Fibromyalgia: fighting for the small guy
Latoya
State: Alabama
Congressional District: AL02
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Diseases
Chronic Pain, Gastrointestinal Disease, Migraine
Issues and Challenges
Latoya has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Transportation, Copay Accumulator, Disability, Financial Assistance, Gaslighting, Invisible Illness, Medical Devices
My Story
My fight with fibromyalgia is going into its 10 years now. My diagnosis was in 2016 after a series of medical traumas. Multiple surgeries to remove massive tumors which once removed left what the doctors called collateral damage. They left me with a bruised bladder and herniated L4& L5. These events have left me with minimal mobility, which has caused me to gain a lot of weight. This leaves me with what I fear fatally combines bias-based barriers. I am a black woman who is overweight and experiencing extreme pain. Being overweight, I am perceived as lazy and unmotivated, which is the farthest thing from my personality. Prior to my illness, I was a thriving pastry chef working in my dream job as head pastry chef at pappadoux seafood.
The onset of my illness caused me to need to move in with my parents. Fibromyalgia has turned my life and my family's life upside down. Between the lack of current education available to the doctors to the nonexistence of treatment plans for fibromyalgia. Now, with the loss of access to a rheumatologist as a medical avenue, we have even fewer options for care. Navigating this diagnosis is a minefield. Those of us with crossover conditions encounter everything from doctors refusing to see us because of assuming we are only drug-seeking, all the way to doctors prescribing anti-depressants as bandaids for symptom management and dismissing us by saying is all in our heads. It is extremely rare to find a doctor who is willing to believe us but even if we were to find that diamond in the ruff; they are still limited in what they can prescribe to us because there is no reference guide or educational resources for them to pick from.
The treatments and therapies that are available, such as physical therapy and various repurposed drugs, are most often than not either barely covered by insurance or not covered at all. They left us to either pay out of pocket or not get the treatment at all which then only adds to the list of medical declines we endure.
This brings up another area where fibromyalgia patients have trouble. This diagnosis is not universally listed as a disability. We categorized it as a muscle-skeptical condition, but in reality, the pain and dysfunction originate from our neurological system. Therefore, more research is needed so it can place us in the proper category. Once we have this fibromyalgia would be able to be classified as a disability which would give us the ability to have a way to better support our families while we work to relieve our symptoms. As the classification stands now it only brings additional stress both to the patient and the system by constantly denying fibromyalgia claims. Most times, we have to wait until our mobility and morbidity become so degraded that we have little to no options for care where our independence and dignity are intact.
My Motivation and Inspiration
I advocate for the small guy, the one who is lacking resources. I’m a small business owner and an advocate for small business owners with chronic illnesses. I help build up their skills and confidence so that they can make an impact on their communities by supporting each other with knowledge-sharing sessions and networking events. We all have our own unique challenges in this world, but from starting a new venture or growing your existing one, not all people have access to the tools they need to succeed. We are shining the light back on the chronic pain/invisible illness community. For too long, we have been in the shadows or lumped in with other illness groups. We deserve our own stage and our own day!
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