Hello. It’s very nice to be here with you today. Thank you for visiting the website and for your interest in learning my thoughts and vision of the future.
A few years ago I learned about the National Fibromyalgia Association’s International Leaders Against Pain program. To me, it seemed as if the NFA was inviting the whole planet to a party. How amazing to touch people’s lives everywhere through the Internet. Now I find myself in a similar position and marvel at the depth of connection and purpose I feel towards you. Feelings that surprised me but drove me to travel over 350,000 miles since mid-2009 to learn more about our community. Self-funded and with the full support of my dear husband, I started out on a journey to understand fibromyalgia and chronic pain illness and how patients connect to the world. I attended conferences, meetings, and training programs, met with researchers and legislators, talked with funding institutions, studied treatments at clinics, observed alternative and complementary methods, talked with support group leaders, went to spiritual retreats and holy places, explored cultural beliefs and customs, and absorbed the beauty, magnificence, and excellence that are results of man’s dedicated efforts. Underlying all was a reverence and deep appreciation for the source of life.
Our lives are full of purposes, and upon reflection I see influences that shaped my life. At age 21, I worked in the Philosophy Department at Brigham Young University where I typed a dissertation with the topic “Can One Be in Community with Oneself?” Understanding that question took many years for me; answering that question became a lifetime quest. How delightful to me that my work here and now is about community. I understand community–for oneself and for groups. While raising our family, I recognized and valued our home as a nurturing sanctuary for each member. It was always a work in progress, but I believed in leadership in the home, supporting each family member’s efforts to develop their interests, and encouraging community to provide a sense of belonging and contributing to common purposes.
Life has always been interesting to me. Learning is one of my passions, from textiles to quantum physics with home canning and the discussion of the cultural impact of dynamic changes to the English language in between. People fascinate me. What makes them tick? What basic human rights are or should be agreed upon throughout the world? Does suicidal depression feel similar to everyone? Does observing facial expressions evoke the same understanding in all cultures?
Our realities are our own creations. My reality is not your reality, and vice-versa. However, we are part of each other in the community of shared experiences. Through genuine dialogue we find commonalities and understand different opinions. One expands as a person by being present and truly listening to someone else. For example, brainstorming is a fun tool for good discussion. I’m interested in co-creating a strong community that utilizes and supports the talents and resources of its members.
The purpose of the National Fibromyalgia & Chronic Pain Association is to unite our voices to address the difficulties imposed upon us. Mamie Eisenhower said, “No one can make you feel inferior without your consent.” I would add to that “The end of the story is not written–we cannot stand by and let someone else author our lives.” My dear friends, my heart is full of appreciation for the strong and purposeful feelings you hold. We stand at a crossroads for fibromyalgia and overlapping conditions. Our future is being shaped without our input. I cannot accept that. You should not accept that. As a united community we lead out and influence the decisions that have direct impact on the quality of our lives.
Do you know--that the U.S. Congress declared 2000-2010 as the decade of pain control? That pain research funding is, at this moment, being decided upon by the Institute of Medicine to guide the National Institutes of Health? That fibromyalgia researchers are retiring and few young researchers are replacing them? That each state Drug Use & Review committee regularly sets the kind and amount and manner of medication its Medicaid constituents receive? That some doctors have signs in their windows that say “If you are here about pain, please go elsewhere”? That people with chronic pain share a cycle symptom cycle that can be broken? That people do find resolution to fibromyalgia and overlapping condition symptoms? That fibromyalgia is under growing siege to be disregarded as an accepted illness–despite the science that validates it–because insurance companies regulate health care coverage? That legislative state resolutions can be used as strong guideline discussions with decision-makers who affect our access to care?
This is a shortened list of the concerns our community is experiencing. As you read this, thought leaders and decision-makers are trying to formulate a “process” for handling chronic pain. A “process” is a protocol employed to treat acute (short-term) illnesses such as a broken arm. The art of medicine–a physician advising the patient on a course of action–is being reduced to a corporate mandate. Of our fibromyalgia and overlapping conditions community, few members I know would benefit from the process model.
After attending the National Fibromyalgia Association’s Leaders Against Pain training program in June of 2007, I understood what I could do with my many years of considering the meaning of community. In October 2007, I created the Northern Utah Fibromyalgia Connection (NUFC) because I was not well and wanted to learn from others. There was a need in our area for a local community organization. After we got our feet under us, others in Utah contacted us and wanted to become part of a statewide organization. The NUFC was renamed to the Utah Fibromyalgia Association. As my health improved because I addressed the several individual co-existing illnesses and conditions, fibromyalgia symptoms were resolved over the next eighteen months. My compassion for others who suffer and do not have the resources, support, and understanding of their illness compelled me to step outside of my comfort zone to share knowledge and take action.
In June of 2008 I was invited to be a founding member of the National Fibromyalgia Association Leaders Coalition. As I studied how to develop a strong coalition and what the relevant issues are for fibromyalgia and overlapping conditions, it was readily apparent to me that a coalition structure could address some but not all of the issues. (I remain devoted to developing a representative coalition as an organized way for community members to work together to address common concerns.) In November 2008, I created CURE FM (the Center for Understanding, Research & Education of Fibromyalgia, a not for profit 501(c)(3) organization) because I recognized the huge gap between the science of fibromyalgia and patients. CURE FM is an umbrella organization for people to be involved in fundraising for research and adding their voice to benefit the fibromyalgia and chronic pain community.
Wanting to grow CURE FM, I felt strongly that more tools were needed in my tool belt. My husband and I decided that I needed to be exposed to as many relevant elements as possible. So began my purposeful travels. It started in New York City at the Foundation Center. With 30 years of experience in local and state politics, I applied to and was accepted to attend the Yale Law School Women’s Campaign School in July of 2009. This highly structured training and interaction with women from all over the world was engaging and piqued my desire to become a national thought leader.
Now 350,000 miles, and almost four years later, and the occasional uncomfortable bed , I am coalescing information from my travels. With my own experiences, and studying and learning from a variety of others, I understand the importance of uniting the fuller picture of life with fibromyalgia and chronic pain. Fibromyalgia is a unique illness, but overlapping conditions most often co-exist with fibromyalgia.
In December of 2010 I expanded CURE FM—to become the National Fibromyalgia & Chronic Pain Association (NFMCPA)--to welcome and incorporate the strong community programs from the NFA. Prior to the development of the NFMCPA, my work coincided with events over which I had no control outside my organizations. As the National Fibromyalgia Association is restructuring and focusing on its new mission, some of its valuable programs need to be carried forward. Awareness Day events, education, Leaders Against Pain (advocacy and support group training), and the Coalition are now part of the National Fibromyalgia & Chronic Pain Association. We are delighted to have them in our new home. I am passionate about creating a better quality of life for our community and forging new relationships. Sponsoring these programs in the National Fibromyalgia & Chronic Pain Association supports the original mission I began with: to facilitate bringing together community stakeholders and together influence the decisions that affect our personal lives. With the benefit of many conversations and experiences guiding me, I strongly believe that united we stand, divided we fall.
Please join with me to develop an excellent community that addresses and supports the needs of the fibromyalgia and chronic pain illness community.
Janet Favero Chambers, President
National Fibromyalgia & Chronic Pain Association