Fibromyalgia and finding my purpose
State: South Carolina
Congressional District: SC03
Chronic Pain, Mental Health, Neurological Disease
Issues and Challenges
Francine has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Mental Health Access, Rare / Underserved Disease, Surprise Billing, Disability, Discrimination (nonmedical), Gaslighting, Invisible Illness, Job Insecurity / Loss, Medical Discrimination, Social Security Disability, Transparency in Health Care, Underserved Community
In May of 2013 I laid my heavy head down on my work desk. I knew something was definitely wrong because I couldn’t lift it up. My neck pain was excruciating and it radiated down my left arm with a tingling sensation. After much verbal support from a coworker, I was able to sit upright. Two months later I underwent cervical spine surgery to repair crushed bones in my neck.
Seven years prior (from 2007 till then), I was always in pain, had chronic fatigue, and depression due to unexplained chronic pain. I commuted to work 2 hours each way for six years. I had a few car accidents that didn’t seem very serious, I was in and out of physical therapy and chiropractic care, but nothing helped. I went to countless doctors who found nothing wrong on X-rays or MRIs and a few stated my all over body pain was in my head.
In 2010 I was finally diagnosed with Fibromyalgia, degenerative disc disease and lumbar radiculopathy. Having a diagnosis was a relief, just because I knew I wasn’t crazy.
After surgery my life changed forever and the body pain I experienced upon waking with a plate and screws placed in my neck, was the worst pain imaginable. The surgeon dismissed me and told me to go back to work, there was nothing he could do, and I should go see my pain doctor. After surgery nothing was ever the same.
I had no one to fight for me. In experiencing a Fibromyalgia Flare (heightened debilitating pain all over) it’s extremely hard to think logically or fight for your rights. There was much anger as to why this is happening to me.
When diagnosed with this chronic condition, there is usually so much loss. For example, I lost everything; my dream home, my career as a grants administrator, my cars, friends and spouse. My world turned upside down in a matter of months.
I became like a zombie from being on fourteen different medications because the doctors were treating each symptom differently and not as a whole. My 25 year old daughter became my caregiver, and she did it well.
After I lost my will to live as many of us battle depression while in chronic pain, I knew I had to fight for myself to receive the care and support I deserved. I started sharing my testimony to whoever would listen and I gained a desire to live in order to help inspire someone else living with Fibromyalgia with no support system.
This turning point in my life made me well aware that no one understood this illness and if I wanted to see change in how I was being treated by family, friends and medical professionals, then I needed to learn all I could in helping them understand this pain was real. I knew there had to be others experiencing the exact same thing.
During these fibromyalgia flares we need resources to better serve this community. We are mothers, fathers, husbands and wives, teachers, government officials, essential workers and voters. The silence and stigma surrounding this chronic pain condition needs real and honest conversations to elevate the deep rooted stigma to better understand the disabling aspects it has on over 10 million men, women and young adults. That number will continue to grow and affect someone we all know and/or within our families.
Fibromyalgia is causing lifetime disability, with the use of wheelchairs, walkers and canes. For me it started fifteen years ago, and as it slowly progressed, it has never left. It’s always present and I’m always present because of pain.
As a fibromyalgia patient I am affected greatly with doing daily normal activities such as walking, light chores, showering, cooking, standing and sleeping. Even getting in and out of a car more than once can cause excruciating pain.
Through advocacy my wish is to demystify Fibromyalgia as a verifiable disabling condition on its own.
My Motivation and Inspiration
I am writing this story to inspire you to learn more about the effects of fibromyalgia, it’s many symptoms and the financial burden and loss it is causing families, the workplace and the medical community.
As an advocate for Fibromyalgia I am finding purpose on my good days to devote time and energy in bringing awareness to legislators; to allocate additional funding for testing, research and clinical trials.