'I’ve had long COVID for over two years. Here are 11 things I need you to know.'

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

It might seem like COVID has suddenly decided to pop back into our lives and shake things up once again. Rising cases. New vaccinations. But for many people - COVID never left. In fact, it's changed their lives.

Take Rebecca Rose, for example. She first contracted COVID back in 2020 - and she's suffered from debilitating symptoms ever since.

A first-wave long hauler, her condition has been described by researchers as that of a 'traumatic brain injury' - akin to what doctors would see in car crashes.

She has cognitive damage. Crippling fatigue. Heart issues. Breathing problems. Her hormone levels are now "pre-menopausal".

Rebecca can't work. She can't drive. She can't live independently. 

Watch: Signs to use when talking about COVID. Post continues below.

"The 'pandemic fatigue' is understandable, but ultimately it always affects (and potentially kills) the disabled and chronically sick community," she tells Mamamia.

"I'm bedridden and housebound and generally only leave the house for medical reasons. Still, I am worried about going out because I don't want to catch COVID again, get worse or develop dangerous new complications."

"This fear has heightened since the mask mandates have gone, and the numbers are spiking to levels we haven't seen in Australia."

"Governments - and society at large - have seemingly given up on caring about COVID, aka the thing that's made me so unwell… let alone warn or mention the risk of long COVID in any meaningful way."

Because the fact is, there's still so much we don't know about long COVID. And it's terrifying.

While research is underway, there is currently no cure or treatment for the condition. 

In fact, medical professionals say they're not sure if any of these symptoms are actually reversible – there are some patients who have returned to normal but equally there are some who have deteriorated.

Rebecca said many long COVID sufferers like herself feel lonely, desperate and ignored - constantly dismissed and gaslighted by the medical community. 

"The loneliness and desperation as palpable. We began to connect - form Facebook groups, Slack channels, Instagram and YouTube accounts, and even official long COVID charities - to feel united, be heard, share research and match symptoms and continue the fight for recognition and, eventually, a cure."

"Much of the research underway now comes from patient-led advocacy and research. Patients who were too sick to work or leave bed were the ones who somehow managed to organise research surveys of up to 30k long COVID patients to shine a light on this emerging disease. It took grassroots activism to a whole new level, and I'm proud of all my fellow exhausted, incredibly ill long haulers for continuing the fight."

Here are eleven things Rebecca wants people to know about long COVID:

1. Long COVID isn't as rare as you think.

It was previously thought that only a small minority of people who contract COVID-19 end up with symptoms of long COVID. This isn't true. Now, researchers say the condition isn't as unique as we once thought.

"There are approximately 100 million long haulers around the world, which sadly grows each day exponentially," said Rebecca.

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.

"You don't want to be part of this army of lost people."

2. Do everything you can to avoid catching COVID.

Life has changed with the spread of COVID-19, and it's easy to fall into that mentality that 'if you're going to catch it, you'll catch it'.

As Rebecca points out, not getting COVID is the only proven way right now to stop getting long COVID - it's as simple as that.

"It is an airborne vascular disease. Please mask up even if you don't have to and be aware of all COVD safety measures," said Rebecca.

"Ventilate your indoor spaces, vaccinate and do all the things possible to avoid the continued spikes of what science is showing to be very virulent strains."

"Take it seriously. The long COVID community has been beating our warning drums for years, and wouldn't wish this on our worst enemies. If you understood the intense physical, mental, and emotional pain and anguish that is long COVID, you would do everything in your power to protect yourself against COVID." 

3. It's more common in women.

Researchers have found that not only is long COVID prevalent in the younger demographic, but it also disproportionately affects women.

"Long COVID does not have the same profile for people who are dying of acute COVID; it's the young and healthy who are getting struck down," said Rebecca.

"One of my COVID acquaintances is a young doctor who used to run triathlons, and another was a competitive swimmer in her 20s. They aren't old, obese, and diabetic."

Rebecca was 33 when she first caught COVID. Two and a half years later, she said her hormone levels are now "pre-menopausal". 

"I can feel the effects of this drastic downturn in all my hormones - mood, change in menstruation, sex drive, weight loss, body, and hair changes but the really concerning thing is what it's doing and will continue to do to my fertility," she said.

"I have a fertility doctor on my team and we are in the process of looking into whether we can do IVF/embryo freezing, so our dream of having a family isn't stolen by this disease. This, of course, costs significant amounts of money that a Disability Pension won't cover…"

4. Wear a mask.

There are sensible actions you can take to considerably reduce your chances of being infected with COVID - face masks being one of them. They work. Wear them.

"Please be considerate and mask up to protect the disabled and immunocompromised community! PLEASE! We don't want to get sick and die," said Rebecca.

"And if you aren't willing to offer protection for those who are high risk and/or immunocompromised (check your ableism...), are YOU ready to become high-risk and immunocompromised? Each covid infection drastically increases your risk of long COVID complications."

"Think about yourself and your loved ones because we are all closer to disability and prolonged illness than we think."

5. Don't think long COVID doesn't and won't affect you.

"Wondering why there are staff shortages at airports and a lack of veggies at your local Woolies? Acute and long COVID is affecting our workforces, our medical systems, social benefits systems, and ultimately what is happening with your hard-earned money and tax dollar. This requires a combined government and community approach."

To put it into perspective, in the UK an estimated 80,000 people have left employment due to long COVID. 

"We argue that governments need to tackle the twin challenges to public health and labour supply and provide employment protection and financial support for individuals and firms affected by long COVID - It's happening and will continue to happen here in Australia too!"

6. If you get COVID, rest for longer than you think.

For Rebecca, it took eight months from her initial infection for all the long COVID conditions to manifest and emerge. Eight months.

"This is why masking and avoiding getting further infections is my number one priority. Along with catching any and everything, my body's resilience and ability to fight have dwindled - I've been fighting a bacterial infection for three months to no avail. Secondary infections are like the rotten cherries on top of a curdled ice cream sundae that is long COVID." 

"If you get COVID, please REST and rest for longer than you think! Most long COVID appears many weeks or even months after the initial infection and when people are feeling better."

"Getting back into life or exercising too quickly when your body is recovering, however mild your infection was, isn't a good idea and may trigger long COVID. If you're feeling fatigued, don't push yourself. It's not worth it."

7. Educate yourself on the signs of long COVID. 

Do you know what long COVID looks like? It's not just a little bit of fatigue 'brain fog'. Today, researchers are more aware that COVID can affect every system in the body.

While long COVID has hallmark symptoms, it's important to know that no two people with the condition are presenting the same - making the research and potential treatment much harder to pinpoint.

"Educate yourself on the signs of long COVID, and in the unfortunate case you find yourself experiencing symptoms, find a literate doctor who is validating of the condition."

8. Illness is not black and white.

As long COVID symptoms are so wide-ranging and individualised, it often makes them difficult to understand and, as a result, can predispose people to scepticism.

Rebecca tells Mamamia there's still very much an underlying lack of recognition and stigma surrounding long COVID, with many health professionals still telling patients "it’s all in your head”.

She said, "Challenge your perception of what you think of the disabled and chronically ill community. Understand what ableism is and examine if you consciously and subconsciously add to it."

"Do you think all sick and disabled people need to be in a wheelchair, old, and with an oxygen tank? Wrong. Disability and chronic illness are nuanced, not black and white, and can affect anyone of any age and background."

"Don't add to the stigma, ableism, and perception that you must act, look and be a certain way to be sick. It's undermining and ultimately why so many people don't talk about their illness and aren't believed."

"Long COVID, for example, comes with a spectrum of severity, and for most people, the intensity of their symptoms is episodic too. To look at me, you would probably think I'm not sick. I've been told I look, "great and really well!" which is hard to respond to because I'm very unwell." 

"I joke with my husband - 'I'm sick, not ugly?!' Often if you see a chronically ill person out in the world, it's because they're having a 'better day', might be on medications to help, have strict timing boundaries, and will undoubtedly pay for it when they get home."

9. There's no cure - and little help.

One of the hardest parts for sufferers? There's currently no cure. While progress has been made on the research of long COVID, there is currently little available to help patients return to their pre-COVID lives.

"Don't assume help is there if you get chronically sick - financial or medical," said Rebecca. "There is no medical cure for long COVID and getting on a Disability Pension is a very long, arduous process that often ends in rejection."

Long COVID is incredibly disabling - leaving patients like Rebecca unable to work. And for individuals unable to access disability support, the financial and emotional stress is huge.

"Long COVID is an ambiguous condition and often doesn't fit into the strict rules and categories Centrelink requires for financial assistance," said Rebecca.

Meaning? Many long COVID sufferers are not only struggling to live with this interminable illness, but they're also struggling to make ends meet - with no way to pay staggering medical costs, bills and rent. 

10. Don't give unsolicited advice to chronically ill people.

Like many long COVID sufferers, Rebecca said her illness is made worse by people not understanding the severity of her condition and often out of ignorance mistaking it for a mental health illness. 

"Don't give unsolicited advice to chronically ill people, especially if you don't know anything about their condition. Are you a research scientist studying long COVID? No? Then zip it."

"People with long COVID understand what's going on with their bodies, so please don't suggest yoga, tea, or what your aunt did to fix her thyroid. I can promise you that, out of sheer desperation, we have and will continue to try everything to heal."

11. Be a good friend.

"When your life becomes hard and 'complicated', sometimes it's just too much for people to understand your plight, especially when they see you and want you to be a certain way," Rebecca tells Mamamia.

"Add the intense need to constantly be COVID-safe, and the world becomes very small and constricted."

While there is inevitably a disconnect and an inability to truly understand what long COVID patients are going through, Rebecca said offering support is so important.

"If someone in your life is disabled or chronically ill, try to be a good friend and ally by researching their condition," said Rebecca. 

"It will mean the world and take the mental load off them, so they don't have to use what precious energy they have to explain their condition when they'd much prefer to be talking about something joyful, distracting, and fun with you."

Have you experienced long COVID before? What was your experience? Share with us in the comment section below.

Feature image: Getty

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