'Please stop telling me we’re all going to get COVID. I don’t want to die.'

I’ve been unsettled this new year. I feel close to tears, bored, restless, joyful, excited, sad and worried. Why? Because COVID is rampant, everyone has pandemic fatigue, and I’m immunocompromised. 

I have myalgic encephalomyelitis – a disabling neuro-immune disease usually triggered by viruses. Last time I got the flu was in 2014. I couldn’t move for two weeks, and it started a chain of events that ended my career. I lost the use of my left leg for a while. My brain hasn’t ever recovered. This is unusual, but it can happen to anyone. It did to me.

Here are the stats: researchers across the globe have found that 20 per cent of previously healthy 18 to 34-year-olds have ongoing symptoms after contracting COVID. Up to one third of people who contracted COVID but weren’t hospitalised, have had symptoms up to three months later. This figure is higher including those who do end up in hospital. 

Most of us will survive Omicron. But a huge number of people are about to become disabled. 

Watch: The signs to use when talking about COVID. Post continues after video.

If you’re one of the 20 to 30 per cent who don’t recover from COVID – are you ready? Have you checked your sick leave? Do you have income protection insurance? Do you have total and permanent disablement insurance? Do you have people who can care for you if you can no longer manage daily tasks yourself? Are you taking these questions seriously? Or do you think, as I used to, that you are different? You’ll be fine because you’re 'healthy' and 'strong'? You eat well, you exercise, bad things don’t happen to you. And Omicron is 'mild' anyway, isn’t it? 

There is no data about how the Omicron variant affects these long-term risks, but as asymptomatic or mild cases of COVID can result in long COVID, Omicron seems likely to continue the trend. 

My loved ones ask me if I’m worried about COVID. I am. What they’re asking is – am I going to die if I get it? I don’t know. My doctors have said that me contracting COVID would be "catastrophic". But they don’t really know what they mean by that and neither do I. No one does.

Maybe I could die. Maybe I could be bedridden for a few years. Maybe my left leg could stop working again. Maybe I could be fine. I feel pressure to ease everyone’s anxiety about this because they are sick of worrying about it. I am too. My partner and I have made our COVID plan about which of my doctors he should call and which hospitals we should go to if things get hairy. That’s all we can do.  

Alice and her partner. Image: Supplied.

But when people say with resignation "we’re all going to get it" I feel distressed. I’ve only just named this feeling after hearing this phrase over and over during the Christmas break. Of course people are saying this. It’s what we’re being told. We can only sustain anxiety for so long. Everyone has sacrificed so much over the past two years. 

In Australia, those sacrifices were paying off. But now, the government has ensured that we can no longer avoid the threat of COVID. Everything that is happening was predicted. At every turn, the government has dropped the ball. They seem sick of taking responsibility for COVID too. 

Please stop saying "we’re all going to get it anyway" to me or other immunocompromised people. It feels like you’re saying: "Look I realise you might die, but I’m sick of worrying about it". I’ve never felt so lonely and expendable.

Instead, try saying, "We can only do what we can do". Then do what you can do. Take precautions. Check in on immunocompromised loved ones.

Of course, we all needed Christmas, we needed to see our loved ones. I know I needed to cuddle my family, my friends and their babies I hadn’t met. But did we need to end all restrictions and allow unvaccinated people to circulate indoors from December 15? Could we perhaps have kept everyone safe until Christmas so everyone’s family meals didn’t become spreader events? 

"But it’s inevitable," everyone keeps saying. I studied history for long enough to know, that most things are not inevitable. It’s just easier to say that than to lay responsibility at someone’s door, or take responsibility or imagine a different outcome. Things didn’t have to be this way. But now that they are, please take care. Take care with your language. Take care with your actions. 

And to the new cohort of people about to enter the disability community after contracting COVID: I’m sorry this happened to you. When you are ready, there is a beautiful, supportive community waiting for you. 

Alice Rumble is a disabled writer living with ME/CFS in the Southern Highlands of NSW. She has worked as a solicitor, an Associate to a Federal Court Judge and a researcher in law and history. Alice shares her stories about disability on Instagram at @alice_rumble.

Feature Image: Supplied.