I live in a busy, social, 5.5 person, hippy sort of share house, and it's had some pretty fun times. But it is a big challenge with chronic fatigue. I do really like most of my housemates most of the time, and I also rely on them to bring home veggies from the farmers market, cook food, do dishes and cover my share of house-jobs when I'm feeling really low. However there are many days when I just don't have the energy to talk with actual real-life humans. (On days like that, I only talk to dogs and the internet) I'm sure that other chronic fatigue sufferers would understand. Or just imagine how you feel like talking when you have a rotten flu. Some days I can only grunt in greeting whilst I heat up a frozen meal on the stove as quickly as possible, then slump back to my room to eat it and lie back down again to recover from the exertion.
It feels really rude, it happens quite a lot and I stress about people misinterpreting me as a grumpy-bummed people-hater.
So I came up with the idea of the “I'm not Here Hat”. I sent the following message to my housemates:
“Dear housemates and frequent-dropper-innerers. It is time to introduce the "I'm Not Here Hat". Its blue and white and stripey. It is not an unfriendly hat. Its simple message is that 'I'm not here. It's not that I don't love you, nor wish that I could talk with you or clean up dishes or do things, its just that my energy gauge is very close to zero warning lights are flashing about current, or impending crashes into the Fatiguey Pit of Doom. I'm only out of my room because I need a cup of tea / food / to go the toilet'. If I'm wearing the hat, you can act like I'm not here. If you'd like to communicate with me, try sending a text message, just like I wasn't here. When things get dire I'm still usually able to text message.. Of course, if I'm smiley and chatty whilst I'm wearing The Hat, I've probably just forgotten to take it off, and you don't have to ignore me, that would be weird. And it does not apply to other hats I may wear, they might be to keep the sunshine out of my face”
I was quite proud of my hat idea, and wish I could have thought of it when I was under the pump doing assignments and lesson my teaching degree online last year, and the only desk in the house was in the shared lounge room.
But then the next day a neighbour-friend dropped around. I heard him from my room. I sent him a text message saying: “I'm too sick for humans today, but help yourself to a cuppa and whatever”.
And then I began to feel terribly lonely.
I had just asked my housemates to pretend I didn't exist.
What a stupid idea. I'm not not here! I am here! I am real and I'm a whole real person and I don't want to be ignored! I just temporarily don't have the physical capacity to speak or interact with anybody. Especially anybody who wants anything normal, like conversation or a pleasant smiley interaction. It sucks that the the only solution I felt was possible was to isolate myself from people and ask them to pretend I didn't exist. It's not the “I'm not Here” Hat. It's the “I'm a really really really sick person hat”.
So I updated the message. But I'm still not sure how to deal with intense feelings of isolation and loneliness that accompany the severe energetic limits on my interactions with real life humans. Chronic Fatigue can really suck.