🧖‍♀️ A seat, please: Living with Long Covid in a world that doesn’t see

I’m often told I don’t look sick — usually by people who don’t know me at all.

For those unfamiliar with my story: I developed Long Covid after my first infection in 2020. I’ll spare you the full list of thirty-something symptoms, but let’s just say life, as I knew it, slowly disappeared.

At first, rehabilitation seemed to help. I thought I was on the road to recovery — until a second infection at the end of that same year knocked the ground from under me again. My mental state declined, and the body I had worked so hard to rebuild began to collapse again.

The simplest things became impossible.
A walk on the beach? I collapsed after 100 meters.
Holding a conversation? I couldn’t find the words or remember what the other person had said.
Reading? The words just wouldn’t stick.
Driving? I ended up on the wrong side of the road and was hit with a pounding headache after just ten minutes.

Just to name a few.

My life — and my daughter’s life — turned upside down. There were moments I genuinely wondered whether I could go on living like this. I felt devastated.

Being chronically ill without a clear prognosis is the loneliest battle I’ve ever fought.
And still, despite the darkness, I kept trying.
I kept searching — even with the little energy I had.

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🔥 The sauna and the science of recovery

One doctor — amazed by all the things I had already tried on my own — suggested sauna therapy. He explained how heat activates processes that help repair and regenerate mitochondria, the energy factories inside our cells.

It took a long time before I could manage even one visit a week. The combination of heat, travel, and walking meant I usually needed about three days to recover afterward.

But I go. I go because it’s something I can do. And because I go on the same day every week, I’ve slowly built connections — people who recognize me, offer a smile, a kind word. Today, that mattered.

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🚫 When inclusion fails

Because of my limitations — like PEM (post-exertional malaise) and POTS (which causes dizziness and nausea when I stand too long) — I need to sit.

That’s all. I don’t ask for much. Just a seat.

But even that often becomes a battle.

To join a sauna infusion, I have to arrive 30 minutes early. Especially because I need to sit while waiting in line, and I need a spot inside where I can stretch my leg. Due to post-thrombotic syndrome in one leg, I can’t sit with my knee bent for too long — I lose sensation in my foot. I need to sit differently, or I’ll pay the price for days.

Today, all seats were taken before the first infusion. When I kindly asked the people sitting if I could take a seat, I got the reply:
“Then you should’ve arrived earlier.”

So I sat on the floor — again — and the people I had just spoken to started laughing and mocking Long Covid.

Another guest kindly brought me a chair from the restaurant. But the mocking continued after the first infusion. One woman kept making snide remarks about Long Covid. Eventually, she got distracted by the fact that I had dropped some orange seeds on the floor. That, at least, was easier for me to cope with than her sarcasm about my illness.

It only stopped when I asked, “Would you say this to someone with cancer?”
She snapped back, “You can’t compare those two diseases.”

That’s when I turned my back and let the tears come.

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💔 Kindness still lives

Some people — friends and strangers — came over and offered me warmth.
I couldn’t even tell them the full story.
The words wouldn’t come.
That, too, is part of the damage Long Covid has done.

I’ve been misunderstood and discriminated against more times than I can count, and it has left a mark on my soul.

During the break, I retreated. I found my breath again. I prayed and asked what God was trying to teach and tell me. Somehow, I gathered enough strength to attend the next infusion.
After the fourth infusion, I was fell asleep — my body completely spent.

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💡 Something subtle had shifted

On the way home, I noticed something had changed.

Where I used to long for people to understand me, today I felt no urge to explain.
Where I once wasted energy defending myself, I now stayed silent — because I saw no point.
Where I would’ve skipped the next infusion out of shame or anger, I stayed.

You can’t see my illness from the outside.
Maybe I just look pale — from pain or fatigue.

But I carry this reality every single day.

And all I asked for… was a chair.

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💬 To everyone living with an invisible illness: I see you. I’m with you.
🪑 And to every place that still forgets to provide a seat — please, do better.