'From the Other Side of Care: What Living with FND Taught Me About Disability' by Lewis Robinson

When you spend years working on the care side of healthcare, you think you have a solid grasp on what disability looks like. You understand support needs, you see the systemic gaps, and you do everything you can to bridge them.

Then, almost overnight, your own nervous system decides to blow a fuse—and you find yourself sitting on the

other side of the desk.

Living with Functional Neurological Disorder (FND) is a sudden, terrifying shift. One day your body functions normally, and the next, the wiring between your brain and your physical body stops communicating. For me, that meant facing sudden paralysis and severe functional seizures that completely stripped away my independence.

10 Weeks in Hospital & Fighting the System

The physical symptoms of FND are heavy enough, but the complete lack of medical awareness makes the struggle exponentially worse.

Because FND is a problem with the brain’s "software" rather than its physical "hardware," traditional MRI and CT scans come back clear. In a medical world obsessed with neat diagnostic boxes, a clear scan often leads to total dismissal.

During a 10-week hospital stay, I found myself having to fight and self advocate for every single piece of care I received. I was constantly battling between matrons, consultants, and surgeons who simply didn't understand the condition—treating severe physical collapse and neurological distress as something to be brushed aside.

Things escalated to the point where my local MP had to threaten to step in just to force the hospital to take my condition seriously and provide proper medical oversight. That systemic ignorance isn't just exhausting—it’s dangerous. Gaps in care and a complete lack of FND training nearly cost me my life on that ward.

In the months after I was discharged, I couldn't go back to care work the same way—not after seeing the system fail someone from the inside. That experience became the turning point.

Turning Trauma into Purpose: Pushing for Real Education

There is immense hidden grief in acquiring a disability. Nobody prepares you for the weight of mourning the physical independence you lost, the career you knew, or the version of yourself you had to leave behind.

But surviving a system that failed me forced a new kind of purpose. It pushed me out of direct care work and into health navigation and advocacy.

My goal now is to bridge this huge knowledge gap by building dedicated functional seizure education for clinicians, nurses, and carers alike. No patient should ever have to spend a 10-week admission fighting to prove their symptoms are real to the very people assigned to care for them.

Why Real Awareness Matters

Disability doesn't always fit into a neat clinical textbook, and it certainly shouldn't be glossed over to keep people comfortable.

Spaces like Debunking Disability matter because we need to talk openly about the systemic failures, the medical dismissals, and the harsh realities of invisible conditions. Our stories aren't just personal logs—they are proof that the system desperately needs to change, and that proper clinical education can quite literally save lives.

By Lewis Robinson (@themedicalblindspot)