Over the past few years something has started to bother me more than I expected. Not even the illness itself, at some point you kinda learn to deal with what your body and brain allows and what it doesn’t anymore. What really gets to me is the way I hear people talk about long COVID. The jokes, the skepticism, the casual comments about it being stress, or mindset, or just being out of shape. People say it lightly, almost playfully, as if it’s harmless. But when you live with it, those words land very differently.
Every time I hear it, I catch myself thinking the same thing. What if we talked about cancer like that?
Imagine walking into a doctor’s office because something clearly isn’t right. You’re exhausted all the time, you’re losing weight, your body feels unfamiliar. And the doctor glances at a few tests and says, “You’re fine. Probably stress. Try relaxing more.” We would never accept that today. Cancer is serious and measurable.
But that certainty is actually very recent.
Cancer has been around for thousands of years. Ancient Egyptians described tumors. The Greeks wrote about them. Hippocrates even named the disease. People clearly saw that something was growing inside the body that shouldn’t be there. The suffering was obvious. What they didn’t have were the tools to explain it. No microscopes, no scans, no labs. Doctors were guessing most of the time. And when medicine guesses, doubt creeps in fast.
For centuries cancer wasn’t clearly understood. Patients were often sent home with vague explanations or simply told to accept it. Only when science learned how to look inside the body – when cells became visible and tumors showed up on images — did cancer become undeniable. The disease didn’t suddenly appear at that moment. We just finally had proof.
Once you see that pattern, you notice it everywhere. Burnout followed the same path. Twenty or twenty-five years ago burnout wasn’t even considered a real diagnosis. It wasn’t insured. If you were exhausted, you were told to toughen up. Now everyone accepts it. Companies have policies. Doctors treat it seriously. Nothing about humans suddenly changed. We simply started listening.
We always seem to follow the same route: first disbelief, then debate, then research, and eventually acceptance as if it had always been obvious.
Which brings me to long COVID.
After one global virus, millions of people ended up with the same cluster of long-term problems. Deep fatigue that sleep doesn’t fix. Brain fog that makes simple thinking hard. Heart issues. Nerve problems. Crashes after small efforts. Neurological pains. People who used to work full days now planning their energy hour by hour. Businesses stall. Careers fall apart. Families carry the load. Children are sick too. Parents and their kids are struggling at the same time and daily life turns into pure survival.
And still, because a standard test sometimes looks normal, people shrug.
Living with long COVID feels like slowly retreating from your own life. From the outside I probably look fine. I can talk, work a bit, show up. What people don’t see is the constant calculation behind everything. How much energy do I have today? What will this cost me tomorrow? What do I cancel so I don’t crash? Your world quietly becomes smaller while everyone else keeps moving at full speed.
What surprised me most is how lonely that can feel. Sitting with my doctor, an infectious disease specialist, at the hospital, finally talking to someone who truly understands what post-viral illness does, I sometimes get emotional out of nowhere. Simply because someone listens and believes me. It’s strange how powerful that is. Being taken seriously shouldn’t feel special, but after years of explaining yourself, it does.
Family and close friends try their best, and many of them know, after 5 years, that something is clearly wrong. But there’s also a lot of noise out there. Misinformation. People convinced it’s exaggerated or psychological. Or even conspiracy or a hoax. The nonsense that people come up with nowadays is mind blowing. And that attitude creates distance. It makes you feel invisible at the exact moment you’re already fighting just to keep going.
Through support groups I’ve met people whose lives have completely unraveled. Smart, capable people who used to run companies, raise kids, build things, now struggling to get through a normal day. Some talk openly about not wanting to continue. Some, I don’t know the numbers but I hear it too often, have already taken their lives. Others consider euthanasia because they simply can’t imagine a future like this, and I’d be lying if I said those thoughts never cross my own mind on the harder days, which shows how heavy this can really get. That’s what hurts the most, because this illness takes more than health. It takes hope.
History keeps teaching us the same lesson. Illness doesn’t wait for us to invent a test before it becomes real. It’s already real for the people living with it. Science just needs time to catch up.
Long COVID is part of that same story. And years from now, when everything is measurable and properly understood, we’ll probably look back and wonder why we ever doubted the people who were clearly struggling.
I’d rather we skip that phase and simply choose empathy a little earlier.
Check in with your loved ones, please ❤️
Cheers,
Arjan
arjan eikelenboom 