Congratulations to Jan Chambers for winning ProHealth's 2015 Fibromyalgia Advocate of the Year Award! The award is given to an advocate who has dedicated him- or herself to furthering the interests of the fibromyalgia community, and who has made a significant impact on public awareness of the disease. ProHealth Advocates of the Year receive a ProHealth gift certificate of $500 and a $1,000 donation is made to the charity of the recipient's choice.
Jan Favero Chambers has been active in fibromyalgia and chronic pain advocacy for nearly a decade. The year after she was diagnosed, she attended the Women’s Campaign School at Yale University and was immersed in training with campaign managers for the top presidential and Congressional candidates of 2008. This marked the beginning of her advocacy efforts.
In 2008, Jan founded the Center for Understanding, Research & Education of Fibromyalgia (CURE FM), which was renamed the National Fibromyalgia & Chronic Pain Association (NFMCPA) in 2010. The NFMCPA's mission is "to unite patients, policy makers, and healthcare, medical and scientific communities to transform lives through visionary support, advocacy, research and education of fibromyalgia and chronic pain illnesses.”
Jan was one of 80 national experts chosen to develop the National Pain Strategy and served on the Service and Delivery Task Force. She was appointed by Senator Orrin Hatch to work with the Pain Care Forum, a professional organization for pain stakeholders nationwide. The NFMCPA is the only member organization in the Pain Care Forum representing fibromyalgia, a responsibility Jan takes very seriously.
We asked Jan about her experiences with fibromyalgia and her advocacy work:
When were you diagnosed with fibromyalgia?
When did you first notice your symptoms?
Unusual sensory events with light, sound, and taste as well as frequent migraines were part of my life from about age twelve. Now I know that the life-altering metabolic syndrome and polycystic ovarian disease were overlapping conditions. However, on December 22, 2005, at 11:35 AM in a hospital surgical recovery room, I awoke to horrific pains all over my body. The nurse kept saying they were the effects of the anesthesia and would wear off. I kept focusing on the clock to remind myself to breathe. When serious pain seizes your brain and body, it’s natural to hold your breath. That can make the pain worse.
How has fibromyalgia changed your life?
I’ve grown personally to make wiser choices, understand relationships better, value time more, appreciate life, and have more understanding and respect for challenges that people face and often overcome.
What helps you most to manage your FM symptoms?
My personal tool bag has a combination of self-helps. Good posture, restorative sleep, gentle stretching with strengthening exercise, home physical therapy, appropriate supplements and vitamins, gluten and dairy free diet, staying hydrated, creating a calm physical environment, a consistent heel height on all of my shoes, a heating pad, absorbing nature, lavender and eucalyptus aromatherapy, energy work, scented epsom bath salts, and a variety of pillows and pads. I’ve learned to listen to my body. When a flare is coming on, I eliminate all sensory input and soothe myself. I’m blessed with a wonderful best friend who reminds me often to pay attention to my intuition.
What have been the most difficult changes you've had to make in managing your FM symptoms?
Giving up eating nightshade vegetables, which I adore, but now they cause allodynia on my back as well as my joints to swell and ache. I used to make a delicious French dish, ratatouille, that has eggplant, tomatoes, and peppers. I’m Italian and Irish, so tomatoes and potatoes are what I grew up with. Second hardest is pacing and sticking to a daily schedule. I love to work during the quiet night hours, but I have frequent early morning meetings. I get so engrossed in my work, that it’s hard for me to stop when it’s time to eat or go to bed.
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You’re an active advocate. What issues most concern you?
First is the appalling disdain and increasing stigmatization towards people with chronic pain illnesses by politicians, policymakers, and the public. Secondly, access to appropriate healthcare is denied because 1) insurance companies are profit-making companies who look at their own data of most popular pain treatments rather than their outcomes; and 2) pain research has been held to only $.04/person annually because of politics at NIH. And third is the inaction of people with chronic pain when advocacy issues and calls to action are brought to their attention. When we go to Capitol Hill to advocate, we’re asked, “Why haven’t I heard about this from my constituents?”
What surprises you?
I was quite surprised to receive ProHealth's very prestigious honor award for advocacy. I have high regard for Rich Carson and his strong team of talented and joyful educators. ProHealth's community leadership encourages and nurtures respectful relationships that brighten one's day. Accepting this award on behalf of every fibromyalgia advocate is an honor. The NFMCPA joined forces with many Leaders Against Pain and community volunteers to launch "Together Walks" during May across the nation in honor of May 12th Fibromyalgia Awareness Day. Together we make a difference in making fibromyalgia visible! Please join in the heartfelt spirit of this meaningful advocacy award by supporting a Together Walk or one of the other wonderful events by local organizers that the NFMCPA is thrilled to promote on its website at fmcpaware.org.
Reflecting on daily life, I am surprised about how much ergonomic adaptation I use in my home and office to live a good quality of life. Often when I’m traveling, I miss those and feel pains and symptoms return. My body is so hypersensitive to temperature changes, drafts of air, hard chairs, fluorescent lights, and fragrances. I’m exposed to all of those in my work, so I try to keep the central nervous system windup aspect of FM dialed down by wearing scarves and layers of clothing, listening to recorded nature sounds, and avoiding gluten. I sit on padded cushions and sleep on a gel mattress. When I forget that I have life-altering pain conditions, I am snapped back to reality when I feel stiff after sitting for more than 20 minutes. I try not to get overwhelmed by the additional responsibilities of taking preventive and maintenance actions.
What and who inspires you?
Scientific meetings, beaches, the Palace of Versailles, Caroline Myss
Why do you like your work?
Interacting with thought leaders calls out the best in me. I value the personal growth that comes from the challenges and triumphs of living a meaningful life with fibromyalgia and chronic pain conditions. Being in pursuit of becoming a better version of myself, I am humbled by the privilege of sharing journeys alongside other people with life-altering pain conditions.
How has being the president and founder of the NFMCPA changed your life?
Different interests and concerns now engage my attention and efforts. I’ve always loved people and cared about them. Now I am acutely aware of how policies and stigmatizations affect vulnerable populations. Starting a humanitarian-based, advocacy organization and leading collaborative, national efforts required me to quickly focus on what mattered most in my heart. I don’t leave the job at 5 p.m. and go on to separate, personal activities. When you are the founder and president, there is no separation between who you are and what you do. I stand for and do what I believe in. We pay close attention to community needs and preferences to formulate our advocacy and service programs.
An avid reader, I enjoy learning about new concepts. Applying progressive tools to the National Fibromyalgia & Chronic Pain Association gives me great joy. I am a volunteer leader, and I absolutely cherish working with authentic people who give the best of themselves in serving others.
What lessons that come from living with a chronic condition do you most value?
I have learned that emotions are chemical events. While disappointment, anguish, and hurt cannot be avoided while truly engaging in life, I appreciate knowing how to bring the emotions of joy, love, and peace into my life. By changing my thoughts and actions, I can change how I feel emotionally. Learning emotional intelligence has been a crucial step for regaining dignity and self-management after being dismissed by the medical community.
How have you changed in the 10 years since your diagnosis?
I look more towards holistic and naturopathic treatments. Greater respect for how our emotional and spiritual wellness affects our quality of life affects my choices. Compliments mean more to me. I trust my intuition more. And I appreciate that we all are experts on fibromyalgia and our chronic pain conditions because we live with them every day.