You know these moments when you genuinely feel that you’ve been struggling A LOT but then you get to see someone else’s struggle up close and personal and you realize that there really are degrees in hell? I had such a moment yesterday.

After browsing through Netflix to find something to look at, I stumbled upon a documentary film called Unrest. It is produced and directed by Jennifer Brea and shows, in a very intimate way, what her life is like. Jennifer lives with ME/CFS (chronic fatigue syndrome). After seeing her film, I realize that I was just dipping my toe a little bit into what Jennifer is experiencing every single day.

During many months of my Long Covid-journey, one of the symptoms I struggled with was extreme fatigue. Every day was about planning around my energy. Going to the toilet from my couch and back meant at least four hours of rest on that couch before I could maybe go to the dinner table and sit down for a short while before going back to the couch again. Mind you, I don’t live in a mansion: it’s roughly six steps from my couch to my toilet, and roughly four steps from my dinner table to my couch. I have cried so much during this time – I was so incredibly afraid that this had become my new normal, for the rest of my life.

So there I thought I had it bad. Well, most days of her life, Jennifer cannot even leave her bed. Her film shows her physically crawling up a flight of stairs, having to lie down mid-way. Other people are featured in her film as well: some of them need to wear headphones and sunglasses in their bed because even tiny sounds and light are too much for their bodies to handle. These are people in the prime of their life! And they are spending it lying down in a dark room. Not for months, but for years.

Medical science today cannot find the cause of ME/CFS and does not know how to cure it. Which means that there are a lot of people in this world who believe that this is “all in someone’s head”. I was told the same thing and it infuriated me. I cannot imagine how it feels for someone living with ME/CFS, to be told that you just have to “think right” and you will be able to leave your bed. To me it’s painfully obvious that there are areas within medical science that haven’t been explored enough yet. Fortunately there are scientists (even Nobel laureates, I learned) who are dedicating their careers to finding the cause of ME/CFS and hopefully a cure. However, as I’ve also understood, these are not nearly enough as there is little funding for ME/CFS research in many countries.

Today, literally millions of people around the globe are missing from their careers, schools, families and communities because of this disease. This is highlighted in Jennifer Brea’s film and the yearly #MillionsMissing campaign. My heart goes out to each and every one of them. I realize that I got the ‘light’ version of their experience and already that was such a challenge for me, not only physically but also mentally. I cannot imagine what it must be like to see the whole world constantly moving while you are bound to your bed; not for weeks or months, but for years, decades and perhaps the rest of your life.

I am in awe of Jennifer Brea who ends her film with words of positivity and gratitude about her life. She and millions of other people are living with extreme fatigue every day and I can only imagine the immense challenge it must be to keep coming back to a space of positivity and gratitude inside oneself, over and over again.

Watching Unrest was a humbling experience for me – if you have 1 hour and 38 minutes in your life and a Netflix account, I can highly recommend watching it!

You can find more information on #MillionsMissing here
and more information on Unrest here

Photo: Krista Mangulsone – unsplash.com