Lorraine’s Story | FND Awareness Day UK 2026

March 25, 2026

A personal story of living with Functional Neurological Disorder (FND).
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My FND Story: The “Locked-In” Reality

My journey with Functional Neurological Disorder (FND) began in 2020. It started with fainting and excruciating pain that amped up my Fibromyalgia, always hitting hardest during my menstrual cycle.

For years, I lived in fear of my body “shutting down”. I experience terrifying episodes where my limbs go rigid, my mouth clamps shut, and my eyes flicker or close. I am “locked in” – unable to move or speak, breathing only through my nose, yet fully aware of every muffled sound and conversation around me.

Because I remain conscious during these “glitches”, I have been met with a lack of understanding. There were times when ambulances were called, but because I was aware, I was refused hospital admission. Being trapped inside a body that won’t respond while professionals assume you are “fine” is a unique kind of trauma.

The turning point came in November 2024 after a stroke-like episode. I was convinced it was a stroke, but a hospital specialist suspected FND. Following neurological testing, the diagnosis was finally confirmed.

FND is a complex “software” issue in the brain’s signaling. I share my story for FND Awareness Day to demand better education for emergency services and to support those fighting to be heard through the tremors, the stiffness, and the silence. We are still in here.

#FNDAwarenessDay #FNDWarrior #FunctionalNeurologicalDisorder

~ By Lorraine, Age 42

5a New Road Avenue
Chatham, Kent
ME4 6BB
Email: contact@fndaction.org.uk