I was thirteen when I started getting sick. Prior to my teenage years, I’d miss three to five days of school a year. At my worse in high school, I was missing three to five days a week. By the time I was eighteen I had been told by medical professionals to drop out of school or lose what remained of my health forever. Therefore it’s somewhat unsurprising that I don’t have my graduation certificate.
It took me years to get diagnosed with what was wrong, and no wonder. It started with a bout of bad glandular fever at thirteen, and Epstein-Barr at fourteen. My biggest symptom was severe stomach pain, which was diagnosed as a side-effect of endometriosis after eighteen months of tests. I should point that at the time eighteen months was considered a quick diagnosis for endo. And even after that ordeal, my endometriosis still had to be controlled by a process of trial and error (lots of trials from my doctor, lots of errors made by me).
As you can imagine, being sick didn’t do any good for my mental health. My anxiety skyrocketed. I can remember hoping my friends didn’t contact me while I was sick because I was so scared that they would suddenly see me as a weakling. My depression preyed on any sense of hope I had, as I began to imagine a future where I was stuck at home watching television for the rest of my life. Even on the days I was well enough to go to school a sense of dread filled me. Why did I even bother? I didn’t feel like anyone wanted me there.
Leaving school was a blessing in disguise for me, as I made a decision to not focus on my illness, and instead focus on putting what little energy I had into meeting the cast of my favourite TV show; a news-type thing called Hungry Beast. Turns out by being fangirl-y enough, and nice on Twitter enough some dreams do come true, and I ended up being able to meet most of them. Powered by the confidence that gave me I got a job. And started studying Journalism. And spending all my free time with friends.
And if my life were a Hollywood film, it would have rolled credits then and there.
But in reality, my sickness started catching up with me. By the time I hit my second year of studying I needed stronger medication for the endometriosis and my doctor started to notice I was no longer processing iron properly. He started me on iron tablets to no avail. Cut to a few years and a bunch of unsuccessful attempts at different procedures and medications later, and I find out that my liver can no longer cope with the pain medication I use to tame the extreme pain that is endometriosis.
The next few years are waves of health and sickness, pushing myself to appear healthy and then crashing as my body reminds me I’m not. One of my friend’s mothers in high school said that she would love to be chronically ill, “It’d be so much fun to lie on the couch all day.” I was so angry with her at the time, but now I just worry that that’s all people see in me.
I spend so much of the time worrying that people see me as lazy or worthless, so I try to combat it by pushing myself, only to become sicker. I worry that people will think I don’t like them or care about them when I cancel plans when the reality is I’m at home wishing I could see their faces. I worry that I’m not good enough for my friends, and sometimes their patience and loyalty truly baffle me when they still offer support after twelve years of this. Most of all I worry that people will leave me to live their lives when I haven’t even begun to fully live mine.
I think my friend’s mother thought that I spend most of my time relaxing, and from a certain standpoint that is true. There are days when I am up for an hour before needing a three-hour nap to have the energy to continue. But mostly that “relaxing” is finding a way to live vaguely normally: to make sure I feed my partner and myself, to make sure I have clean clothes, to write in my blog, to keep the house vaguely tidy. Then there are the doctor’s appointments, and the endless tests, and people’s almost constant advice until that too dies away.
In the end, your life becomes smaller. Big dreams are forced to narrow down into small goals. Group catchups are forced into individual brief chats at your home. Independence becomes reliance on others. It hurts and it frustrates.
I’m lucky. I still have some hope that one day it will change, and for now, that hope has to be enough.
It’s rare that I do this, but I’d like to dedicate this blog to those who have got me through my illness by visiting me when I was sick, by dropping off school work when I was too sick to be in school and by being there for me to talk to over the years. Without you all, my life would be utter misery. Thank you!