Challenge + Gratitude
Fibromyalgia is an invisible and debilitating chronic illness, and it’s been a consistent thread woven into the story of my life across decades.
When I was first diagnosed, nearly 20 years ago, so little was understood about the disease. It was thought to be a disease “of the mind.” The reality, it is a dysfunction of the nervous system that fires pain signals irregularly, causing sufferers to feel pain when others do not. The stigma and shame I felt with this diagnosis, as if it was “all in my head” was nearly as debilitating as the dysfunction itself and likely intensified the severity of its impact on my overwrought system.
The emotional, mental and physical pain I’ve carried through the years is something I rarely talk about. But this is Fibromyalgia Awareness Month and because understanding of the disease is still so nascent, I want to do my part in spreading awareness. Especially for the sufferers out there.
Despite feeling ALL of these symptoms, sometimes at a 5 or 6 and sometimes at an 11 on a 10-point scale, I didn’t allow myself to fully embrace the diagnosis until this past year. (Listing here for true awareness and to help anyone else out there find answers they might not have.)
Chronic, widespread pain—aching, burning, or throbbing—throughout the body or at multiple sites. Often felt in the arms, legs, head, chest, abdomen, back, and butt as
Laying in bed feeling like my whole body was on fire.
Overwhelming feeling of being tired.
Trouble sleeping, waking up with searing pain flashes.
Muscle and joint stiffness.
Tenderness to touch.
Numbness or tingling in the arms and legs.
Problems with concentrating, thinking clearly, and memory…“fibro fog”
Heightened sensitivity to light, noise, odors, and temperature.
Fainting
Digestive issues mirroring IBD
Severe TMJ (which goes hand in hand with fibromyalgia and has it’s own set of symptoms and maladies.)
There were a number of years where I was certain I was crazy or thought I might be dying–and some of the people in my life dismissed this pain.
Committing myself to healing my emotional past, including having my reality dismissed, led me to what I believe is a strong link in putting my fibromyalgia symptoms in remission. The story of my sense of self, and of certain relationships, are woven into the physical manifestations of fibromyalgia. It is all connected.
Over a business lunch back in the fall, I was just allowing myself to start sharing that I have fibromyalgia. The person I was meeting with said, “That’s a disability!” I was moved instantly and wanted to burst open with sobs but I held back tears. I’d never allowed myself to embrace the diagnosis and so I never acknowledged how hard my journey with this condition has been. I felt a great deal of sympathy and compassion for myself that I’d never given myself before. That self-compassion fueled the past five months of leaning into treatment from all angles.
Since fully unraveling who I was and looking at the core of my story in therapy–along with various other treatments across mind, body and spirit–including acupuncture, chiropractic and prosthetic TMJ treatment, Neurofeedback therapy, western medicine, holistic medicine, art therapy--I’m proud to say I’ve never felt better.
Despite the hardship of living with this dis-ease that has been one of the greatest challenges of my life, it has also been one of the greatest gifts. And that’s the beautiful thing about the threads that weave the stories of our life. No matter the color they bring, they add a texture, pattern and substance that makes something beautiful in the end.
