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The Reasons May 12th is Fibromyalgia Awareness Day and Why it Matte
- Jun 4
- 4 min read
Updated: Oct 2
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 dedicated pioneer created the foundation of modern nursing. But according to her diary entries, Florence likely battled undiagnosed fibromyalgia for most of her adult life.
Two hundred years ago, doctors couldn't recognize fibromyalgia, so people suffered in silence—constantly in pain, exhausted, and sick with no explanation.
Today, tragically little has changed. We may know the name "fibromyalgia," but that's where progress stops. Getting diagnosed remains painfully slow, and treatment even slower. It's like being handed a map to a destination that doesn't exist on anyone's GPS—doctors may have heard of fibromyalgia in passing but can't find it easily, leaving patients wandering in medical limbo with directions to nowhere.
The numbers tell the story: 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
I've been living with fibromyalgia for about 30 years. Before my diagnosis, like Florence, I worked as a Registered Nurse, helping patients regain their health. Yet when it came to my own health, neither I nor my healthcare providers seemed able to help me!
Twenty years. A complete health collapse. That's what it took to finally get my fibromyalgia diagnosis. Throughout those years—raising children, working full-time, caring for aging parents—we were looking in all the wrong places while I fought a secret war against an invisible enemy that conventional medicine couldn't detect or treat.
It felt like living in a peculiar kind of medical twilight zone or purgatory. I followed all the rules: healthy diet and regular exercise. Why wasn’t my body responding?
The Education Gap That Costs Lives
Looking back, I understand why my healthcare providers were so ill-equipped to help me. In my nursing school, we spent a mere five minutes on fibromyalgia. Today's nursing students are shockingly sometimes taught that fibromyalgia is a mental illness with no physiological basis! Even medical students typically receive less than one hour out of their years of education, learning about this physically debilitating condition! How can we expect proper diagnosis and treatment when healthcare professionals barely even seem to know about it?
Hidden in Plain Sight
On the outside, I looked fine, and my blood work results were normal. The doctors and specialists I saw never even thought of fibromyalgia as a possibility—no wonder we say fibromyalgia is an invisible illness!
No one was more motivated than I was to discover why I was always feeling so ill. As a healthcare professional myself, I desperately searched for answers, but even my own nursing education couldn't help me understand what was happening to my body. The very training that had equipped me to help others heal left me powerless to identify my own condition.
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.
The Scientific Disconnect
The frustration deepens when you consider science's extraordinary advancements. We've 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 women, men, 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!
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