The Beginning of My Story

When starting this blog, there is one story I must share first — the story that shaped my voice, my mission, and my determination to advocate for others living with Ehlers-Danlos Syndrome. It begins with my long journey to a diagnosis.

The path to a diagnosis is not equal for everyone. Too often, it depends on where you live, the doctors you meet, and the privilege of access to healthcare. I was born in the Netherlands in 1985, in a small village below sea level — a place with very limited resources surrounding it. When I was 15, my parents, my younger sister, and I moved to a larger city in the south of the country. I still live here today with my husband and our two children.

The first time my mother took me to a pediatrician, I was seven years old. That moment marks the start of my diagnostic journey. It would take 22 more years before anyone listened, believed me, or put a name to what my body had been trying to tell us all along.

For 22 years, I was dismissed, misdiagnosed, and blamed for my own suffering. I was told I was too sensitive, that I had psychological problems, or that I had anorexia. These assumptions caused harm — emotional, physical, and medical. They stripped me of trust in my body and in the healthcare system that was supposed to protect me.

Every time a doctor called me lazy or dramatic, I pushed myself harder. I forced my body beyond its limits in the constant battle to prove I was not what they claimed.
This is the reality for countless people with EDS. We are not “too sensitive.” We are not “imagining it.” We are not “difficult patients.” We are unheard and underserved.

My pregnancies were incredibly tough. I received poor care, and because of that, I carry trauma from that period. But even then — I survived it. And today, I speak up about it, because silence only protects the system, not the patients.

When my youngest child was 1.5 years old, I had several dance performances scheduled. After another dancer passed away, I was asked to step in for her as well. I pushed through overwhelming fatigue and pain — until one night, my body could no longer continue. I woke up unable to move, the pain unbearable. My husband carried me to the bathroom because I was too ashamed to lose control of my body. I screamed the entire way there and back.

That moment changed everything. My husband looked at me and said, “This can’t be in your head anymore.”

The next day, we went to our GP. He offered one final attempt: a neurologist or a rheumatologist — and if nothing came from it, he was “done.”

This is what people with EDS face: disbelief, exhaustion, and a healthcare system that gives up on us.

My sister had seen an excellent rheumatologist a week earlier, so I asked for a referral. And for once, luck was on my side — I got an appointment quickly. That day, I finally heard the words that changed everything:

Hypermobile Ehlers-Danlos Syndrome.

A name. A diagnosis. Validation.
But also the beginning of a mission.

I was referred to a rehabilitation doctor who continued my care. This doctor also helped uncover the medical issues affecting my children — but that story is for another time.