This past Monday on the blog, Emile shared about her fibromyalgia and what being a part of the PatientsLikeMe Team of Advisors means to her, including how she hopes to help doctors understand that patients need to be treated as individuals, rather than just disease names. Today, we’re featuring Karla. She’s also a member of the Team of Advisors living with fibromyalgia as well. Read below to learn Karla’s views on patient-centeredness, open communication and healthcare in a rural community.
About Karla (aka kam-turtle)
Karla refers to herself as a Southern Gram, who tries not to let her fibromyalgia get in the way of having fun with her grandkids. Karla served as president of a community college prior to retiring from full-time employment in 2010. She has led volunteer boards and fundraising groups, worked in public relations and advertising, and actively worked in a variety of roles in her church. She continues to work part-time as a grant writer, researcher, and owner of a chicken farm where she has a rooster named Handsome. 🙂
After spending a long time finding treatments that worked for her, Karla is passionate about helping others shorten the time between diagnosis and condition management, and she would like there to be better understanding that fibromyalgia is not a ‘one-size-fits-all’ condition.
Karla’s view of patient-centeredness
She believes patient-centered healthcare involves open communication between healthcare providers and the patient: “it should be an active and ongoing process to evolve the patient’s care toward results to create a more productive and comfortable lifestyle. It is a two-way communication stream based on mutual respect.”
Karla on being part of the Team of Advisors
Being a part of the PatientsLikeMe Team of Advisors is very humbling but also refreshing to my soul. At times when my illness is at its worst, I have always hoped my affliction could at least somehow benefit someone else, somewhere, even in the future. That is actually happening with the opportunity to be on the Team of Advisors. Like me, each team member is willing to share freely and openly in hopes of making the future better for others. It is so humbling to represent patients from so many walks of life and bring hope for a brighter tomorrow. The work PatientsLikeMe and the advisors have been doing can truly change the way health care functions.
Karla’s experience seeking care for fibro in a rural community
A decade ago, fibromyalgia was a foreign term in my rural community, even to me. Doctors dismissed me as stressed, depressed and overweight. Employers openly joked that people with chronic fatigue syndrome, bipolar and other hidden illnesses were lazy. One doctor said I had a ‘bucket condition’ or unknown problem. After two hospital stays, XRAYS, MRIs, CAT scans and three or four doctors later, I confided in a nurse practitioner who knew me. She knew me before I had spiraled down into a life of pain and she knew I was not faking. She suggested a condition called fibromyalgia and advised seeing a rheumatologist in a regional area. There I received the diagnosis of fibromyalgia. I was devastated and utterly embarrassed. I didn’t want to suffer the ridicule from the uninformed public. When I was too sick to work, I would call in but if I had a doctor appointment, I would generally take vacation time so no one at work would know I was traveling to the rheumatologist.
I desperately wanted to learn about fibromyalgia to see if there was a cure or at least proven ways to manage the pain and fatigue. Eventually I had to give up my career and focus on my health. My family became educated about the condition and they understood my situation. So, then I began to own my situation and share my story. Amazingly, as word got out, many neighbors in my area contacted me to share similar frustrations. Healthcare in rural areas is in short supply, doctors are overloaded, hospitals are money-making machines and patients are deliberately kept uninformed. I firmly believe if not for the concern and care of one nurse practitioner who knew me personally, I might still be switching from prescription to prescription with no answers.
Unfortunately, ten years later, fibromyalgia is still very misunderstood. Based on my experience, I have learned to share about my fibromyalgia life, to advocate for hidden and chronic illness, to educate people about fibromyalgia and to encourage those on a personal journey to keep fibro from taking over their lives!
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