Bente (30) lost ten years of her life due to ME: 'RIP to my twenties'

"I want to live, not just exist." With these words about the multisystem disease ME, Bente from North Holland made a splash nine years ago with a readers' column in the then-paper edition of Metro . 2016 became 2025, and Bente recently turned 30. This often optimistic woman is still alive, despite some particularly difficult years. But we should really still call it "existence," not living.

That's why today, as the world commemorates the most serious form of ME, we're writing another column by Bente. Again: it's been nine years since that first one . According to the ME/CFS Association, ME is a serious, chronic, multisystem disease. The abbreviation stands for Myalgic Encephalomyelitis. For Bente, this means fighting through the days and nights for years. She can barely tolerate light, sound, smells, or food. She's too ill to entertain friends or family, have conversations, and often even to quickly check her phone.

ME has various degrees of severity, from mild to very severe. Today, on Severe ME Day, the world is remembering those most severely affected. A category Bente has been in for ten years now. Patients with very severe ME often disappear completely from society, from life. They are bedridden and forced to spend their days in completely darkened and silent rooms. Bente is barely able to make any kind of contact most of the time. "That's precisely why it's so important that their reality becomes visible," she writes, with or without the help of her mother. "For recognition and awareness. And ultimately – hopefully – better care and future prospects."

Last month, Bente turned 30. In the reader's column below, she shares what it's like to lose your entire twenties to this all-defining disease.

On July 12th, I turned 30, according to the calendar. That means ten years ago I became seriously ill and disappeared from the outside world. A third of my life gone. Nearly 4,000 days separated from just about everything I love so much. Over 87,000 hours of survival and wasted, precious time. My entire twenties gone. In my mind, I'm not a day older than the day my life stopped.

Time is a strange thing when your life stands still because of ME. When you barely make any new memories. You're in some kind of strange time capsule, locked away and hidden away in the most miserable conditions, while the world outside carries on as usual. A world that has changed in the meantime. I wouldn't recognize my own city anymore. I would get lost in the places I used to go to every day. People have changed. "Friends" are suddenly ten years older, even though I feel like I've only just seen them. They've lived a whole life in the past few years. To most of them, I'm probably nothing more than a distant memory, while for me, they are my last and freshest memory of life. In my mind, we've only just shared the happiest moments together. While they might have long forgotten them.

Ten years of quiet time. I have to make do with memories from before and stories about the experiences of the people closest to me. The contrast couldn't be greater between how I'd like to live and how I'm forced to live to survive.

People often say hopefully, "In ten years, the medical world will be so much further along." That should indeed be true, but I can tell you one thing: shamefully little has changed for ME in ten years. Not in treatment options, not in recognition, not in treatment. My greatest medical traumas occurred in the past two years.

Only recently does it seem like there's been some movement. Finally, serious scientific and clinical studies are being conducted worldwide. They're discovering that things are actually much more serious (an understatement) than they initially thought. There seems to be a shift in how people view PAIZ (Post-Acute Infectious Diseases) and how we've been mistreated for decades. And sadly, that's purely due to the explosion of Long COVID —and thus ME patients. But before we truly reap the benefits, it's probably at least another ten years (although I fervently hope that in the meantime, options will emerge to make it a lot more bearable). For many, it will already be too late.

At 20, I told my parents I was giving myself and the medical world five years to live again. When I turned 25, I pushed that limit back to my 30th birthday. There was no other option. And now I'm 30. Sicker than ever. For a long time, I believed my body was slowly recovering from ME. It had to be. Step by step, towards recovery.

But in recent years, it feels like I'm actually starting to pay the price of all those years of relentless struggle. As if my body, every cell and every organ, seems to be buckling under the onslaught. The limit is constantly being pushed back. In time, in suffering. Where will it lie? I know that mentally, at least, I'm nowhere near it. Physically, I've already crossed it countless times.

Being so seriously ill for so long is grieving without end. Living loss. Every day I have to say goodbye to dreams, goals, parts of myself. They constantly shift, until there's little left to hold on to. Even my deepest wish—to become a mother—teeters on the edge of impossibility because of ME. It feels like heartbreak that knows no end. A heart that breaks again and again for everything I so desperately want, but is simply unattainable.

I can't express in words how much it hurts me to think that things could have been so different. That I wouldn't have had to lose so much. If the disease hadn't been so fundamentally stigmatized and systematically denied, if the world hadn't looked the other way. So many lives needlessly destroyed because of this. That's incomprehensible.

My 30th birthday should have been all about celebration, milestones achieved, plans realized. Streamers, cake, balloons, dancing. Music, delicious food, and exuberant hugs from the people who put a smile on my face. That's what makes me so happy. Being together. Celebrating life. Because there's so much to celebrate. When that's possible...

Instead, it's quiet. Dark. I'm fighting for my life. The bar is lower than ever. I'm happy if I make it through the day. There's no room for anything other than survival. I wish I could wake up and realize with relief that it was all just one big, far-too-long nightmare. But alas, that's not the case. I've made a pact with myself to keep breathing as long as I can. Because every breath is one closer to healing. Every day, one closer to enlightenment. I have a whole life left before I die. I have countless things to do, people to see, memories to make!

And strangely enough, I still believe it's meant for me. Because after this all-consuming shitshow, surely something truly magical must be waiting for me? Although I'd be incredibly happy with even a fraction of that…

You can read more of Bente's columns on her Instagram @bentealinda or her Facebook page www.facebook.com/MagicEveryday .

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