I have chronic fatigue. I don´t usually talk about it, though I don´t mind if people ask out of interest. I find I´d rather focus on what makes life fun and worth living. But this strategy has resulted in me feeling shameful. And that´s rubbish. This is who I am, this is how things are. I am doing the best that i can, and then some (but if that wasn´t the case I probably wouldn´t be in this mess in the first place).
There is value in communicating to others that my energy levels are not that of a normal person, whatever that is. I can´t work as much or hang out as often as I did before this kicked in (about 14 yrs ago now). If I let people know in advance, I won´t have to explain retrospectively when I have failed to meet their expectations. But also to normalize and take some of the stigma from it, like lead singer and songwriter of Belle and Sebastian does when he talks about his experiences with m.e. in this interview.
Or the way american buddhist nun Pema Chödrön does here:
“I had chronic fatigue for many, many years, and I’ve talked with so many people who have chronic fatigue, and they want to hear what my experience was. And honestly, you can have a disease like chronic fatigue, which is like having the flu all the time. You’re just about to come down with the flu. Your immune system is working overtime the way it does when you’re about to get a cold or something, and so you have that horrible feeling all the time where you just feel sort of flu-ish and achy and you want to lie down, and it’s all the time—you always feel like that. It’s horrible. But it can just be that. That’s enough, right? Sounds terrible.
Just that, that’s enough, but the majority of us, we don’t just leave it at that. Then it’s like, “But I used to be able to do all of this, and I could do all these things, and now I can’t do any because I’m in bed all the time.” High achievers get this disease, so high achievers have this sense of loss, that their whole identity was tied up with being an achiever and suddenly you can’t get out of bed.
So the pain of having the illness just gets exaggerated by feeling so disappointed that your identity has been demolished. Rather than being happy about it, you feel bad. And then along with that is what everybody else is going to think of you now, because they always thought I was this great accomplisher, and now I’m this sickly person who can’t do anything.
In terms of this identity that we carry around, believe me, without believing and identifying with our thoughts, the whole thing would fall apart pretty easily, into emptiness, into openness, into basic goodness. But it’s the thoughts that are like the bricks and mortar of our personality, that keep it solid and don’t allow us to experience the dynamic, fluid quality.”
The most wonderful reactions I have gotten was when I told Martin the first time met at a youth hostel in Galway. When we met up a few hours after our first conversation, he told me that because he new so little about CFS, he´d gone and read up on it. This complete stranger went to greater lengths than most of my friends at home had done. I was so tired of feeling misunderstood as someone who was just lazy or depressed. I felt so grateful I remember tearing up (thank you again, Martin).
My dear friend Randy posted this a while back. On top from the flattering feeling of being called a genius, I it makes sense to share this in this context:
I’ll just get this quickly out of the way: my friend Siw is a genius. I could spend the next few minutes explaining why this is the case, but I keep hearing “showing is always far better than telling”, so here is just one reason:
“Had some sort of an epiphany earlier today, more a sensation than a statement yet, something to do with this chronic fatigue giving me an inbuilt mechanism that hinders me physically to live a life that is not aligned with my values. It is absolutely impossible to push myself in the wrong direction, cause I get very ill and can't possible move or be active. Pretty neat ;) Medically it is super important for me to stimulate my parasympathetic nervous system by singing, dancing, resting, sleeping, connecting, tea drinking, creativity and love. Even if my spirit knew this, my mind is now tagging along to this beautiful conclusion. I´m guaranteed a wonderful life living in this way.”
In these few lines, she sums up exactly that which i have been struggling to voice over the past few years. More than struggling even, more like drowning in, where my gasping for air is more trying to cling to clarity of any sort and her words were the proverbial lifesaver ensuring I never sink. She has dealt with a different health issue than my issues, but the result is the same. My values are my truth and when I go against them, my body lets me know. When I live the way I know I should, I am not reactive, my body does not corrode from the inside out, my mental health does not suffer.
To conclude: Do I wish I didn´t have to struggle with this? Of course I do! I suspect my life would have been very different if I had not have to slow down. Perhaps I´d still be doing circus, and a lot more traveling and socializing. But this is also true: I love my life. I am grateful that I´ve had the chance to explore other aspects than I had time for when I was pogo-sticking through it. Life feels rich and meaningful and I love the people (and animals) in it. I still go on adventures, I just go at a different pace and take breaks along the way. It`s a slower kind of awesome, and shame has no place in it.