How Chronic Illness Has Affected My Sense of Self

There is a side effect of my condition that has taken me by surprise. I have adjusted to the uncertainty, the anxiety that surrounds knowing something is wrong with me, but not knowing what. I’ve learned to monitor my energy levels, manage my stomach issues, to smile politely and hold back the tears as specialist after specialist tells me they’re sorry, but they don’t know what’s wrong with me. That this all-encompassing illness that has affected every aspect of my life is still unlabelled is difficult, but what has shaken me is how strongly it has affected my sense of self.

 

I can no longer work, socializing is rare and anything I would like to do is surrounded by a caveat of “will I be physically able to do this?” – the answer to which is often no. Sometimes I feel hollow, a makeshift person stitched together by physical symptoms and controlled by circumstances, not a creative individual defined by hopes and dreams, passions and hobbies.

I am not my illness, but I am not the same person I was before I got sick either. The past few years have taught me a lot about myself, both positive and negative. While I stay ever optimistic that they will eventually figure out what’s wrong with me, part of me wonders what will happen when that day comes. My hopes for the future are so centered on getting better that it’s impossible to see beyond that. What do I want to do with my life? Where do I see myself in five years? 10 years? I know how suddenly you can be blindsided by things outside of your control, and how things you take for granted – working, socializing, hobbies, can so easily be taken away from you.

Having lost several years to this condition, I’m torn between a desperate desire to hit the ground running, a determination to not let a minute go to waste, to even now be working towards my dreams as much as I can and an empty, gnawing panic – I don’t know what they are. I sometimes feel as though I don’t know who I am anymore. For so long, everything has revolved around my health – so much so that I worry I’ve lost parts of myself along the way.

I read an article in last week’s The Sunday Times Style Magazine by Chloe Fox about the difficulty of post-cancer recovery, in which she discussed the importance of “the acknowledgement that this part of the journey is hard – harder in many ways, than the illness itself.” She quotes Dana Jennings when discussing a similar topic, remarking that “this isn’t about sadness and melancholy. It is more profound than that. Broadly, I have a keen sense of being oppressed, as if I were trapped, wrapped up in some thick fog coming in off the North Atlantic.”

This article so beautifully put my feelings into words that I felt as though I’d been punched in the stomach. I had been struggling with this sensation that I couldn’t verbalize for a long time now – something that, as a writer, I found extremely disheartening and confusing. I feel that thick fog surrounding me. I feel as though my core, my dreams, my passions and creativity are lost in it and it is too dense to see through. I grope blindly in the dark, hoping to blunder my way through it. I fear that I have spent so long learning to check myself to the limitations of my condition that I have forgotten how to dream outside of them.

I know that firstly, I need to be diagnosed, and secondly, treated, before I worry about post-recovery plans. I need to accept there may never be a post-recovery. Recovered or not, I still have this urge to reclaim myself. I want to do whatever I can now, whether it is just small steps or large ones, to work towards my dreams, whatever they may be. My illness does not define me, but in order for me to figure out who I am, I must navigate that fog of fear, uncertainty and doubt.

I have lost many things to this condition, but I refuse to lose myself.

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Thinkstock photo via artlazareva.