The Lack of Knowledge in Dutch Healthcare – My Story of a Virus on the Balance organ, Sudden Deafness and Tinnitus

As I mentioned in my previous blog, if doctors had told me what I had to figure out on my own, I probably would have made very different choices. Before I share more positive updates about my journey, I need to get some more things off my chest—things that has been gnawing at me for years.

A few years ago, I contracted a virus that attacked my vestibular system (balance organ). I was bedridden for over a month—unable to move, shower, or even make it to the bathroom. Walking was impossible, and recovery took months. But that wasn’t the worst part.

The day the virus hit was also the day I lost my hearing completely in my right ear. Instead of silence, I was left with an unbearable noise—relentless, inescapable. Every night, I cried myself to sleep, only to wake up to the same deafening sound. It was torture. I couldn’t think, function, or even form a sentence. I was drowning in it.

When the emergency doctor came to diagnose me, I told her I couldn’t hear anything in my right ear. Her response? “Oh, that’ll come back, just give it some time.” And like any normal, trusting patient, I believed her.

Then the real nightmare began.

When the noise started, I called the doctor in desperation. I was referred to a hospital where they confirmed the virus had damaged my vestibular system and that I had sudden deafness. But when I finally sat down with the specialist—the one who was supposed to answer my questions and guide me through this diagnosis—I was met with complete indifference. I remember his exact words: “Yes, you’ve lost your hearing. And the noise? Well, you’ll just have to accept it.”

That was it. No treatment, no guidance, no empathy. Just “accept it.”

Try to imagine this: You’re still recovering, struggling to walk, adjusting to sudden deafness, and now you’re told that this horrific noise in your head is just something you have to live with. Because, hey, it’s not something that will kill you, right?

The appointment lasted less than two minutes before I stormed out, overwhelmed with rage, disappointment, and heartbreak. I wasn’t just angry at the doctor’s dismissive attitude—I was devastated that this was my new reality.

But I didn’t accept it.

I sought a second opinion, which led me to a hospital specializing in tinnitus therapy. But the group therapy only made me feel worse—none of the other patients had tinnitus in a deaf ear. They still had options, like masking devices, which wouldn’t work for me. I left feeling more hopeless than ever. Still, I kept searching. That’s when I found a clinic in Germany offering infusion therapy with prednisone, which was said to help severe tinnitus cases. Desperate, I went.

And wow, the difference in care was night and day.

The clinic was part of a hospital, meaning all specialists were under one roof. The doctors were kind, thorough, and actually listened. All the tests I had waited months for in the Netherlands? Done in one day.

Then, one of the doctors sat me down, and what he said shocked me to my core. Had I been in Germany and immediately reported hearing loss, I would have been given a prednisone treatment right away—because studies show it gives a 50/50 chance of restoring hearing. Of course, there’s no guarantee, but 50% is a hell of a lot better than 0%.

I was furious. How could Dutch doctors not know this? How could they not have tried?

In the end, the infusion therapy didn’t work, and I was back to square one. Accepting it felt impossible. The noise was unbearable. It pushed me to my first real breaking point.

I no longer wanted to live.

My panic attacks were numbed by medication at the time, so I could "handle" that. My balance slowly improved. But the noise? That was enough to send me into darkness. The only thing that kept me going was my then-partner, who convinced me that there were still beautiful things to live for—like having a child. And though it may sound illogical to some, that thought kept me afloat. I fought through it. I became a mother. (How? That’s a story for another day.)

Through sheer willpower, I learned to live with it. There are still days when it’s overwhelming, but I now understand what triggers it and how to calm it down. True silence will never exist for me again—and that still gives me setbacks—but I’ve found acceptance.

The rage, however? That has never faded.