Written by Clare Jessup
Graphic by Steph Beer
CW: chronic illness, death, mental health.
This article was originally published in ‘Turning the Tide’, Bossy’s 2019 print edition.
What the hell does that even mean?
When someone asks you, “are you well?” they’re expecting you to say, “yes!” because they assume that wellness equates to health; but it doesn’t. Whilst they impact each other, they are two completely separate states of being.
We are so obsessed with achieving and maintaining ‘perfect health’ to maximise the longevity of our existence that we often fall into living a superficial life. We are obsessed with the notion of constantly moving, of being bigger and better than we were the day before. People pass comments of “I’m here for a good time, not a long time” as they down their umpteenth shot of god knows what at the bar on a Thursday night. But they still believe that the ‘best life’ is a ‘long life.’ This also means that when we are sick, we often view it as a negative. Don’t get me wrong; being ill is inherently negative in its posed threat to the attainment of this aforementioned ‘best life.’ However, I want to talk about why we shouldn’t see sickness as a hindrance to the rest of our lives. Because you can most certainly be well whilst being sick.
I have Cystic Fibrosis, which is one of the most common genetic conditions in Australia that primarily affects the lungs. 1 child is born with CF every 4 days with an average life expectancy of 38 and there is currently no cure.
But who gives a shit? Yeah, it kind of sucks not being able to run down the pitch as fast as I could last week, because my new medication (which I spent years campaigning for) is working the opposite of how it’s supposed to. And, yeah it sucks to have people dying around you at alarming frequency. But for the love of god, please do not feel sorry for me.
“Oh, honey I’m sorry!” has been expressed to me relentlessly, and as genuine and empathetic a place that it is coming from, I cannot stress enough how much I don’t not want to hear you say that. Sorry? Why? For what? I can tell you now that people who go through this kind of shit and live with uncertainty generally have a much greater and deeper appreciation for everything around them. Someone can live for 100 years and never gain the life knowledge that a chronically ill person can gain in 10. The premise of ‘sorry’ just further engrains the belief that a long life is the best life – that probably isn’t what we’re getting so quit raving about it. You and I both have the same chance of being hit by a bus tomorrow, and all either of us would have experienced or be remembered for is what we have done up until this very moment.
See living with a chronic illness you can do one of two things, as cheesy as it sounds.
You can laugh, or you can cry.
Seriously, you can get really freaking bummed at your luck of the draw, or you can play the hell out of the cards you’ve been dealt.
That isn’t to say that I don’t experience depression, anxiety or have times when everything just feels so hard, nor is it to say that experiencing these somehow lessens your strength or validity. It is, however, about bringing yourself back to being ‘okay’, regardless of your level of mental or physical health at any given time. To learn and understand that you will always be ‘okay,’ as long as you let your measure of ‘okay’ change and grow alongside you no matter your state of health.
There have been times when I have completely broken down in front of my closest friends, and far out am I lucky that I have people who make me feel I can show that side of it all. Showing this kind of vulnerability doesn’t come easy to many people, myself included, especially those of us living with a chronic condition: the guilt. It’s the suffocating feeling that confiding in someone to talk about the raw and darker parts of your experiences is placing a burden on them. They might love you beyond belief, but that’s just all the more reason you want to spare them. So, instead of splitting the pain into a few little needles, you walk around with one big sword in your chest. You cannot live your life with that sword in your chest. Because one day it’s going to go all the way through, and all the people that could have taken just a small needle are going to feel like that sword has stabbed them. Part of being ‘okay’ is talking to people, whether it be friends, family, psychologists, counsellors, your dog, psychiatrists, whomever about everything going on in your mind. If anything can be taken from what I’ve written thus far, it should be that we all grow a little stronger from the small pricks of a needle knowing that we all feel the same, and we will all be ‘okay.’
That is what I think ‘wellness’ is: being in tune with your mind in a way that, regardless of your state of mental and physical health, you are focused on the one hundred million other parts of you that make you who you are. That you know you can and should feel every emotion, that each and every one of them is valid. You don’t need to be ‘saved’ by some pyramid scheme. You don’t need to buy 10 different commercial ‘cures’ to maximise your chances of catching up to the pack and return to flogging yourself in this cruel societal obsession with constant self-development. That’s not to say that you should just give up on your studies forever or never work again and fuck the system – because realistically, you need to contribute to the society you’re part of if you want to benefit from it. But if you need a break or a change, don’t let the gruelling race for hyperbolised betterment persuade you to stay in something that’s not the best for you. Companies have tried to package ‘wellness’ as a foreign product that only they can provide, but you have to realise that it is something you actualise yourself. You need to allow yourself to practice whatever it is that makes your eyes sparkle and your cheeks dimple. So paint your wall, pat your dog, make your own playlists – heck, make your own songs! You might be sick, but just listen to yourself sing! You might be dying, but god can you dance! You might be losing your sight, but never forget that everything you saw is something special, experienced only by you. You might hate your scars, but I’ll be damned if you don’t realise that each one of them has allowed you to be here today.
So, back to you and I sharing the same probability that we could be hit by a bus tomorrow or knocked unconscious by a $2 coin dropped from the balcony above us, we should all live like we have one year left to live. I don’t say like we have one day to live, because to be perfectly honest that final day is going to be filled in the most unexpected ways – so act like you have a year. A year to explore, to party, to learn, to love, to cry, to rest and to give back. Don’t wait for exams to be over before you start enjoying life again, don’t make a list of things to do when you have the time; just bloody do them. You literally have all of the time. I hope you fall in love with just being alive. As a recently passed idol of mine, Claire Wineland, said, ‘you shouldn’t wait to be healed to start serving humanity’ (and this humanity includes yourself!).
So, wellness will still grow and shrink constantly with successes and failures, hopes and crushed dreams. Just never let yourself forget how it feels to be ‘well’, and you will always be okay.
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