Illness can morph you without your consent
Crohn's & Colitis Australia Ambassador Jacinta Parsons shares her struggles with Crohn's disease and how it has shaped her.
When I was first diagnosed, I was told that Crohn’s disease was chronic. I looked that word up. Chronic: “Persisting for a long time or constantly recurring.” I shrugged, “No big deal” I thought. The idea of a long time didn’t compute when I was in my early twenties. Because “a long time” doesn’t really exist when you’re young.
What I now know is that “chronic” is the great trick. The sleight of hand. The kicker. How does something never really be over? Just when you think you’ve survived what it might deliver, you’re quickly reminded that the story is a continuing series of tests. Each test seemingly unique. If there is no end, then somehow you must welcome this fiend as a permanent lodger. You must ask it to join you, without resistance, as if it was always supposed to be that way. The joke is on you.
And for many with chronic illness, the “sickness” is largely unseen. For those living on the outside, it is an elusive, shadowy figure. Almost a myth. And you are often faced with people who have a covert suspicion about whether it exists at all.
I spent almost a decade, in my twenties and into my thirties, trying to find a way to live well with illness. I was in and out of hospital over that time. For a while, my life felt like it had been rolled flat. I was totalled. Everything that had identified me until that time; a student, a friend, a worker was now in relational proximity to being sick. I had become someone who needed to be cared for. I felt humiliated.
Illness has a way of reshaping us. It can redefine who we are. And you need to watch closely because it can morph you without your consent. It can steal you away from yourself.
For many years, it was difficult to hold down work and so it was difficult to pay the rent. There is a vulnerability in this that is frightening to recall. And it’s sobering to think that society is littered with the chronically sick, people who can’t reliably make the rent. When I volunteered with a food relief charity years ago, it was remarkable to hear how many stories began with illness and followed with losing the life they had once known.
So, when I began to creep back into the world of the well, as the flux of the illness allowed, I knew there was going to be little to no allowance for me to flip flop between worlds. Because hardest of all is trying to maintain your dual identity. It is much easier to choose a side. And if you choose to live “well”, then the expectation is that you do it without compromise. So, when I was well enough to walk back into this world, I decided that I would stay there at all costs.