Long COVID Awareness Day

It’s been over 5 years since the COVID-19 pandemic began. All over the world, people were so desperate for life to go back to “normal” that they decided the pandemic was over and the COVID-19 virus was the same as the flu, despite all evidence pointing to the contrary. Some prefer to pretend like the ongoing tragedy never happened, locking their trauma and grief deep inside them, and casting aside their fear.

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But not everyone has the luxury of pretence. Some people cannot so easily act as though COVID-19 is over, because it’s still wrecking havoc inside their bodies.

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Long COVID is a multi-systemic disease that follows a COVID-19 infection. It’s a debilitating post-viral illness that affects everyone differently and has over 200 symptoms. There is no cure or treatment. Cisgender women and other people assigned female at birth are far more likely to get Long COVID and like many other chronic illnesses that disproportionately affect this population, research into Long COVID has been consistently underfunded.

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When I got COVID-19 three years ago, I became very unwell very quickly. Even struggling to breathe and in a feverish state, I had the sense that it was going to change everything for me.

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Now I was hardly the picture of good health beforehand, I’d been living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since I was a teenager and had only recently been diagnosed with Fibromyalgia and Raynaud's syndrome.

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I was one of those people with pre-existing conditions. I was part of the group that public health officials stated would “fall by the wayside” and remarked that it was “encouraging news” that COVID-19 only predominantly kills us.

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Most people in Australia didn’t experience the devastation at the beginning of the pandemic on the same scale as the rest of the world, due to our distance from other countries, the restrictions on international arrivals, and the government’s use of lockdowns and contact tracing. But being chronically ill meant that I knew I needed to take the pandemic seriously, no matter how far away it initially felt. I had done my research; reading international medical studies and having conversations with generous doctors and researchers online. I knew early on that COVID-19 and Long COVID were making pre-existing conditions like ME/CFS worse.

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I tried my hardest to avoid the virus by wearing a N95 respirator in all public indoor spaces and crowded outdoor spaces, received all available vaccinations and minimised in-person contact with people. Avoiding the virus became increasingly hard as the government abandoned their response to the COVID-19 pandemic and removed most public health measures.

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I’ve never wished so hard to be wrong, but I was right. Long COVID changed everything for me. My pre-existing conditions have become much worse and I’ve gained a collection of new symptoms like chest pain, heart palpitations, allergies, tinnitus, and breathlessness.

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Most days, I wake up feeling like I’ve spent the night drinking the entire contents of a liquor store and then running a marathon without stretching or training for it. There’s a woolly bleary feeling in my brain that won’t disappear despite how many hours I sleep or how much caffeine I drink. Vacuuming, cooking dinner or carrying heavy groceries makes me feel completely drained and in need of a lie down. I have more days with headaches than without, often forget words mid-sentence, and my short-term memory has all but disappeared.

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Sometimes it feels like a car has run me over, leaving bruises that throb deep in my muscles and joints. The pain leaves me hunched over the toilet, throwing up. On bad days, I barely have the energy to leave my bed. I’ll close my eyes and pretend to disappear from my exhausted aching body, or peer at my phone in the dark, watching the minutes go by slowly and hoping for relief.

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My experience is far too common. For many people who have been impacted by Long COVID, their lives have been turned upside down and they have been left without employment, medical assistance, housing, financial support, and so much more. They are abused in the streets for wearing respirators, unable to safely access healthcare without risking further COVID-19 infections and forced to spend money they don’t have in an attempt to ease their debilitating symptoms.

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This Long COVID Awareness Day, I’m thinking of everyone who has been impacted by and is living with Long COVID. This condition is unimaginably lonely, but I promise that you’re not alone. The disability community has been a lifeline for me through this, I would be lost without them. I hope you can find people who understand and support you on Spoony.

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The COVID-19 pandemic never ended. It’s still ongoing and affects everyone, not just folks with Long COVID. Every subsequent COVID-19 infection increases your risk of developing chronic health issues like Long COVID, diabetes, heart attacks, strokes, kidney disease, and mental health conditions.

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Want to avoid Long COVID? Smart choice. Wear a respirator, clean the air and re-educate yourself about COVID-19. There’s a lot of misinformation about the virus, so check out information based in scientific research from sources like The Sick Times, The Burnet Institute and Dr Lucky Tran and easy to understand video content from science communicators like Lola Germs, Hoolie_r, Jaydo and Themme Fatale.

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Sources

The Burnet Institute, a medical research institute

The Sick Times, an independent news site that reports on the Long COVID crisis and COVID-19

Carolyn Barber, 2024, COVID can cause new health problems to appear years after infection, according to a study of more than 130,000 patients

Devna Bose and Carla K. Johnson, 2025, Vulnerable Americans live in the shadow of COVID-19 as most move on

Clean Air Crew, 2023, COVID is Airborne

Dr Brian Doctrow, 2023, How SARS-CoV-2 contributes to heart attacks and strokes

Dr Anthony Fauci, 2023, BBC interview

Fortesa Latifi, 2022, Young People with Long COVID Share their Experiences

Michael Merschel, 2024, Beyond breathing: How COVID-19 affects your heart, brain and other organs

Tanyel Mustafa, 2025, 5 Years Later, Women Are Still Living With Long Covid

Lynn Parramore, 2024, “Debilitating a Generation”: Expert Warns That Long COVID May Eventually Affect Most Americans

Shital Patil, Swati Patil, Gajanan Gondhali and Sham Toshniwal, 2023, Immune Dysregulation during and after COVID-19: “Tomorrow Never Dies” Situation

Erica Sloane, 2024, What Repeat COVID Infections Do to Your Body, According to Science

Fid Thompson, 2024, N95 Masks Nearly Perfect at Blocking COVID, UMD Study Shows

Dr Lucky Tran, a science communicator, biomedical scientist and Director of Science Communication at Columbia University

Dr. Rochelle Walensky, 2022, ABC Interview