to women to become educated and to pursue voluntary community service efforts.  It helps contestants become spokeswomen for a platform issue of their choice--something true to their hearts and important to them.

And, Fibromyalgia was very important to me because it affects my mother. There is a special bond between a mother and daughter. We would do anything for one another and always have. So, I entered the Miss Vermont Scholarship Program last year. There is an interview portion of the pageant, which allows contestants to speak about themselves and the issue they have chosen as a platform.  It was very difficult for me to speak to the five-member panel of judges about Fibromyalgia.  I had a hard time explaining this illness to them. How do you explain something that you cannot see? How can you explain Fibromyalgia to someone who does not even know anyone with the illness?   

Although I did not place that year, I decided to try again this year. Before the Miss Vermont Scholarship Program, I had a lot of help from past Miss Vermonts and they encouraged me to do some real soul searching.  What is it like having a mother with Fibromyalgia? How can I speak to children about Fibromyalgia?  How will I get my community involved? 

I became friends with Jennifer Bush, a 19-year old pageant contestant in Georgia. Her platform issue was also Fibromyalgia, and she suffers from the illness. A contestant from last year’s pageant, Catherine Wareham, sent me an article that Jennifer Bush wrote about having Fibromyalgia and pursuing it as a platform issue in Georgia. I found Jennifer’s e-mail address and we began writing back and forth.  I also spoke a lot to her mother, Kay, who sought my help in understand living with a Fibromyalgia sufferer.  Kay had a lot of questions about why her daughter would wake up cranky and then about what books to read.

Through these correspondences, I made some true friends and experienced real soul searching.

When I went before the five-member panel of judges on July 5th, I was absolutely shocked at how much information the judges knew about Fibromyalgia.  This was different than last year’s judges…perhaps because of the easily accessible World Wide Web these days…or perhaps because there are millions of sufferers and one judge knew someone with Fibromyalgia and educated the other judges.  They understood how to diagnose a Fibromyalgia sufferer, and they also knew the statistics.  Because they were so educated, I was able to speak freely and emotionally about my platform issue.  I felt spectacular after my interview that day, and on the July 6th pageant night at the Barre Opera House, I became the second runner-up in the Miss Vermont Scholarship Pageant. It was truly a rewarding experience because I met audience members after the pageant that had Fibromyalgia.  I educated people.  I carried out my promise in regards to something having to be done.  

OFCW: What are your future plans?

Amanda: Next year, I plan on trying again.  It will be my last year to participate due to the age limit.  I live by a quote, "Good, better, best.  Never let it rest 'till your good is better and your better is best." Two years ago I was good, and this past year I was better. But, next year, I will be my best. I will try my best to become Miss Vermont 2003 and represent at Miss America the millions of women suffering from Fibromyalgia.

Someday I would love to become a professor of law. I thoroughly enjoy educating people; this interest arose from participating in the Miss America Organization Scholarship Pageants.  I would love to have a family one-day, and to continue assisting those with finding a cure for Fibromyalgia.  I would do anything to help my mother!  I know that she would do the same for me. And, now that I have met so many Fibromyalgia sufferers, I have even more of a reason to continue educating people about Fibromyalgia and to attempt at making a difference.

OFCW: If you were giving advice to someone who had a family member with an invisible disability (i.e. FMS, CFIDS, MCS etc.), what would you tell him or her? 

Amanda: If I had to give advice to someone who has a family member suffering from an invisible disability, then I would say that showing support could make all the difference in the world to that person.  Take the time to say three simple words, "I love you." Educate people-the more people that understand invisible illnesses, the further we will get with research efforts."  Help these sufferers because you never know, someday it could happen to you!

Amanda and her mother Dana at the Awareness Day Conference in Washington, D.C.

Miss Vermont Scholarship Organization

All opinions are those of the person interviewed and not those of Our FM-CFS World, Inc.

Interview Conducted By:
  Anne-Marie Vidal
Awareness and Advocacy Coordinator