Most of my life I’ve been an insomniac. I don’t have the nice kind of insomnia that only pops around a couple times a year for a day or two, but the real serious kind where I can go over a week without sleep. That’s fine, I’m used to it. You grow up learning to deal with the sleepless nights and foggy days. It becomes normal.
It was my insomnia that taught me the hard way that people who don’t experience any kind of chronic illness themselves will not ever fully understand your feelings, your weaknesses. I had a teacher in high school who made me cry because of how unsympathetic she was towards my insomnia.
“When I can’t sleep, I just do work instead,” she told me. As if I could concentrate on writing for an Excellence grade (A grade, for you non-kiwis) when I was on my second straight week of no sleep. As if I could do anything else but be what was almost literally a zombie — and if brains worked for insomnia I can assure you I’d have stuffed my mouth with them.
But as a teenager with no authority against my teachers, I felt powerless and weak. Was it my fault for letting my insomnia get the better of me? My deadline stayed the same. I didn’t get a good grade.
Flash-forward to 2013, when I was finally diagnosed with Chronic Fatigue Syndrome. I had been through months of tests and confusions, too utterly exhausted to even make myself food most days. It was partly a relief to be diagnosed, but also completely awful. I knew that CFS had no real cure — you sure can recover from it, but it’s a damn hard road and it’s not guaranteed.
One of the biggest struggles I’ve faced, apart from my own utter inability to slow down and actually relax, has been an off-shoot of how people treated me and my insomnia when I was younger. Nowadays I’ve had the insomnia long enough that if someone tells me I’m not trying, I will rip their head off; but the fatigue was (and still is) quite new to me. I don’t know how to fight back yet.
At first I couldn’t stop telling myself I wasn’t trying hard enough. I made the mistake that, from what I’ve heard, is quite common to people new to their own CFS. I pushed myself. I though I could bounce back from the illness, like I used to be able to bounce back from colds and scrapes. In doing so, I exacerbated my condition so that I’m now much worse than I could be today.
Near the end of last year, crushed by the stresses of a full time fine arts course and an early morning barista job, on top of my own hobbies and wanting to spend as much time as possible with friends, I completely crashed. I crashed harder than I ever have in my young life. It wasn’t just mental, it was physical. My body basically shut down from the pressure — I spent more time asleep than awake, I wound up crying in bathrooms more often than not, I failed the latter half of my classes.
I completely failed life in a way I never thought I would. And yet, even with that breakdown still quite clear in my mind near a year later, I can’t stop telling myself that I’m not trying hard enough, that I’m lazy, that I’m making my fatigue up.
I will be completely honest: this is the fault of people around me. Not everyone — and not because these people have been malicious in intent. But it’s when friends stop inviting you to things because, “You’re always tired.” It’s when strangers say they know how you feel because they once pulled an all-nighter. It’s when your family asks when you’re going to start looking for a job. It’s when your own country’s welfare service puts more stress on you than your own life does. It’s when the media dehumanizes those you because you can’t work, because you’re disabled somehow.
It’s the people who told wee little Saf that her illness didn’t matter that make me continue to push myself against my own body’s limitations.
I recently read a few posts by others with CFS to try and get advice on what I should be doing to stop my health’s degradation. Everything I read told me that I am making myself worse by this very pushing that the world makes me think I must do. It’s my fault for trying, it’s my fault for not trying.
What is the point of all this? I want people who don’t deal with mental illness or invisible illness or any kind of disability to understand what their words — their microaggressions — can do to us over time. It’s not just one person, it’s rarely ever malicious, but they build up over time and they all hurt us. Eventually something you say may be the straw that breaks our backs. I’m still learning that I’m not weak, that I’m not useless, that I matter despite my fatigue. It’s taken months to try and erase the words that years have solidified.
When my counsellor asked me if I thought I was worth nothing because of my illness, I cried and said, “Yes.”