Leader Again Pain Spotlight: Sharon Waldrop
Sharon is the Vice President of Education for the National Fibromyalgia & Chronic Pain Association (NFMCPA) and the Founder and President of the Fibromyalgia Association of Michigan (FAM). Founded in 1997--just one year after Sharon was diagnosed with FM--FAM grew out of the Fibromyalgia Support & Education Group at St. John Macomb Oakland Hospital in Warren (Detroit suburb), Michigan. Originally developed under the guidance of the Arthritis Foundation, in 2003 she incorporated the group into the non-profit volunteer-run organization FAM. Sharon has a degree in Public Relations with a public relations/marketing career spanning over 20 years.
Sharon lives in Royal Oak, Michigan, and enjoys spending time with her husband Mark and two boys who are eight and ten years old. Their favorite activity together is traveling.
Jan Chambers interviewed Sharon Waldrop.
Jan: When did you become an LAP?
Sharon: I became a Leader Against Pain in 2007. It was exciting to join a vibrant community of fellow support group leaders and activists from around the globe. The following year I became the Co-Director and charter member of the Leaders Against Pain Coalition (now called Network). Currently I serve as an advisor to the Leaders Against Pain Network.
Jan: Can you tell us a little about when you were diagnosed?
Sharon: I was diagnosed in 1996 at the age of 24, and I was angry. I went from being very active - rollerblading 6 miles a day, biking 10 miles a day or working out in a gym 6 days a week to being bedridden. I was working in my first job after graduating from Wayne State University in Detroit with a degree in Public Relations. In my job, I worked my way up to Marketing Manager in a few short months and was developing the company's marketing and public relations department. I traveled across the country to represent the company at trade shows. This all came to a screeching halt, as I could not even walk from my bedroom to the kitchen without needing a nap. I literally would lie on the kitchen floor until I could move again. The steps from my kitchen to bedroom were probably no more than 30.
I was blessed, and still am, to have a wonderful support system. My parents and friends were hugely supportive. Very little was known about fibromyalgia when I was diagnosed by a rheumatologist who said, "You have fibromyalgia, and you are just going to have to learn how to live with it." He gave me some flyers from the Arthritis Foundation Michigan Chapter, a prescription for an antidepressant and walked out of the room. Sadly, that was his whole response to my treatment plan. He did not even share that the antidepressant was for pain and sleep not because I was depressed or, for lack of a better word, crazy.
I thought I would never get married or have children, but I am happy to say I proved myself wrong.
Jan: Why did you begin your work in patient advocacy?
Sharon: As I just shared, I was angry when I was diagnosed. This invisible illness is so challenging and misunderstood. I decided to channel that emotion into fighting for a better tomorrow for everyone affected by FM, not just myself. I believe we are all connected. So in helping others, I would benefit, too.
Also, one of the biggest realizations I experienced after being diagnosed with FM is the fact that there isn't some magical person or groups of people with endless magical funding working who:
1) Makes sure the illness is recognized;
2) Receives research funding; or
3) Makes sure that appropriate care exists.
I am happy to say that there have been numerous patient and physician healthcare organizations over the years that have worked on these issues, but they can't do it alone or without funding. It is up to our community to support one another to create this change. This type of work is extremely difficult, and often the work is done on a volunteer basis.
This type of work takes time and support. An excellent example is the breast cancer movement and how these days you can't go into a store without seeing some product in pink for the cause. This did not happen over night. Determined activists worked hard for many years to become so visible. This same type of work needs to be done for fibromyalgia and related illnesses. These invisible illnesses are still so misunderstood and grossly underrepresented when it comes to research dollars.
As FM is 8 times as likely to occur within a family I am very concerned about the future of FM research, treatments and policies affecting our access to care. I urge everyone affected by the condition to get involved with fibromyalgia advocacy in some way. Whether it's donating a dollar (or more) to an advocacy organization like the NFMCPA so they can continue to advocate on your behalf, or starting a support group, or participating in an awareness event in your community, find a way to get involved. If we all pull together, I am confident that the future is bright for us and our family, friends and neighbors who will be diagnosed in the future. There are easily more than 10 million Americans with fibromyalgia. Imagine if everyone contributed just one dollar! Ten million dollars a year would go a long way to aiding our researchers and funding policy initiatives that help us receive appropriate and accessible treatments.
Jan: Can you tell us about Michigan Fibromyalgia Awareness Day?
Sharon: On May 10, the Fibromyalgia Association of Michigan will be hosting its 13th annual Michigan Fibromyalgia Awarebess Day in affiliation with the NFMCPA. This year's program is a conference aimed at people affected by FM and their loved ones, but it will also provide very useful information for healthcare providers, too. Dr. Hal Blatman, MD, Past President of the American Holistic Medical Association and an internationally recognized specialist in treating Myofascial pain will provide new information on fibromyalgia and why the things people are trying have not worked better. He also will present the impact of foods on pain and fatigue. A panel of patients and a spouse will share how they are overcoming the challenges of living with FM and chronic illness. I am pleased to say the panel is comprised of fellow Leaders Against Pain members Tom Hintz, John (BJ) and Sabrina Numann. They are a wealth of information and are founders of support groups in their states of Wisconsin and Indiana, respectively. For more information including tickets and lodging information please visit our website MiFibromyalgia.org and like us on Facebook.com/mifibromyalgia for updates.
Jan: What would you say to our readers who are struggling with a diagnosis and treatment?
Sharon: Don't give up. I know it is hard to face the challenges that FM brings and then have to find a great healthcare team, too, while balancing family, job and social issues. There are good treatment options, but it takes time and patience to find what will be the winning combination that works for you. There are great health care professionals who will help you, but it may take time and several visits with other practitioners first. It’s like dating – you may have to kiss a few frogs first. Join a Support Group! Connecting with others facing the same challenges can be empowering, comforting and a great resource for referrals. Remember no two groups or doctors are alike. Do not write one off due to a bad experience with another. Stay connected to organizations that provide support and education like the NFMCPA and the Fibromyalgia Association of Michigan (the NFMCPA Michigan Affiliate). Best wishes for a more comfortable tomorrow!