We people with ME

Last week was not about Donald Trump, of course not! It was all about Jen Brea, a fellow ME-sufferer. And it was rather a good week for the ME community, all in all.

On the day of the inauguration of the new president of the United States of America, the documentary Unrest was premiering at the Sundance Film Festival. Unrest tells the story of Jen and Omar, newlyweds facing the unexpected, and the four extraordinary ME patients that Jen meets throughout her journey, in the United States, UK and Denmark. 
And only days before the premiere, Tuesday January 17, Jen Brea’s TED Talk What Happens When You Have a Disease Doctors Can’t Diagnose was broadcasted. She explains how she got ill with an unknown viral infection and never recovered. The next thing that happened was that there was no acknowledgement for her bodily dysfunction from health care practitioners: ‘I thought I had a rare disease, something doctors had never seen. And then I went online and found thousands of people all over the world living with the same symptoms, similarly isolated, similarly disbelieved.’
When she spoke about hope I started crying and kept on crying. I cried long after her speech had ended. Somewhere in between sobs I heard the mail being delivered. After knitting two pussyhats, I had sent one to a friend with ME. Decades ago, this lady used to be active in the feminist movement but now she is so ill, she cannot even crochet a little bit. I was hoping it would brighten her day. Apparently it did, because it was her postcard arriving, telling me she was happy with her hat and going to wear it on January 21.
Last Saturday, I put on my own pussyhat right before I started my breakfast. Around noon the first photos of the Women’s March in Amsterdam could be found online. And yes, I started crying again, wishing I could have been there. And yes, again the mail arrived at that exact moment. A dear friend, with whom I agreed to be adopted sisters and who is also affected by ME, sent me a small gift for no reason but to make my day. And she did. Miracles, right?
Jen Brea calls herself one of the ‘lucky ones’. She doesn’t know what would have happened if she had gotten sick before the internet, and had not found the ME community. And she is right. We, people with ME, we meet online and stick together in solidarity. We may not always agree, but we understand what it feels like to fall through the cracks of the health care system and not to be heard by politicians. We turn to each other for information, reassurance or a kind word. Without that we would simply be lost.

Jen Brea ended her TED Talk stating that ‘we need to be willing to say, “I don’t know.” “I don’t know” is a beautiful thing. “I don’t know” is where discovery starts..’ Nope, no spoiler alert: this talk is about much more than I mention in this article, it is still worth watching. Please, do so.
Now, if only… if only more doctors (some already do) would admit that they don’t know. That we have a disease they yet can not diagnose, and declare to politicians that funding is needed… Now that would be a miracle indeed.
So let me send a big, virtual hug to Jen for speaking up. And a lovingly pat on the back for all of you out there (ME-sufferers, advocates, friends) for sharing the same message: we need answers, we need miracles…

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And you can find me on Twitter: @Fleurtje_Eliza.

This post is also available in: Dutch

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3 Responses to We people with ME

  1. Pattie says:

    You made me cry. Jen made me cry. I pretend in my mind that I’m normal. I pretend to my family that it is no big deal. And i know that I’ve gotten off pretty easy with this disease. If I rest enough, I can get out of the house and do something. Not as much as a normal person, but I’m grateful for every little thing I can do. I’m not in a wheelchair, but spend most days on the sofa, day after day. They tell me it will kill me if I don’t get out and exercise and keep moving. I wish those doctors could be inside this body and experience the relentless weakness and utter fatigue and brain fog for themselves. On those days when my brain clears, it feels like a miracle that I can think and talk and respond, almost like a normal person. Thanks for sharing, and caring. XO

  2. Wendy says:

    I don’t have ME, but I get it. Doctors recognize my main disease, but they have no idea what to do with it. I feel like they want to blame me because I don’t respond to treatments, or because I bother them when there isn’t much they can do. So I rarely go to the doctor for Meniere’s any more.
    I don’t have the severe fatigue all the time, but I do get it when I’ve had an attack. I’m lucky it goes away.
    I love the story of your miracles the postman brought. How timely!!
    I can’t listen to Jen’s talk, I’m sure it’s amazing.
    great post

    • Fleur says:

      Wendy, thanks for your comment and empathy. I guess you being a woman also doesn’t help, like Jen Brea says in her talk. If you follow the link, there is a transcript so you can find out what she was saying without watching (listening to) the TED Talk.

      I hope you are well today, love, Fleur

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