Real Talk: Chronic Illness

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.

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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!

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12 Comments

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  1. I can not express to you the sympathy I have an understanding of your situation. Not sharing the same disease but sharing the same life symptoms. I haven’t traveled outside of my home in years now. Except for two hours a month to pay a few bills. Two very painful hours that I try to enjoy with all that I am. The lack of friends now, the understanding and humiliation that comes with anyone having a complete lack of understanding of your issues and not wanting to go into any of it over and over again to try and explain yourself somehow.

    That mother who said that… Uhg… How angry you must have felt (I’ll feel angry for you if you don’t anymore).

    Thank you for the bravery of writing it all out. That hope is amazing and awesome to have. I have hope also! It will be okay someday… Only need a few things to work a little bit! 🙂

    Liked by 2 people

    1. That sounds really tough. It’s so difficult to cope with that sense of isolation. I’m lucky to have a partner and cat who I live with, and friends who try and visit, but during the week when they’re at their jobs I still feel alone. I often even feel jealous of their ability to work full-time.

      I was actually in the back of the mother’s car when she said that. It took everything I had not to kick her in the back of the seat. I appreciate the righteous anger 🙂

      I’m glad there is hope in your situation, and I hope those things will start working 🙂 Thank you for your comment, and for your support!

      Liked by 2 people

  2. Your insight is invaluable. As you said, like your friend’s mother, many of us don’t understand chornic illness, how it affects your ability to live life as you please, or how it affects your mental state. A LOT of us wish we COULD understand and are fully aware we never really will; but, this, YOUR OWN WORDS, are as close as we can get, and it means a lot. Please, never undersell the value of your perspective, opinion, and your voice; it’s a catalyst to change~ Thank you for being brave, frank, and open about such an intimate subject.

    Liked by 2 people

  3. The shortsightedness of your friend’s mother makes me furious. One should never consider chronic illness to be a privilege for being lazy. I’m sure she wouldn’t have said that if she’d really stopped to think about it.

    Thanks for sharing your story. I hadn’t thought of endometriosis as a chronic illness before, so your post has given me a new perspective. It was also cool reading about how your interest in journalism got it’s start.

    Liked by 1 person

    1. I definitely think that what she said was borne out of ignorance, but it made me so angry that she wouldn’t take that time to stop and think.

      In terms of endo being a chronic illness, it’s definitely something that affects people long term and in many cases isn’t curable. Having said that, it affects many people in different ways, and it’s a fairly common misconception that most women only suffer pain from it during their periods so it can be seen as something that doesn’t have a major effect on sufferer’s lives. In my case, I have endo pain for at least half of every month if not more, so it’s much more severe than many people would guess initially. I’m hoping that helps give a bit more insight 🙂

      I’m glad you got something out of reading this! Thank you for taking the time!!!

      Liked by 1 person

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