"I'm Lisa – someone with a big heart and a curious mind. This is my story."

My path: from full of energy to completely depleted

The accident – In 2014, I was hit by a van while riding my moped. The driver was turning and didn’t see me. At first, it seemed like I got off lightly: some neck pain, some shock. But over time, more symptoms appeared: fatigue, neck pain and headaches, full-body aches, back problems, migraines, dizziness, sensory overload, and trouble concentrating. What started as “vague complaints” turned into a long process of losing more and more of myself.

Years of searching and trying – From specialist to specialist, from conventional rehab, physiotherapy, and occupational therapy to alternative treatments. But a clear cause was never found. Meanwhile, my world slowly shrank. Studying, working, horseback riding, a night out – things that once felt natural became too much and eventually impossible. Still, I kept trying. I kept searching.

The turning point of hope – In 2022, I visited Cognitive FX in Utah. On their brain scans, they saw what no one had acknowledged before: an unresolved concussion – the root of my symptoms. I was diagnosed with post-concussion syndrome (PCS), which in the Netherlands falls under acquired brain injury. The clinic explained that my nervous system was chronically dysregulated. I started their intensive rehabilitation program: ten days on-site, followed by continued recovery at home. It was tough, but something started to shift. Tiny steps forward gave me a glimmer of hope.

The setback – Just over a year ago, I got a virus – and shortly after, a rough airplane landing made things even worse. My neck took another blow. Things declined fast: severe migraines, extreme sensory overload, and a body that completely crashed. My nervous system went into total overdrive. I couldn’t tolerate light, sound, or movement. I spent weeks in pitch darkness and could only leave the room wearing sunglasses. Even sitting at the table to eat was no longer possible. My partner Jos brought me meals in bed. Going to the bathroom felt like a journey across the world. Everything I had worked so hard for slipped away again.

I tried everything once more: online sessions with CFX, visits to specialists, physiotherapy, osteopathy. But nothing helped. Instead, new diagnoses followed: ME/CFS and POTS. The dysregulation of my nervous system became more intense than ever. It felt like everything made it worse.

A tiny shift – Recently, a courageous doctor and I found one medication that gave some relief. Tiny, but real. I can take care of myself a little more: getting up is a bit easier, I can eat at the table, and take a seated shower. Tiny steps – but they feel like huge victories.
Still, I spend more than 20 hours a day in bed. Climbing stairs is a struggle, I wear sunglasses constantly, can’t tolerate sunlight, and remain severely overstimulated. I can’t leave the house, and everyday tasks like cooking or cleaning are still impossible.

It’s deeply confronting – now I truly understand what it means to be sick. After the accident, I thought things were rough. But I was never bedridden like I am now.

And yet, I’m more grateful than ever: for what I still do have. For Jos – my rock. For my cats, always by my side. For friends and family who support me in every way they can. Those are beams of light in an otherwise dark world.

I dream of a summer evening in the garden with Jos and a few friends. A cold drink, just being together... and laughing. That’s the vision I’m holding on to.