.png){kind=logo}
The Reasons May 12th is Fibromyalgia Awareness Day and Why it Matters
- Jun 4
- 5 min read
National Fibromyalgia Awareness Day: A Personal Journey
Today, May 12, marks National Fibromyalgia Awareness Day—a date that resonates deeply with me and millions of others walking this challenging path.
Why May 12th Matters
This day honors Florence Nightingale's birthday. Born in 1820, this brilliant pioneer created the foundation of modern nursing. According to her diary entries, Florence likely battled undiagnosed fibromyalgia for most of her adult life.
Doctors 200 years ago couldn't recognize fibromyalgia's signs and symptoms. Without a name or understanding, people suffered without knowing why they were constantly in pain, exhausted, and sick.
Today, two centuries later, approximately 160 million people worldwide share Florence's struggles, with 5 million in North America alone. (1, 2) I am one of them.
My Story: From Nurse to Patient
For 30 years, I've lived with fibromyalgia. Before my diagnosis, like Florence herself, I worked as a Registered Nurse, helping countless patients regain their health. Yet when it came to my own health condition, I couldn't help myself because I didn't know what was happening—and neither did my healthcare providers.
It took 20 years and a complete collapse of my health to finally receive a fibromyalgia diagnosis. During those precious years raising my children, I fought an invisible enemy that did not respond to the conventional wisdom of health... a healthy diet, exercise, and stress management. But this invisible illness needed much more from than this.
On the outside, I looked fine, and my blood work results were normal—hence the reason fibromyalgia is called an invisible illness—it is undetectable with the naked eye as well as with any type of test.
But for years, I was chronically sick with upper respiratory infections, requiring antibiotics, as well as inflammatory conditions, and poor unrefreshing sleep. I underwent surgeries, and almost died once from a post-operative Staphyloccus Aureus infection in my blood (this is the flesh eating disease, and I acquired it on the surgical table!). Exhaustion and brain fog only became worse over time, and so did other several fibromyalgia symptoms. For those 20 years, doctors and specialists misdiagnosed me and prescribed treatments, but I never felt better—in fact, I only became worse.
I had a wonderful family doctor—caring, compassionate, and otherwise competent. My entire family was under his care, and we all loved and respected him! But without proper education about fibromyalgia, even the best physicians miss what they haven't been trained to see.
Had he been properly educated, an early diagnosis could have preserved my health and prevented the deterioration into additional chronic conditions like ME/CFS and multiple chemical & environmental sensitivity (MCS).
The Silent Suffering
Instead, I suffered in silence, feeling overwhelmed and isolated during what should have been joyful years as a mother, wife, daughter, friend, and career woman. As a competent health professional, I was also deeply humiliated that I couldn't improve my deteriorating health despite doing "everything right." Nothing made sense, because my nursing education hadn't been able to connect the seemingly illogical symptoms.
Only after my diagnosis in 2016 could I begin proper research of my own. Through trial and error, non-traditional education, and natural and complementary medicine, I finally connected those dots and made sense of this invisible, and sorely misunderstood illness.
Thanks to this knowledge and knowing how to take proper care of my own fibromyalgia, I finally reached and was declared in remission last year!
This means that while I still have fibromyalgia, and to this day, there is no cure that we know of my fibromyalgia no longer causes me serious issues. I no longer live with pain and persistent debilitating exhaustion. On the rare times when I might have pain, I know exactly what I did and how to nip it in the bud, so it never gets out of hand and doesn’t last long anymore. I have adapted my lifestyle over the years to being fibro-friendly, and I follow good habits that my chronic illness responds well to—that go beyond conventional wisdom of health.
From Patient to Advocate
As the saying goes: once a nurse, always a nurse! When I realized I could understand and improve my own fibromyalgia, I became a Certified Fibromyalgia Coach© because I wanted to help this community of fibromyalgia warriors. For the past 5 years, I've had the privilege of helping other women and men reclaim their health and lives again.
Yet it breaks my heart knowing that even in 2025, too many medical professionals continue to remain uninformed, while millions suffer needlessly, the way I did for decades, from delayed diagnosis and treatment.
The Scientific Disconnect
The frustration deepens when you consider science's extraordinary advancements. We've sent people to space, cracked the DNA code, cloned animals, developed organ regrowth through stem cell research, created artificial intelligence, and transformed communications technology. We have access to immense amounts of knowledge at any second of the day or night from our fingertips.
Modern medicine has revolutionized the diagnosis and treatment of countless conditions. Many cancers are even curable now. The invention of MRIs finally made conditions such as multiple sclerosis "visible", properly diagnosable, and treatable. Since the 1980s, MS patients are no longer dismissed as "hysterical" or left to suffer alone and in silence.
Yet fibromyalgia in 2025 remains what MS was until the 1980s—an invisible condition often met with skepticism, harsh judgment, and inadequate care, causing endless years of personal losses and grief, lost careers, lost friendships, too many children and husbands left to watch their mothers and partners suffer, and beautiful memories of cherished moments that will never have a chance to be made, forever lost opportunities—and lost lives.
Most tragically, this lack of understanding and support contributes to significantly higher suicide rates among fibromyalgia patients, who often feel they have nowhere to turn when both their bodies and the medical system fail them. (1) This is unacceptable - and I believe it should be unacceptable to anyone who understands the human cost.
A Call to Action
This is why May 12th matters so profoundly. It serves as an annual reminder of the urgent need for increased research funding to improve detection, diagnosis, and treatment of this devastating chronic illness.
I invite you to join me and the 160 million people worldwide, along with their families and loved ones, in honoring Florence Nightingale's legacy this May 12th.
For the rest of the year, please help us advocate for the research needed to lift the veil on fibromyalgia once and for all—to develop reliable diagnostic tools and effective early treatments that can prevent needless suffering for so many worldwide.
Together, I believe we can work to change the story for the next generation of fibromyalgia men, women, adolescents, and children. Will you join me? Please give to fibromyalgia research and support your local and national fibromyalgia organizations. Let us know that you understand and support the fibromyalgia community!
Sources:
Comentários