Residence: New York
Diagnosed: March 2005
The cruel comments tossed around by classmates during her middle school years could have caused Elizabeth Kinzey to shy away and withdraw from her classmates and friends. Instead, the mean-spirited taunts have inspired her to teach others about fibromyalgia. Elizabeth, along with her friend, Yaqing Wen, participated in their school’s “Coffee House” event where they gave a brief talk, performed a song and raised nearly $100 for the National Fibromyalgia Association.
Q. What is a “Coffee House” event? Who attends these events?
A. It’s an evening where pretty much anyone who wants to can perform. They are normally musical acts, but there are also poetry readings and other things like that. It’s open to the whole school---the faculty, parents and students.
Q. What prompted you and Yaqing to sign up for the program?
A. We had wanted to do something for Fibromyalgia Awareness Day and had been putting things together already in our band. We went in and talked to the school chaplain, and he said because of schedules, it would be hard to have our own event. So he suggested that we talk to the person who ran the “Coffee House.”
Q. How did you to prepare for the event?
A. We started practicing the songs that we were going to play a few weeks beforehand. We also sold baked goods at the event, so the day of the event, we made cookies and brownies. We had a lot of our friends come and help.
Q. What did you do during your designated time?
A. We gave a brief talk, and then we played a Sum 41 song. It’s kind of alternative-rock, punk-type music. I played the guitar and sang, and Yaqing played bass. We also had small information packages that people could take if they wanted to know more.
Q. What was the audience’s reaction?
A. We had a lot of support, but most of them didn’t know about fibromyalgia at all.
Q. What inspired you to educate others about fibromyalgia?
A. When I was first diagnosed, I was in middle school. I got some negative reactions to it, a lot of jokes and stuff. Most of them were based on ignorancelike “crybaby” and that kind of stuff. That just made me want to get the message out about what it is: one, that it’s not contagious; two, that I’m not dying; and three, there is something wrong. It’s not that I’m not doing something because I don’t want to, or I want to get out of P.E. class. I just thought people should understand why certain things were happening.
Q. Have you been involved in any other awareness efforts?
A. On Facebook [an online social networking site], I made this Cause back when the Cause application started. I called it Open Doors for Fibromyalgia and, if anyone donates, the benefits go to the NFA. We have over 2,100 members now.
Q. You have a demanding schedule with advanced placement courses and extracurricular activities. What is the key to your success in managing school and your fibromyalgia symptoms?
A. I had a very hard time for a while. The end of last year, I started really focusing on doing things I wanted to do, but also taking into account and listening to what’s going on in my body and finding ways to solve that while still doing other things. Over the past two years, I’ve been trying to develop a successful treatment plan that has made me feel a lot better and able to do the things I did before I had fibromyalgia.
Q. What treatment options helped you?
A. I did physical therapy and acupuncture back-to-back in the same office, so the practitioners knew each other and were able to talk to each other about my treatment. Another thing that made a lot of difference: I stopped drinking caffeine. I didn’t drink coffee, but I used to drink a lot of caffeine sodas because I thought I needed more energy just to get through all the work. After I got past the withdrawal headaches, it made me feel so much better. I could focus more at school, and it made me sleep better.
Q. What approach do you find works best when dealing with teachers and school administrators?
A. Just to give them advance notice. I feel like if something goes wrong, and they don’t know about it ahead of time, they look at it as you’re just making excuses. I just have a short conversation with them. That way, they are aware if something does go wrong.