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What My Boyfriend Reminded Me of When I Lost My Sense of Identity to Illness

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Two years ago, when I was 17, everything was going to plan. I was head girl and music captain of my high school, had just performed a lead role in my high school production, was the leader of my school orchestra, and was intent on going to university the following year to get into medical school. I knew I was busy, but I was successful – and that made me happy.

Then, with three months to go until I graduated, I got glandular fever. At first I was just a bit pissed off, as I wouldn’t be able to study for a few weeks – but heaps of people get it, and they’re fine after a few weeks, right? However, as the weeks passed, and I continued to get worse, I started to get worried. Even when the acute illness passed, I continued to get extreme post-viral fatigue and headaches that lasted for nine months.

That period passed; life went on. I gained entry in medical school, and life went back to being successful. But, as chronic illnesses like to do, it came back, and hasn’t gone away.

People not understanding what I’m going through is hard. The chronic headaches are hard. Trying to find a balance between living life and not relapsing is hard. The uncertainty of whether I’ll be able to get through medical school is hard. But above all else, the hardest thing was the despairing feeling of losing my sense of self.

Overnight, my life was taken away. Who was I now – now that I couldn’t play piano, get the marks I was used to, party with my friends, or tick off my tramping bucket list? Who would want to spend time with me, when I couldn’t “do anything interesting” with them? How was I going to get happiness without being able to do the things that made me happy before?

We live in an externally focused society, where the definition is success is having a well-paying job, interests, an active social life, and a clear path for your future. These, not surprisingly, often don’t work well alongside a chronic illness. The effect that this had on my mental health surprised me; I hadn’t realized that my identity was tied so closely to the activities in my life. I started to think that it was impossible for me to find the same level of happiness that I’d had, and accepted that I’d have to settle for less.

The turning point was when I brought this up to my boyfriend in the middle of a fatigue-sponsored cry.

“I’m not me,” I choked out, “I don’t even know who I am anymore.” He was quiet for a moment, before pointing out that I have been, was, am, and will always be me – regardless of what external factors I fill my life with.

It may appear to be an obvious thing, but that single sentence completely changed my outlook on myself, my mental health, and my illness. Changing from an external to an internal view of my identity has given me the permission to reclaim myself, and to look internally for the things that make me who I am – my personality, how I care for my friends and family, what I value in life. That in turn allows me to be nicer, happier, stronger, and prouder, regardless of what I’m able to do from day to day.

Living with a chronic illness is a battle, but when you’re your own number one supporter, it gets a whole lot easier.

Getty Image by fizkes

Originally published: August 13, 2018
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