There’s a tendency, especially by able-bodied people, to frame chronic illnesses as tragic and life-altering—the former is debatable, and I can’t speak to the latter as I’ve always lived with the symptoms of my chronic illnesses. But if I had to sum up my experience of chronic illness into one word, it’d be:
Sheer, utter, monotonous boredom.
(Although, the slightly tragically funny part of boredom is that it is a stone’s throw away from depression. But on that some other day.)
Waiting around in doctor’s offices every week is boring, unless you enjoy watching a random episode of Married At First Sight. Waiting for your blood to be drawn is boring, unless you have a panic attack at seeing and feeling the needle pierce your skin. Waiting for your medication at the pharmacy is boring, though at least you get to people watch. Waiting for a pain flare to pass is boring, though pain is pretty good at keeping you preoccupied. Waiting for your energy to return—just plain boring.
On average people have about ten hours of useable energy per day; I have about half that. Which means that I spend a lot of time lying in bed flicking back and forth between Netflix, YouTube, my favorite celebrity gossip sites (that’d be laineygossip.com, which I highly recommend), Facebook, Instagram, and half a dozen other things without actually watching or learning or doing anything. I always tell myself that I’m going to learn something new or do something different, but I never do because that requires energy, or that I’m going to spend that time thinking, which I also don’t do because that also requires energy.
Recently, a work colleague was talking to me about his money problems. Despite the fact that he makes good money, a solid income that multiplied by two minus no kids would put him and his fiancée in the top five percent of the Australian population, they have trouble saving. He asked me how do I do it. How am I so good with my money? When I go out to eat and wander around in the stores, how do I keep myself from buying stuff?
Simple, I told him. I don’t have the energy to go out after I get home from work. And after groceries and my mortgage, the thing I spend the most money on is doctor’s bills. He stared at me for a few seconds before asking, so do you go home and go to sleep at like five in the afternoon? No, I told him. I just…watch a lot of videos and read a lot of internet articles?
He stared at me again, this time for a bit longer. And what about the weekends? When I looked up at him, he seemed genuinely concerned. Um…I lie around and rest in between chores? He continued staring at me, either because I’d just blown his mind or he was trying to decide how to judge me or both.
Sometimes I notice that because of the boredom of chronic illness, I’m becoming a boring person in the eyes of able-bodied people. I have no hobbies, unless you count learning about my body and doing yoga everyday to prevent it from falling apart even more a hobby. I wake up, do some yoga, (barely) make myself presentable (and most days I don’t even do this), go to work, come home, and go to sleep. Whenever I mention to my able-bodied friends that I don’t have the energy to go to do the things they do for fun—talks, community workshops, pottery or dance classes, shows, movies, shopping—they do that thing of staring at me for a few seconds before moving on.
Is that tragic? Maybe, in the eyes of some. But mostly, it’s just…boring.