“But you don’t look sick”
My phone has this feature called Ultra Power Saver Mode, when you turn it on the screen turns to grayscale, background apps are closed, connectivity features like WiFi are turned off and the phone is reduced to a very slow, very basic version of itself. It can be a lifesaver, especially when you know you need to wait for that one important txt or call but you don’t have a charger handy.
I was recently talking to someone about my Chronic Fatigue and they mentioned how they don’t think I ever look or seem that sick. My first instinct was to retaliate and defend myself, justifying my position as chronically ill. I explained how I don’t leave my house, or even my bedroom when it is bad, and how if I am out and they are seeing me, it has likely taken tremendous amounts of effort on my part to disguise the illness.
At home later that day I was still fuming about having to defend myself to yet another person, I know they didn’t mean badly, but when you are used to a constant stream of non-believers, any question on the topic seems like an attack. And it got me thinking, how is it that I so effectively manage to portray the image of someone who is well, and how much energy must I waste doing so?
The next time that I was out socialising during a “not particularly great” day I paid closer attention to myself, trying to understand what is going on that I can feel so crap inside, but look perfectly fine to the onlookers. You know what it is? It’s my own personal power saver mode. When I’m tired but I know I have to get through a particular event I half shut down. My phone turns to greyscale and I stop smiling, in fact I minimise any form of facial expression. The background apps close, and my mind is blank, perhaps I can’t even hear the conversation happening in front of me, sometimes it doesn’t even sound like English in my head. The connectivity features all switch off and I talk quietly, only when I need to, I avoid eye contact, and for the most part I just let the other people use their energy while I sit patiently waiting until I can go home.
Perhaps someone may notice that I’m a little bit quiet, but they can easily put this aside assuming I’ve had a long day at work or, if they don’t know me, perhaps I am just shy. It’s actually amazing how much people will “ignore” (I say this lightly – maybe I mean, not notice) when it suits them. I think perhaps, we use our own experiences to form our assumptions, so chances are, unless I’m spending time with someone who is also feeling particularly unwell at the time, no-one will notice anything is different. I don’t mean this in a harsh way, more, it’s human nature to make the obvious assumption, and the obvious assumption, for most, is not chronic illness (thank goodness for that).
So next time someone makes that dreaded comment, “but you don’t look sick”. I’m going to take a deep breath and thank them, because it means everything is going just as I wanted it to and Ultra Power Saver Mode is working perfectly.