Sanne van Diemen

You couldn't tell by looking at me. I finished my studies, I have a great job, and I'm just living a normal life. But underneath that “normal” life, I'm carrying a history that has shaped me to who I am now.

February 1, 2012
I was 14. I had just been diagnosed with MCTD—an autoimmune disease—when my body decided to go one step further.

That day, I was unusually cold. I had trouble walking, and my hands were shaking. When we got home from a birthday party, I walked straight upstairs without saying a word—something I normally never did. My mom was suspicious. And thankfully so. When my dad called me down for dinner a little later, I didn’t respond. He found me on the floor, having a seizure.

The ambulance took me to the AMC. I spent five days in the paediatric ICU, in a coma. After extensive testing, the doctors diagnosed me with brain inflammation—encephalitis. The exact cause remained unclear, but because of my recent autoimmune diagnosis, they opted for a high dose of prednisone. It worked. Slowly, I woke up.

It took me a very long time to realize what had happened to me. From one moment to the next, my body had shut me down. That feeling—of losing total control over yourself—has never completely left me.

My first steps out of bed felt like my legs were made of spaghetti. And even so, ten days after I woke up, I celebrated my birthday at home. No one had expected that.

The Road Back
At home, I recovered slowly. Fewer classes at school, but I was determined to finish that school year. That sense of control was so important. I wanted so badly to be normal.

The recovery was tough. The prednisone made me gain weight, and my energy levels dropped. But I kept going. Until March 7, 2013. Another seizure. Back to the paediatric ICU.
This time, the doctors knew immediately what to do. After two days, I woke up—clearer than the first time, but I also knew what to expect. Prednisone again. That long road back again. I gained twenty kilos, and that was hard—not because of how I looked, but because it made it obvious that something was wrong. And I wanted so badly everything to be normal.

Still, what stands out most from that period is the sense of warmth. The kind nurses, the visitors, and my father who stayed overnight at the hospital. My parents and little sister sometimes had a harder time than I did during that period—they thought I might not survive. While I had only one thing on my mind: moving forward.

Moving Forward
After the second brain infection, I went back to school. I split my senior year of high school over two years, studied at Eindhoven University of Technology, and completed my Master’s degree in 2023. That felt fantastic - proof that I could do it, although it took blood, sweat, and tears.

My parents often said that it was okay to take a step back. But taking a step back felt like losing control—and control was exactly what I needed.

Now
I’m 29. It’s been fourteen years. The time before and after are almost equal in length.
I live a life I’m proud of. I have a job as a construction consultant, where I finally don’t have to walk on eggshells anymore. Where I perform well without it taking everything out of me.

But I still feel the consequences. My energy levels are consistently lower than they were before that first day of February in 2012. And lately, even lower than in the years before that. I’m hyper-alert to what my body is telling me—that will probably always be the case.

For years, I refused to dwell on what really happened. Through the ItsME Foundation, I found a place where I was allowed to do just that. At the dinner at the Pillows Hotel in 2025, it felt as if a floodgate had opened. And as a coach at the Bondgenotendag 2026, I was able to give something back—to others walking the same path.

Encephalitis has broken me and built me up at the same time. It has given me a close bond with my family, great determination and the knowledge that I can handle difficult things.

It has made me into who I am today.