Voices Across America

A Complex Chronic Journey Sustained by Faith

Sarah

State: Alabama
Congressional District: AL01

Diseases

Chronic Pain, Immune Disease, Mental Health, Migraine, Neurological Disease, Rare Disease

Issues and Challenges

Sarah has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medicare / Medicaid Issues, Medical Records Access, Mental Health Access, Rare / Underserved Disease, Surprise Billing, Transportation, Abuse (Mental, Physical, Elder), Addiction / Substance Abuse, Disability, Financial Assistance, Gaslighting, Invisible Illness, Involuntary Hospitalization / Commitment, Job Insecurity / Loss, Medical Discrimination, Premium Payments, Prior Authorization, Social Security Disability, Suicide / Self-harm, Transparency in Health Care

My Story

Hi y'all! My name is Sarah and I'm a 24 year old disabled woman living in the southern United States. I am disabled by both mental and physical chronic illnesses.

I have experienced severe anxiety since preschool, which was never addressed until I began seeking treatment at nineteen years old. I have also been diagnosed with PTSD, panic disorder, and Bipolar disorder, all which impact my day to day functioning.

Following a battle with Pneumonia and an EBV infection in 2011, my physical health was never the same.

Though doctors told me I would recover and should've been recovering like other patients with these same illnesses and infections, I developed POTS symptoms and was not believed by my mother or doctors I visited to get to the bottom of what was happening to me (heck, I didn't even know that POTS existed!)

At 12 years old I was fainting, experiencing palpitations and tachycardia, breathlessness, chest pain, lightheadedness, blurry vision, brain fog, blood pulling, pain, nausea, fatigue, worsening vision, and more. These symptoms worsened over the years, and eventually became disabling when I moved away for college in 2018. I finally began researching what was happening with my body, and that's when I came across POTS.

When I was finally able to find a POTS specialists eight years later, I was immediately diagnosed following my tilt table test and other testing at a Dysautonomia center.

A couple years later I woke up with what I believed to be the worst "headache" of my life. This turned out to be a several day long migraine, and what began as episodic with about 10+ migraine days a month quickly turned chronic, leaving me with more than 15+ migraine days a month. I still battle migraine nearly daily despite preventatives and abortive medications.

Sadly, I began experiencing worsening neurological symptoms following my POTS diagnosis, including pins and needles, numbness, fatigue, muscle spasms and spasticity, worsening brain fog, dizziness, tremors, muscle weakness, and impaired balance, just to name a few. This was attributed to "fibromyalgia" by a dismissive doctor who didn't take my symptoms seriously, but I didn't give up my fight for the correct diagnosis. Years later, I found a neurologist who began multiple tests and MRI's following facial numbness spreading down the left side of my body. My several, separate MRI results showed multiple lesions, and a VEP test followed following vision problems in my right eye, in which I was diagnosed with a case of Optic Neuritis.

This is only part of my diagnostic story, as there are too many details to recall and share, but I hope these words give a glimpse of what disabled people go through pre diagnosis to receiving a diagnosis or diagnoses.

Thank you so much for taking the time to read this! 🙂

My Motivation and Inspiration

My inspiration to keep going is my Catholic faith and my hopeful nature for my future. Though my body at times feels and seems to be in ruins and my life isn't how I originally pictured it at 24 years old, I am hopeful for the future I can still build for myself. I may not be able to proceed with the original dreams and aspirations and plans I held, but I know I can aspire to accomplish and achieve even greater things through my disabilities, as I know the plans of God's purpose for my life will be greater, for His mountain highs are greater than the valley lows this life has brought my way.

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