'No one wants to talk about long COVID anymore. Except those of us with it.'

Listen to this story being read by Erin Docherty, here. 

There is a quiet emergency happening in a few thousand Australian homes.

It's so quiet that often not even close family and friends are aware of the extent and depth of the crisis.

But its impact on every aspect of daily life is profound and shocking. So shocking that it's awkward to talk about it, even with people you’ve known your whole life.

When you tell the full story of what it’s like living with long COVID, there's a stunned hush. Then everyone, not knowing quite what to say or do, cautiously slides off the topic.

Watch: Data from Australia's longest-running post-COVID clinic has revealed a high proportion of patients are women in their 40s and 50. Story continues after video.

Even your GP appears to find the topic difficult.

You get it. People can't tolerate that much weirdness and despair.

There's no language to communicate the full experience. There are no pre-packaged words that well-meaning people can use to register understanding. 

'Get well soon' doesn't quite cut it when this disability can carry on in its severe form for months or years.

People might look like they've heard your story but then you need to repeat yourself as memories fade and people forget. The education work is endless and exhausting.

Every time you repeat the story to the same people, they express the exact same level of surprise. You remember the first and second and third time you told them, so witnessing the same reactions over and over is starting to feel like Groundhog Day.

You constantly have to throw off social norms to defend your right to not be re-infected by the virus that disabled you. It's uncomfortable, so you judge whether it's worth the effort for each social event.

You nervously avoid crowds. You wear N95 masks. You watch as most of the measures that make it safe for you to leave the house and socialise are dismantled one by one.

You feel like you’re living in a different universe to everyone else. You were perfectly healthy until COVID hit, and now you’re a shadow.

By being randomly struck by this condition, you are an outcast. No one knows how to deal with you anymore.

People and employers might offer accommodations but it's clear to everyone that there are strings attached, and that this is only temporary. You are very aware that you are on borrowed time.

You have to spend a lot of emotional energy making sure all your stakeholders are happy because you know (and they know) you aren't entitled to any real help. Magnanimous generosity starts to feel a lot like an 'I owe you'. You use up all your leave and that's when the financial pinch starts, and the fear.

Your instinct is to hide it, but this condition wrestles control away from you right down to the very basics of being able to make eye contact, drive a car, sustain a conversation, make a cup of coffee, go for a walk, watch TV or read a book. Sometimes it's even hard to tolerate the feeling of clothes on your body.

And, naturally, the most disabling and weird effects of the disease randomly come and go with no warning.

It's impossible to communicate the nature of the beast without living with it and seeing it with your own eyes.

It knocks your confidence. You start to doubt whether you really deserved that promotion, whether you can go to the gym, whether that family event is a little too much. Is that brain fog or are you just a lot slower than you thought you were? Are you breathless with a racing heart or is that anxiety?

Your world gets smaller.

Not only are you overlooked by governments eager to pretend the pandemic is over, but doctors often have no clue what is going on with you, or insist you try treatments that are proven to be harmful.

Your mental health is examined when you know that's not really the issue. You might be depressed due to fatigue and disruption to your life, but that’s not what is causing this particular bizarre symptom. You have to fight to get referrals and tests.

You spend a lot of money and energy travelling and sitting through appointments with different specialists to hear that there are no treatments. Over and over, and over again.

You are glad they tried and sometimes there are things doctors can diagnose and treat, but it doesn't get to the heart of the problem. It doesn't explain what is going on. No one can tell you how long this might go on for.

You ask, but there are no research studies you can join. 

If you are lucky or very sick, you might get into a long COVID clinic. But usually, you’re on an enormous waiting list or there’s no specialised clinic in your area.

Sometimes it's your closest friends and family that hurt you the most. The husband who doesn't believe your story, the friends who think you are making it all up, the family that keep forgetting you can't travel far or go to crowded venues, the well-intentioned people peppering you with questions when you just need to rest, the colleagues asking for 'just one more thing' when your vision is getting blurry and you can't breathe properly.

You are worried about losing your job. But, more than that, your identity seems to be deteriorating. How many things can this disease take before you have to become a different person to adapt? Forget that cycling adventure. The gym is off the table. Oh, you love hiking? Gone. You love reading or playing music or taekwondo or swimming or seeing friends? Forget it.

All your energy goes into trying to cling onto a job that you know is probably making you more sick and slowing down your recovery.

You start to strategise. How many times can you repeat the same story before everyone just gets bored or stops believing you? You start to curate your story, papering over the ugly truths to make it easier for others to handle.

You avoid reading too many news articles on long COVID. 

News articles might lead with one patient story but it’s usually just a few lines before an expert takes over the narrative. Sometimes no patients are interviewed at all, and it shows. The underlying message in these news stories is generally that doctors and researchers are working really hard, that everything is on track, everything is fine.

Listen: The Quicky speaks to an expert epidemiologist to find out what exactly long COVID is. Story continues below.

That’s not your experience so you turn to Facebook groups for support. Connecting with others online might be the only silver lining of the whole long COVID experience. People share tips and tricks openly. People with ME/CFS take you under their wing. They gently correct you when you get things wrong. They’ve been on this road a long time.

You wonder how on earth the government got away with this? People in the prime of their lives, kids even, who were previously fit and healthy getting bowled down by this horrific, entirely predictable chronic illness caused by COVID, and then totally neglected in the national conversation.

You're still in the shock stage of grief. Anger comes later. 

You're still hoping, expecting, waiting for help to come. Your faith in governments and doctors hasn't completely gone yet.

You don't want to sound like you're complaining. You don't want to have to make a fuss.

But something inside you won't stay quiet. 'This isn't fair', the voice says. 

You know there are lots of other Australians who are much worse off who need money and healthcare and support more than you do. If you’re lucky, you have savings and family who will look after you. 

But still, that voice insists, 'This isn't fair.'

The above is a compilation of 15 true Australian stories told to me over a series of in-depth interviews.

This story brings together the psychosocial experience of everyone I spoke to into one narrative.

I also wanted to share each individual story because I personally drew a lot of strength from hearing what these people had to say. 

These anonymous stories are published in full on Medium.

Feature Image: Supplied.