By: Phyllis Julian
Searching for a diagnosis for my chronic pain 43 years ago, at the age of 30, I was greeted by skepticism from doctors, smirks from acquaintances, and fears of a future full of nothing but pain and isolation. It would be years before medicine would find ways to help, and decades before society even recognized my shortcomings as an illness, not a lack of motivation, even though I excelled in educational and professional endeavors when I was fully functional.
For more than four decades, I kept my secret scourge from the world, especially from my employers. I would retreat to my car at lunch and cry, then reapply my makeup and march back into the office. When a coworker with fibromyalgia applied for disability, stirring up a controversial storm in the process, I swore her to secrecy for fear of retribution when it came to promotions and job security during downsizing.
I was eager to participate in a large study on society’s perception of fibromyalgia being conducted by a university in California, merely in the hopes that it would help someone else even if it did not ease my pain in my lifetime. The interview was comprehensive, intense, and emotional, as I learned that my interviewer was a fellow sufferer!
Upon retirement, I moved back to my hometown 100 miles away, trying to renew some bonds and to make new ones with the younger generations. Then I got the call from a sister asking if anyone in the family had a weird disorder called fibromyalgia–which she understandably could not even pronounce! My 10-year-old great-niece, who had already been suffering from intractable chronic pain for two years, was at Vanderbilt Medical Center being diagnosed. I was speechless! I had met only a few people in four decades who also had this plague, but had never heard of anyone in the same family having it, nor of a young child having it. Now it was a family affair!
And so OUR story began in 2016.
Despite our age gap of more than 50 years, my great-niece Kieana and I have bonded over the last few years over algebra and pain. The inadequacies of remote classes during the corona virus pandemic brought unique opportunities in solving algebra problems, including headaches and hysterical laughter. We truly began to understand the impact of “fibro fog” on our ability to concentrate! We began to support each other as best we could and still frequently exchange text messages, complete with tearful emojis on difficult days.
Kieana excels in academics and pursues many other activities, including multiple bands and choirs, to mention a few. She has won the community service award at her school, is a regular blood donor, and volunteers in various roles in the county youth court. There is little room for pain in this girl’s schedule! This means that she suffers, manages, and copes as best she can in her teen years when pain should not be on her agenda at all.
With documentation from Vanderbilt University Medical Center doctors, teachers became aware of her diagnosis and began making allowances for completion of assignments, which was very different from the attitudes shown in the decades I spent in isolation and secrecy. As junior class president and an officer in the National Honor Society, she proposed a fibromyalgia awareness day for the NHS yearly fundraising event. Of all the proposals submitted, hers was adopted. With the onslaught of purple ribbons and banners during the day-long affair, all the students learned why she sometimes had erratic schedules and that she was not simply an attention-seeker but was struggling to cope with an illness! Proceeds from the event were donated to the National Fibromyalgia Association.
During all of this, I continuously marvel at how the world has changed, but realize how far it has yet to go. I am proud of Kieana for not only coping and living with fibromyalgia at such a young age, but for actively trying to help others! Maybe as she works her way through next year as senior class president, she will find new ways to change society’s perception of this challenge and ways to help others who suffer. Where I once saw only isolation and suffering, I now see hope as her generation leads us toward the future with new perceptions and attitudes! Fibromyalgia does not need to control your life!
