As a person who is part of the chronically ill community, being in Australia right now feels like I’m being forced to live in permanent isolation.
Since March 2020, my quality of life has decreased drastically. Watching a pandemic take away two (probably three) years of however many years I have left to my name as a stage IV cancer patient has been gut-wrenching.
I’ve had to deal with the battles my stage IV cancer diagnosis has presented me, while not being able to live my life in the way I used to. Low lit restaurant dinners, bars for knock-off drinks and even Uber rides have been replaced with dinner at the dining table, drinks in the kitchen, and well, the couch.
Even when I could enjoy some semblance of life, like seeing friends and family, it was never without my mask in tow and anxiety bubbling under the surface of my skin. Every cough, sneeze and blow of the nose had my eyes darting for the source and a calculation of how many metres were between us.
There’s nothing more humbling than a cancer diagnosis to make you straight up face your own mortality. So, for two years, I’ve been stuck (restrictions permitting) in the limbo of wanting to enjoy life and swaying to the side of caution because any wrong step affects my ability to access my treatment and threatens my life.
The latter is the side I sit on now and have been since the start of December 2021. I’ve been in a self-imposed lockdown because our leaders, who touted from the beginning that it’s our duty as Australians to protect the vulnerable, have left me no choice but to fend for myself because no one else will.
Do I want to be in a self-imposed permanent lockdown? Absolutely not. But I do it because I know it will keep me safe and I don’t want to risk my health. I simply can’t afford to succumb to the inevitability of contracting COVID. As cases sweep NSW, I can’t laugh it off and share memes about when it will fit into my social calendar as others can.
If I get COVID, it will land me in hospital. I know this because my body struggles to fight a simple fever. It could also present me with long lasting side effects — all of which I don’t want because I already live with a chronic illness that takes up all my time. So, I stay at home so I can continue my treatment which keeps me alive for the time being.
To put it bluntly, the mentality of ‘letting COVID rip’ is pure eugenics and ableism. It sends the message that immunocompromised people, the elderly, and those with ‘underlying health conditions’ are disposable. That our worth doesn’t match our counterparts. It makes me and my community feel expendable — and in the eyes of the world, we sadly are.
The way the world sees and treats disabled people to be less than those who are non-disabled is arduous. It’s important to acknowledge that on any given day, anyone can join this group. Many will, because what we’re witnessing at this moment is a mass disabling event where some will live with lifelong effects from COVID. Only then will these individuals understand what it’s like to live in a society that ignores your existence.
It’s lonely being a person who is chronically ill right now. It’s lonely and exhausting having to defend myself, my life and my worth.
The world outside my window is a major risk to me, not just because the virus impacts how I go about my life, but because my health is my life. To hear people, as well as our leaders, claim no care for it, hurts.
My life is just as valuable as someone who doesn’t have cancer. And yet, if I were to die of COVID, the reason for it would be reduced to the phrase ‘underlying health conditions’; a numbing set of words that don’t do those who have died at the hands of this disease justice. These people didn’t die because they had underlying health conditions. They died because they contracted COVID. Period.
I’ve witnessed doctors and nurses behind N95 masks and full PPE, with swollen feet and sore backs because of the back-to-back shifts. ICU is surpassing breaking point. Ambulances are being prioritised for COVID patients. While those who are chronically ill must face the cancelling and rescheduling of infusions, therapies, and surgeries. Our system isn’t coping. It’s already broken, and I’ve witnessed it as a patient firsthand.
My community is scared, not only of contracting the disease but also about what the rising Omicron cases are doing to a system that we rely on. It’s about access to care — care that is imperative to our quality of life. From receiving chemotherapy, to having aid workers, to drivers, to relying on supply chains. It all adds up. And now, that care is under threat and, in some cases, not given or accessible at all.
It’s not only my community that has been failed by our government. Our entire society has been let down. There have been years to prepare. Years to think of possible scenarios and strategies. Yet it hasn’t happened. The government we instilled our trust in to prepare us, has let us down.
How many more variants will it take? How many more deaths? And yet my community will still suffer the wrath of ‘Well then, how do we live? You can’t live in a bubble forever!’ It isn’t a fair thing to ask.
We’re left with our noses pressed up against the glass of our windows; our homes the only place keeping us safe. Yet the non-disabled can pick up that freedom from where it was left, like pressing play on a song that’s been on pause, whereas for us there’s only silence.
I don’t have the answers on how to fix it, because how can I? But I do ask for this: that those who are non-disabled, pay attention to what is happening and listen to our experiences. Commit to unlearning the ableism that is instilled in our society and understand our feelings. And most of all, stand in solidarity.
Natalie Fornasier is a freelance writer, skinfluencer and advocate. You can follow her on Instagram here.
