Each year on August 8, Severe ME/CFS Day, we pause to recognize the immense challenges faced by those living with the most debilitating form of ME/CFS. It’s a day to acknowledge the suffering, honor resilience, and remember the lives that have been lost.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, disabling disease with a wide spectrum of severity. While some people live with mild or moderate symptoms, approximately 25% of patients are severely affected—confined to their homes or beds, reliant on caregivers for daily needs like eating and personal care. Sensitivity to light, sound, and movement worsens their symptoms, and many require round-the-clock care.
This year, we raise awareness through the lens of Bente, a person with very severe ME/CFS from the Netherlands. Bente shares her experiences with raw honesty, offering a window into life with severe ME/CFS.
R.I.P. to my twenties. Gone, but never forgotten…
by Bente Kubin
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. One third of my life gone. Almost 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 lost. In my mind, I’m not a day older than the day my life stopped.
𝙏𝙞𝙢𝙚 𝙞𝙨 𝙖𝙣 𝙞𝙡𝙡𝙪𝙨𝙞𝙤𝙣
Time feels weird when your life stands still. When you can hardly create new memories. You’re in some kind of strange time capsule, trapped and hidden away under unbearable 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’d get lost in places I once visited daily. People have changed. “Friends” are suddenly ten years older, while inside I still feel like I only spoke to them recently. They’ve lived a whole life in the past years. To most of them, I’m probably nothing more than a distant memory, while to me they are my last and most vivid memory of life. In my mind, we’ve only just shared the happiest moments together, while they may already have forgotten them long ago.
Ten years of silence. I must rely on memories from before and stories shared by those closest to me. The contrast couldn’t be greater between how I’d wish to live and how I’m forced to live to survive.
𝙎𝙝𝙞𝙛𝙩𝙞𝙣𝙜 𝙡𝙞𝙢𝙞𝙩𝙨
At twenty, I told my parents that I was giving myself and the medical world five years to get better. When I turned twenty-five, I pushed that deadline to my 30th birthday. There was no other option. Now I’m thirty. Yet sicker than ever. For so long, I believed my body was slowly healing. It just had to. 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 every cell and every organ is beginning to fail under the weight of that strain.
The limit is constantly shifting. In time, in suffering. Where is the line? I know that mentally, at least, I haven’t reached mine yet. Physically, I’ve already surpassed it countless times.
𝙀𝙣𝙙𝙡𝙚𝙨𝙨 𝙜𝙧𝙞𝙚𝙛
Being so seriously ill for so long is grieving without end. Living loss. Every day I have to say goodbye to dreams, to goals, to parts of myself. They shift and fade until barely anything is left to hold on to.
Even my deepest wish -to become a mother- stands teetering on the brink of impossibility. It feels like heartbreak that knows no end. My heart is shattering over and over again for everything I so desperately want, yet remains out of reach.
I can’t put into words how deeply it affects me when I think about how things could have been. That I wouldn’t have had to lose so much. If the disease hadn’t been so fundamentally stigmatized and systemically ignored. If the world hadn’t deliberately looked the other way. So many lives have been unnecessarily destroyed because of this. That is intolerable.
𝙆𝙚𝙚𝙥 𝙗𝙧𝙚𝙖𝙩𝙝𝙞𝙣𝙜
My thirtieth birthday should have been full of joy, milestones reached, plans fulfilled. Streamers, cake, balloons, dancing. Music, delicious food, and heartfelt hugs from the people who make me smile. That’s where I find my happiness. Being together. Celebrating life. Because there is so much to celebrate. If only illness didn’t get in the way…
Instead, there’s silence. Darkness. I face each day fighting for my life. The bar is lower than ever. I’m grateful if I just make it through the day. There’s no room for anything other than survival.I wish I could wake up relieved, realizing it was all just one long, surreal nightmare. But sadly, it isn’t. I’ve promised myself that as long as I can, I will keep breathing, because every breath is one closer to healing. Every single day is one closer to relief.
I still have a whole life to live before I die. I have countless things to do, people to see, memories to make!!
And strangely enough, I still believe that’s what’s meant for me. Because after this all-consuming shitshow, surely something truly magical must be waiting for me? Although even a fraction of that would make me extraordinarily happy…
ME/CFS is not rare. Millions worldwide live with this disease—yet those most in need often remain unseen. To everyone living with severe ME/CFS: We recognize the courage it takes to face each day when the world feels distant and access to care is limited. For those supporting loved ones, your compassion makes an enormous difference.
Together, we must raise awareness and drive the urgent research that can change lives. Every voice and every action counts in bringing the attention and resources needed to improve care and find effective treatments.
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