The Invisible Pain of Fibromyalgia: My Journey
Hello lovely readers!
I’m back again with my next blog post and in honor of Fibromyalgia Awareness Day this past Sunday I am jumping into a personal health topic of mine and many others: an autoimmune condition called fibromyalgia.
Misconstrued and underestimated, fibromyalgia is a complex chronic pain condition affecting about 4 million people in the United States & possibly 2-8% of the world's population.
I am one of those people. I am forced to live in a world where multiple doctors have pushed medication on me and refused to listen to my needs. Why? Because fibromyalgia is often extremely difficult to diagnose – to say nothing of actually treating it. This enigmatic disorder manifests through a myriad of symptoms, challenging both patients and healthcare professionals in a frustrating cycle of misdiagnosis and mismanagement.
Characterized by widespread musculoskeletal pain, all-over stiffness, joint stiffness, persistent fatigue, sleep disturbances, and cognitive impairment, fibromyalgia significantly impairs quality of life. Symptoms are terrifying --including debilitating pain in the face or jaw, making eating a chore. digestive problems, such as abdominal pain, bloating, constipation, and even irritable bowel syndrome (also known as IBS).
The exact cause remains elusive, but research points towards a combination of genetic, environmental, and neurobiological factors. Some studies suggest abnormalities in pain processing pathways and neurotransmitter dysregulation contribute to the hypersensitivity and widespread pain experienced by fibromyalgia patients. Some studies have also pointed to neuroinflammation for the main cause of fibromyalgia. However, there is no proven explanation of what truly causes fibromyalgia.
Beyond the physical toll, fibromyalgia inflicts emotional distress and social isolation before & after the diagnostic process. As it tends to take anymore from 5+ years to get diagnosed & most medical practitioners diminish the condition.
I have experienced this firsthand. It's something no one should have to go through.
My diagnosis process was an irritating, confusing, soul-crushing, terrifying mess. Even as a young child I suffered from intestinal issues. Neither me nor my family knew how serious my medical condition would become in the future. After living through the Route 91 mass shooting in Las Vegas, the mental and physical symptoms began almost immediately. As the years passed, my symptoms became worse and worse.
It started with Temporomandibular joint dysfunction, a hard to say condition that makes it hard to say anything. Usually abbreviated to TMJ, it causes head pain, neck pain, and severe pain in the jaw that makes it hard to speak or eat. Some time passed – now I was suffering from excruciating IBS issues, week long migraines, and debilitating fatigue. It got even worse when the cognitive symptoms started popping up.
My life spiraled into an endless vortex of cognitive short term memory loss, emergency room visits, specialist doctor appointments, and multiple tests I had to take multiple times a year. Every. Single. Year.
I went to multiple doctors for 4 years straight and seeing multiple doctors it took one doctor to look at my chart and believe my symptoms to refer me to see a rheumatologist. Even when autoimmune conditions ran heavily throughout my family history.
Many people have experienced emotional distress from medical gaslighting for an "Invisible illness" which tends to be dismissed and takes multiple years to be diagnosed. Which causes even more emotional distress to someone already going through this process of physical daily pain & mental distress from that pain.
Daniel Clauw, a leading expert in chronic pain, emphasizes, "Fibromyalgia is a real, complex medical disorder. It is not just in people's heads, and it is not simply 'pain.' It is a chronic illness that requires recognition, understanding, and proper management."
Despite advancements, the journey towards spotlighting fibromyalgia's awareness persists. In the medical community, workplace, and media many doubt that fibromyalgia even exists. Some doctors refuse to diagnose someone with fibromyalgia or even treat them. They leave autoimmune patients, especially women, with no medication or help for this debilitating condition.
But celebrities like Lady Gaga, Morgan Freeman, and countless others have taken a stand for people who have been gaslighted again and again about the existence of fibromyalgia – a disease whose impact they can literally feel.
In 2017, Gaga released a Netflix documentary Five Foot Two. The musical genius shed light on living with fibromyalgia, struggling with mental health issues, and achieving her dreams despite it all.
She has strong words for those still ignorant enough to doubt fibromyalgia's existence. “I get so irritated with people who don't believe fibromyalgia is real," Gaga told Vogue in 2018.
“People need to be more compassionate. Chronic pain is no joke. And it’s every day waking up not knowing how you’re going to feel.” This is what fibromyalgia is. It is not imaginary. It is real pain that debilitates people from working, living a regular life, and being as active as they wish to be every day.
Research continues to unravel its complexities, offering hope for improved diagnostic methods and targeted therapies. In our quest for solutions, empathy and support in the medical community are indispensable in order to find the correct treatment route.
As we fight for a more compassionate future for the autoimmune, it's important to understand that awareness alone means nothing. Awareness is the beginning. Awareness is the first step; a call to action that demands you actually do something.
Let’s stand with those battling fibromyalgia. Let’s advocate for greater awareness, greater research, and more compassion in America’s healthcare system. Let’s fight to make the world a safer place for the autoimmune.
