I was diagnosed with Hypermobile Ehlers-Danlos Syndrome, yet something inside me kept whispering that this wasn’t the full story. After years of fighting for answers, I still believed that one day a doctor would finally listen — really listen — to what I had been trying to say. I had no idea how fragmented healthcare could be. I truly thought doctors regularly consulted one another, especially across different specialties. My only reference for hospital life came from romanticised medical TV shows. How could I have known what the reality looked like?
In 2021, I gathered my courage and went to see an internist. Something was deeply wrong. Covid had just entered our lives, and if my body even sensed it, I got it. Each time, I hovered on the edge of consciousness — low blood pressure, a sluggish heart rate, and a brain that felt like it was shutting down. Prednisone pulled me through time and time again, but no one could explain why. I was told my lungs were fine, so the answers stopped there.
After my second vaccination, I collapsed. I only came back after being given Dexamethasone. A retired GP who had come in to help that day looked at me with concern and said, “This needs to be investigated.” That was the first time someone truly acknowledged that what I was experiencing was real.
I found myself sitting in the waiting room for the internist, hopeful and scared. A trainee called me in. She asked questions, examined me, and sent me back out while she “discussed things.” When I was called back, the internist smiled — as if he had good news. He said he was happy because he had a diagnosis and there was treatment for it. And then he said the words that burned themselves into my memory:
“I have 100 women like you in my waiting room, and all of you just need a psychiatrist.”
I sat there in disbelief. Not only dismissed — but erased. My suffering, my symptoms, my truth… swept aside with one sentence.
By the end of 2022, I was scheduled for abdominal surgery. I didn’t know then that life would never return to what it had been. After surgery, I became sicker than ever. Prednisone was the only thing keeping me conscious. Each time the surgeon tried to taper it, I would black out — though to me, it simply felt like falling asleep.
Eventually, I returned to a pain clinic farther from home. As soon as they connected me to the monitor, they noticed my heart rhythm was off — something I already knew and normally treatment helped with. It usually felt as if the treatment “reset” my immune system. But this time, everything collapsed. My heart rate and blood pressure crashed like a house of cards. The doctor there knew me well — my symptoms, my history — and he acted immediately, pushing Dexamethasone through the IV. Slowly, I came back.
Later, he sat by my bedside and asked gently, “Have they ever tested your adrenal function?”
Of course they hadn’t.
He promised to send a letter to my GP.
For a moment, we believed this would change everything — that we were finally on the right path. But that hope faded quickly. I was getting worse, and doors kept closing. So we made a decision no one should ever be forced to make:
We went abroad to find medical care.
There, I finally received a diagnosis: Addison’s Disease. My Prednisone was replaced with Hydrocortisone — something that should have felt like the turning point in my story.
But coming home to the Netherlands didn’t make anything easier. The fight continued. The system resisted. And yet, after a long detour — and a longer emotional journey — we eventually found a doctor willing to take responsibility for my cortisol treatment.
Because of my hEDS, I also have gastroparesis, which makes absorbing Hydrocortisone incredibly difficult. And that reality remains life-threatening, because without cortisol… you cannot live. It’s a daily battle — one most people never see.
But here is the part I hold onto with both hands:
I no longer fight this alone.
I now have a brilliant gastroenterologist and a compassionate internist — and with my condition, that is something rare, precious, and far from guaranteed.
And while the journey has been long, painful, and often lonely, I share my story not for pity — but for awareness, change, and strength. No one should have to walk this path the way I did. No one should have to convince doctors to believe their pain.
I share it because if even one person feels less alone, or one doctor chooses to listen more deeply — then the fight for my own voice has already created something powerful.
