the mental toll of long-term illness

It has been 5 years since I got sick.

People get sick all the time, so this shouldn’t be a big deal or an important event. I was a pretty healthy kid, got my yearly dose of the flu-like virus that was going around for that year and that was all. I haven’t been hospitalised since I was a toddler who snuck away to jump on the bed and foolishly fell off (something I’m sure most toddlers do at some point… it’s kind of a rite of passage). My point is that any form of prolonged or drawn out illness was a completely foreign concept for me.

For anyone who is jumping to conclusions, no, I didn’t get cancer or some terminal illness. Nothing as devastating or serious as that. I got glandular fever. Mononucleosis. One little virus. Again, it shouldn’t have been a big deal. But it was.

I was in my final year of high school, and it was an important year for me. I was taking subjects centred around science and maths and was to sit four scholarship exams. I didn’t have time to be unwell. So when my throat swelled to the point that I could barely hear, eat or drink, I went to school regardless. I would heal, I assumed. The doctor said it was strep throat (even though I told her I didn’t think it was). She gave me anitibiotics (which didn’t work and gave me a rash), and the tests came back negative for strep.

Eventually the swelling went down (mostly, I still have lumps in my throat though) but I didn’t fully get better. I was tired all the time, and I would get pains in my joints, mild fevers and just general unwell-symptoms regularly at the slightest overexertion. Emotionally, I was numb. I couldn’t feel anything at all. I just stuck to my routine of get up, school, sleep. Someone suggested I exercise, so I went for a swim and was bed-ridden for a week afer. Coincidence? I tried it again months later with the same result. I stopped going out with friends with the explanation that I just didn’t feel well, but people started to question it because I couldn’t be sick all the time, could I?

After about six months of my parents and my doctor telling me I would be fine and I was overreacting, I got a full blown flu and couldn’t leave the house (or my bed) for two weeks. I remember one morning, very clearly, lying in bed and hurting every time I tried to breathe. Suddenly I was completely convinced that I would not get better from this. I was certain right there in that moment that I would die. It was like I could actually feel Death standing in the doorway, considering me, deciding whether to take me now or come back later. I was utterly terrified and… sad. Sad, that I wouldn’t get to find out what the world had planned for me. I looked at my life and realised that I hadn’t really planned anything for my adulthood anyway. I could never really picture myself living beyond adolescence, and this just seemed to convince me further that I was about to die. It calmed me a little, thinking that this was how it was always meant to be. Clearly I was wrong about that, but it helped me at the time. My mum walked through the doorway around then and said that she would take me to the doctor. I remember clearly that the sun came out from behind a cloud. The doctor took one look at me (I had lost almost 10kg in the two weeks I had been housebound) and sent me for a blood test at last (what I had asked for at the beginning).

Glandular fever had effectively killed my immune system. The flu I’d caught as a result had taken down my thyroid. This meant I was burning energy faster than I could put it in. There was not much they could do, I had to wait to heal, but it was good to finally know that it wasn’t all in my head and that I wasn’t overreacting. I felt justified in my silent struggle. I picked up a few more symptoms to add to the list – heart palpitations and panic attacks – but I stopped losing weight. And as long as I didn’t exercise, or go out, or do anything that remotely resembled a life outside of my room and my classroom, I didn’t get sick. I dropped all my extra curricular activites, even those I had stuck with for ten years. It probably should have hurt, but I didn’t feel much. It was necessary.

My grades ended up being really good. I found that I was too tired and empty to care much at the time. (I am incredibly proud of my achievements now though). I wanted to study medicine, but I knew I wouldn’t be able to. I’d had a year to become very familiar with what I was no longer capable of. I was very careful in my first year of engineering at university. I didn’t drink, I didn’t exercise, I didn’t go out. I went to uni, then I came home and studied. I got good grades, I liked what I was doing, I could live with that.

Then part way through second year, two and a half years after getting sick, I started to feel again. And if I thought I was emotionally repressed before all this happened, that was nothing compared to how it felt to have two years worth of feelings suddenly start to stir. There was a lot of anger and feelings of injustice, a lot of regret for the time that I had lost and all I had missed out on, regret at my loss of fitness, hobbies, friends. There was a lot of feeling misunderstood, because I would try and try and try to explain this horrible mess of feelings to people, to help them to understand, but there was just nothing there for them to comprehend. It was all “Yeah, we know you got sick. That happened like two years ago. But you’re better now.” It seems that being sick and out-of-action for so long isn’t really something you can understand well unless you’ve experienced it. Even though my body was finally starting to pull itself together physically, the mental damage of being taken down so suddenly and for so long ran so much deeper than the physical sickness.

So I coped the only way I could. I started drinking so I could forget. I was an engineering student, it was expected of me. That’s what I told myself anyway. After a year and a half of that, I was beginning to realise it was getting out of hand. It got to the point where I was having at least one drink every day, I was showing up to classes and tests moderately intoxicated and I was struggling to remember what I was supposed to be learning. I can’t actually remember what it was that triggered this epiphany (which probably says enough in itself) but from one day to the next I decided to stop. Which wasn’t very fun. And the fact that it wasn’t very fun was the most frightening part. I hadn’t realised that I was dependant. Mood swings, shakiness, paranoia, panic attacks, hallucinations. I lastest a month, maybe two, before I caved and just about coma’d myself with a bottle of wine. I was so violently ill that night. Apparently that was what I needed though because I haven’t needed to get drunk like that since. I still drink, on occasion, but it doesn’t have nearly the same attraction for me as it did, I don’t crave it, and I don’t lose control like I used to.

I started running last year.

It seems insignificant, but it really isn’t. The fact that I can do this, without getting sick, that I can actually start to work on bringing my fitness levels back up, that I can actually do something to get physically healthier is a massive achievement and a huge weight off my shoulders. I’m not a fitness freak, but I was always active, and I absolutely hate it when I can’t do something, so this was a huge deal. I was taking back control. I would be all right. And a couple of months after I had started running, I woke up one morning and I realised… I felt content. I could face the world today, and I wouldn’t just be tolerating it. I felt as though I could begin to participate in life again. That morning, I looked at my ceiling and I decided, finally, that I was better. Almost four years after I got sick, and I was telling myself that I was fully recovered now. I was okay. And I was.

A year later, and I’ve hardly thought about the time when I was sick. The experience has definitely changed me and perhaps made me a harder person than I was, but I have learnt so much about my body and how people cope with illness. This post is really just for me to express my gratitude that I did finally get through that mess even though there were many times that I thought I never would. I hope that it can help someone who is struggling to hold onto the hope that there is an end to the pain, even if it’s a long journey away.

But really, the most important lesson I’ve learnt from all of this is to take care of yourself and listen to your body.

Q

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2 Comments

  1. I have been recovering from a bout of mono (aka glandular fever) for almost two years. It’s certainly taken its toll on me physically and emotionally. It was so healing to read your post. Thanks so much for sharing. I wish you continued wellness.

    Like

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