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Rebecca has had long COVID for two and a half years. She describes it as a "living death".

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


It's February 2020, and Rebecca Rose is out for dinner in Los Angeles, where she's been living for five years. She's with her husband and a group of close friends.

A few days later, Rebecca has a "throat thing." There have been some preliminary news reports on a virus from China - but testing in LA is restricted to those experiencing all four symptoms of sneezing, coughing, sore throat, and a substantially high fever.

Months later, Rebecca still feels ill.

Watch: Here are some signs to use when talking about COVID. Post continues below.


Video via Mamamia

Her symptoms begin to change in intensity. She experiences fatigue, difficulty sleeping, intense body aches and pains. Then the cough starts.

By the end of April, Rebecca is struggling to breathe, describing it to Mamamia as "an elephant sitting on my chest 24/7." 

She is then diagnosed with pneumonia.

"An urgent care doctor said my lungs looked like "ground opaque glass," akin to what they were seeing with COVID patients, and clinically diagnosed me with having previously caught it," she told Mamamia

"That was the first recognition that this 'throat thing' from February was a COVID infection."

"The doctors back then didn't know anything about the disease process of COVID, potential treatments, or any solid advice, so I was given antibiotics and told I should be fine soon enough."

"I attributed all my other symptoms to my body fighting it. I was wrong - the secondary COVID pneumonia was terrible, and long COVID was continuing to take hold."

The neurological symptoms appeared in July 2020 in the form of paralysis in Rebecca's face, neuropathy/numbness, tingles in her arms and legs, slurring of speech, and a "dementia-like" loss of memory. 

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These symptoms saw Rebecca hospitalised, with doctors noticing similar signs to a brain tumour or Multiple Sclerosis

"I was discharged feeling worse, neuro symptoms still present, with a bottle of magnesium and no other instructions or follow-ups."

Fast forward to now, July 2022 - 29 months later - and Rebecca's ongoing symptoms of long COVID continue to have a severe impact on her health. 

They have left her unable to perform basic daily activities and, some days, even remember what she had for lunch. 

She's now one of a growing number of people around the world suffering from what researchers refer to as symptoms akin to a 'traumatic brain injury'.

Life, as she once knew it, has completely unravelled.

"Me and my husband's lives have been irrefutably changed for the worse," the 35-year-old told Mamamia.

"Along with getting COVID in February 2020, the pandemic and rollout of lockdowns saw us lose our jobs in March that year. In the US, that generally means you lose your health insurance too, which isn't ideal when you're looking down the barrel of a never-ending health crisis."

"We didn't live a large, over-the-top life, but when you both get hit, and then medical bills start rolling in, the situation quickly becomes dire."

"Ultimately, the writing began to appear on the wall, and we knew we had to get me back to Australia."

"My long COVID was continuing to progress, and we didn't have access to the level of care and support I needed. Also, the strain my now full-time carer of a husband had on his shoulders was too immense for one person; we needed better doctors and my family's support."

After 18 months of trying to return through border restrictions, the couple managed to get home to Sydney in June 2021. Being pushed in a wheelchair at both LAX and Sydney Airport, was something Rebecca describes as "sobering".

"Along with our family's generosity, we used our savings to get to Australia and then to keep my American husband here; visas cost a lot! In the end, we lost everything - our car, our apartment, and we're now in a colossal amount of debt."

"My parents kindly took us in because my Disability Support Pension barely covers my medicine and doctor's appointments. Our normal, independent life in LA seems like a completely different world now."

What it's like living with long COVID.

Pre-COVID, Rebecca was working as a full-time journalist. She is now completely bedridden, only leaving the house for medical appointments. 

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Simply put, she said it's a "living death".

"The Chronic Fatigue Syndrome/Myalgic encephalomyelitis (ME/CFS) community coined #missingmillions, and that's precisely what happens and what you become: a ghost, a shadow of your former self."

As Rebecca told Mamamia, her career, social habits and everyday life have been flipped upside down.

"Someone who suddenly isn't at work, the gym, school pickup, the Christmas party, the Sunday social soccer match, or the yearly family get-together."

"I've lost the ability to problem solve, organise my thoughts, sleep properly, communicate concisely, and even just listen and absorb information. It's hellishly frustrating and hurts," said Rebecca.

"I liken it to having water thrown on your computer's motherboard, but that motherboard is your brain... I have a hard time processing and retaining new information. I also can't cognitively multitask - for example, if someone is talking to me while the TV is on, it's like a crowd of people are yelling at me."

"My brain hurts and then shuts down in protest. Losing your cognitive abilities is something I never thought I'd deal with."

She said feels like she's living in limbo - a nightmare you can't wake up from.

"You vanish, often without a trace, made worse by people not understanding the severity of your condition and often out of ignorance mistaking it for a mental health illness. Milestones pass. Time moves painfully slow but paradoxically fast because suddenly, you're a year older, but still as sick as you were the year before."

One of the toughest changes to process is how vastly this debilitating disease has impacted her relationships. Particularly with her husband - who is now her full-time carer.

"I have a brain injury thanks to long COVID, and how we communicate, joke, and even watch or not watch TV has changed. I've been in bed or on the couch for 29 months - there have been no date nights, movies, Sunday walks, holidays, plans, friend catch-ups, or uncle and aunty babysitting adventures. No levity, just the unending struggle that is chronic illness."

"We hoped to have had a baby by now but instead, in many ways, I am the helpless child. I often need help bathing, walking, and basically anything that involves physically existing. My husband does everything for me. He cooks and cleans, calls and organises my doctor's appointments, drives me everywhere (I'm not allowed to, nor do I want to because of my brain injury), and fills out admin and Centrelink forms."

"Most people in my life have absolutely zero idea how unwell I really am."

Thanks to her lingering illness, Rebecca said she has also lost some of her closest friends.

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"When your life becomes hard and "complicated," sometimes it's just too much for people to understand... especially when they see you and want you to be a certain way. Vice versa, too, it's hard to connect with people whose lives seem now so foreign and in many ways 'easier' than yours."

"There is also the underlying fear of not wanting to be a burden; there are no answers to our problems right now, so why even talk about it? Often when I have spoken about my experiences with long COVID, I am invariably met with pained, grief-filled silences, an awkward platitude, or, unfortunately, "toxic positivity." 

What health professionals are saying about long COVID.

Recent Australian research has now found the possible causes behind these symptoms experienced by sufferers of long COVID - pinpointing cognitive impairment as a very real, and very serious condition that impacts memory, attention and functioning.

The study, which was run by Professor Bruce Brew, Head of Peter Duncan Neurosciences Unit at St Vincent’s Private Hospital, looked at 128 patients over 12 months. 

It was found that the cognitive impact of long COVID can last for longer than a year. For some patients, the damage may be irreversible.

For sufferers like Rebecca, the research is a breakthrough - shining the light on a confusing and seemingly endless illness. 

However, the research on treatment options is still very much ongoing, which is a harsh reality for existing sufferers.

"Finally, after two years of neurological torture, I was diagnosed with a COVID-acquired brain injury similar to that seen in other cognitively injured long COVID patients," said Rebecca.

"Research suggests these brain injuries are similar to traumatic brain Injuries, which many would experience after a car accident or similar trauma. It was validating to know I wasn't losing my mind, but equally sobering being told your frontal lobe/cortex and brain stem are inflamed and injured."

Currently, Australia does not collect data on long COVID - so knowing the exact number of people in Australia suffering from the condition is difficult. Along with this, there's currently no universal definition of what long COVID is.

Because while many patients improve over time, others do not.

There was, however, a recent NSW study by medically trained epidemiologist Associate Professor Bette Liu of Population Health at UNSW

Professor Liu found five per cent of people who got Covid-19 after New South Wales' first wave in 2020 were still experiencing symptoms three months later.

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It's now estimated that between 10 and 20 per cent of Australians infected with Covid-19 will go on to suffer from long COVID, with one of the most common symptoms being brain fog and cognitive impairment. 

This estimate equates to hundreds upon thousands of Australians who will be left with a debilitating condition - a serious disability that will stop them from returning to normal daily responsibilities such as work or school.

Despite the significant impact this is having on the community and on individuals, like Rebecca, many sufferers are not being heard - with controversy still surrounding diagnosis and treatment options.

The long COVID community is still fighting for recognition, research, funding, and treatment.

Rebecca said, "Medical gaslighting isn't a new phenomenon; the CFS/ME community has been dealing with it for decades, as have women. (Just ask any woman with endometriosis!). long COVID, unfortunately, [is] just another arena for this to play out in."

"The utter frustration and trauma involved when you're continually told your symptoms, pain, and very-real medical condition don't exist are enough to make anyone think they're going crazy."

"Self-advocating, when the world doesn't want to listen, is beyond tiring, especially when your disease takes away the literal energy you need to do so."

What are the treatment options for long COVID?

While research for the development and trial of treatments is underway, there is currently little available to help patients return to their pre-COVID state.

Unfortunately, it's now a waiting game. And a frustrating one at that. Science and a full understanding of the condition is just not there yet - and it could take years. 

The most recent research, headed by Professor Brew, is looking at trialling existing medications that target the same neural pathway - possible treatments that are already used for other conditions, such as those affected by cancer or epilepsy.

Rebecca told Mamamia, "Some brilliant researchers worldwide (despite inadequate funding and government support) are trying their hardest to crack the code and get to the root of long COVID. Presently though, there is no cure for long COVID, and not even substantial treatments to bring a drastic improvement to the quality of our lives."

"It's all about symptom management, but even that has its limits. I liken it to trying to complete a jigsaw puzzle without half the pieces…" 

Rebecca is currently on migraine medicine in an attempt to manage her neuroinflammation and pain. She said at this point, she'll try anything.

"I'm on different cocktails of drugs, powders, and supplements to help manage a particularly hay-wired and inflamed body. This is along with meditation, breathwork, Qi-gong (all of which target the ever-important vagus nerve), acupuncture, eating exceptionally well, healing my gut, resting, pacing, and mental health work. To say I'm throwing the kitchen sink at this would be an understatement, yet I'm still bedbound…"

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What the future holds for sufferers.

"I have great hope I will find a new version of myself who isn't always this unwell, but ultimately, I will have to wait for researchers to find the escape hatch," said Rebecca. 

"Even with research going at the pace it is, trials and treatments could be, at best, years away. This is why funding for research is so important. long COVID isn't going anywhere."

Another challenge many sufferers are facing is the crippling lack of financial support. 

For individuals like Rebecca, who are now fully financially dependent on disability support, the financial and emotional stress is great. "No amount of budgeting or life savings can prepare you for this," she told Mamamia.

For others who struggle to fit the detailed criteria for Disability Support - deemed 'not unwell enough' for disability support - the challenge is even steeper.

The hardest part? Not knowing what the future holds.

"I can't work, I can't drive, I can't live independently, and any pursuit of my dreams before getting sick isn't possible right now."

"They say health is wealth, which is the most accurate statement. Poor chronic health changes you at your core. How you see yourself, your relationship with your body, spirituality, others, and the world... It's both painful and beautiful because you realise what really matters and how much the little things - for me, like going for a walk or playing with my niece and nephews - make the world go around. Having long COVID is akin to getting swept up in a tornado - it's disorientating, painful, destroys everything you once knew and relied on, and can potentially kill you."

"I still have hope and every day fight the notion that I am "gone," and all that's left is a shell of who I used to be. I know that this illness inhabiting my body does not define me, but rather is something unfortunate happening to me. Guilt, shame, and wondering if you did something wrong to end up like this is a useless rabbit hole to fall down."

Are you suffering with long COVID? Please share your experience with us in the comment section below.

Feature image: Getty; Canva

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