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When the whole world stands still

Updated: Jan 9, 2021

Sometimes in life the most unexpected things happen. Things you couldn't even dream of.

Sometimes in life you're forced to go on a break. To wait, until everything is back to normal.

This is what it's like to be diagnosed with chronic illness. The thing is- you never know, when- or if- your life can ever go back to normal.

We were all forced to go on a break this year. Due to a global pandemic, we were all put in a situation we had no control over. Some of us couldn't go to work anymore. Some of us were suddenly completely alone and isolated. We are suddenly worried about our health, and the health of our loved ones. Things we might never have thought about before are now a real threat.

To this day, we are not completely sure, how everything can go on and when things can go back to normal. We're in a situation of complete uncertainty.

To me, and millions of other people around the world, who suffer from Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, these feelings are not new.

When I got very ill in 2018 I was forced to leave work. I had no choice about it, because my body didn't give me a choice. I didn't know if I could go back after a week, a month, a year, or never again.

I was suddenly facing severe existential fears. What am I going to do, if I can't work anymore? How can I afford my life? A roof over my head? A full fridge? Everything I have worked for and built over the last years- suddenly taken away by a horrible illness that isn't even taken seriously in my country.

A lot of my freedom was taken away from me. I couldn't choose anymore to go out whenever i want, because my body often doesn't give me that choice. Sometimes I have to stay inside for days, because there is no energy and all I can do, is rest.

Hanging out with friends? Going to clubs? Birthday parties? Concerts? All these things that are just pure fun for most people, to me they come with severe exhaustion, malaise and pain for days after. For every bit of fun, I pay a high price. That's why these things became very rare for me. Clubbing, dancing and partying is something that's pretty much out of reach for me. Not because I don't want to! But most of the time the price is just way too high for me to pay. I cannot spend energy that I don't have, for something that is not necessary.

On many days, where my energy is already low, i simply do not have a choice. So many times I had to cancel plans because my body didn't give me another choice. No matter how much i was looking forward to whatever that thing was. I just had to say no and accept the limits of my own body.

Since years I'm hoping for a cure. For more research. That this illness is finally taken more seriously. That people understand the need for a better treatment of this illness.

Of course, there are small things I can do to contribute to my health. I have tried countless things that could improve my situation at least a little bit. But that doesn't change the fact, that I have to live with an illness, that is chronic, with no known cure. Where the chance of recovery is extremely small.

I had to accept the fact, that in my situation, the most important thing is hope.

That i will not give up hoping for better days will come. And while I wait for better days to come, I can try to make the best out of my situation, and not let fear take over.

The battle against fear and depression, for me and for millions of other people with chronic illness, is a daily struggle.

The fight against existential fears. The fight against feelings of worthlessness. The struggle with living in a society that values productivity, while not being able to be productive.

Feelings of loneliness. The fear of missing out. The feeling of being misunderstood.

We are currently experiencing times, where everybody is facing a similar situation. Because we need to protect our health, we need to stay inside. Put our lives on pause.

Millions of people around the world are now facing existential fears, loneliness, depression and anxiety. It is a completely scary situation and I understand everyone in this world who struggles right now.

I know from my own life experience, how hard it can be to be forced to stay at home. To put your career on hold. Not knowing, how to pay the bills. I know, how tough it can be, to be lonely.

All I can tell you, is to hang in there. Don't give up hope. Because better days are coming. And you are not alone.

I hope, that this pandemic is a chance for us to see, that there is nothing more important to us, than our health.

That we finally understand, that proper healthcare is a basic human right.

That some things in this world will need to change. That we cant't just continue like this.

I have hope, that COVID-19 will end. Researchers around the world are joining forces to work on a cure. Millions of dollars are put into research.

I hope, that ME/CFS will have an end too.

That there will be more research done for treatments, that will drastically improve the lives of millions of people around the world. That all of those people, who had to put their lives on hold, can someday pursue their dreams again.

May is ME/CFS awareness month. Were you aware of ME/CFS?

Donate here, to support research for ME/CFS:

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