Gaslit and forgotten: The silent struggle of Long Covid sufferers whom the world has ignored

“I STOPPED working in December 2023 because of memory loss and other symptoms of Long Covid. I made mistakes at work and couldn’t keep up. There’s nothing they can do for me, and I’ve had to accept living with it.”

These are the words of a South African Long-Covid sufferer, Juanita Kock. She is one of over 65 million people across the globe who have been hit by strange and life-changing symptoms long after they have suffered from Covid. Symptoms ... which the medical profession can’t seem to get a grip on.

Some of the symptoms include severe brain fog, loss of cognition and extreme fatigue, among others.

“Doctors don’t always link a patient’s long-term symptoms to their initial Covid-19 infection. This lack of awareness means many South Africans suffer in silence,” says Professor Abdool Karim, director of the Centre for the AIDS Programme of Research in South Africa (CAPRISA).

He says some patients describe it “as feeling like a cloud is over them — they can’t think straight, they’re exhausted, and there’s no clear treatment. It’s debilitating”.

This complex, multisystem disorder has become a silent pandemic of its own, affecting millions worldwide, including South Africans.

Yet, despite its significant impact, Long Covid remains under-recognised, misunderstood and underdiagnosed.

Sufferers speak of being ridiculed by friends about their symptoms, told they are faking it to get out of working, that it is purely psychological, that they are lazy, that they are mentally ill and many are left to battle it out in silence. However, the reality is that the lives of sufferers’ shrink to a fraction of their former lives.

“My capacity is less than 50% of what it was,” says Mlindeni Gabela, the Long Covid Ambassador for MELCuSA (ME and Long COVID Unite South Africa).

Gabela’s life ground to a halt and the once strong and hard-working mixer in an industrial bakery, spends a big portion of his day unable to function.

Gabela says family members and workmates say: “but you look healthy”, and accuse him of being lazy.

“Most people don’t understand how it affects your life. I had to educate myself through research to understand what was happening to me.”

Many sufferers also know all too well the vacant look from medical professionals, many themselves in the dark about the many and varied symptoms that are popping up post the initial Covid-19 attacks in the early 2020s.

“It went as far as gaslighting by doctors,” says Gabela. “This is what is very depressing, it’s so painful to be dismissed as mentally ill (when you physically just can’t function).”

The human cost of Long Covid goes beyond financial strain. It alters lives, relationships, and mental health.

Gabela shared how the condition has isolated him.

“Even spending four hours outside my home is a risk. Preparing breakfast takes more energy than it used to. It’s a complete transformation of how you live.”

One of the biggest challenges in addressing Long Covid in South Africa is a lack of awareness.

Gabela notes that Long Covid is rarely discussed in mainstream media or public health campaigns. “You’ll never hear about Long Covid on radio stations or in the news. That needs to change.”

Globally, it’s estimated that 10-15% of Covid-19 patients develop Long Covid, regardless of the severity of their initial infection.

This means even those with mild symptoms of COVID-19 are not exempt from the risk.

With South Africa’s population of 60 million and its high rates of Covid-19 infections during the pandemic, this translates to potentially millions of South Africans grappling with Long Covid.

It is clear that Covid-19 pandemic has left a profound mark globally, not just in terms of acute infections, but also through this lingering, mysterious condition.

But, what is Long Covid?

Long Covid, also known as post-acute sequelae of SARS-CoV-2 (PASC), refers to a range of symptoms that persist long after the acute phase of Covid-19 has resolved.

These symptoms often linger for weeks, months or even years. Long Covid is not one-size-fits-all; it’s a syndrome —meaning it manifests differently in individuals.

Symptoms vary but commonly include:

1. Fatigue and malaise: A sense of overwhelming tiredness or exhaustion, even after minimal effort.

2. Brain Fog: Difficulty concentrating, memory lapses, and an inability to handle complex mental tasks.

3. Physical and Psychiatric Illnesses: This includes heart inflammation (myocarditis), depression, anxiety, and even loss of grey matter in the brain, as noted in recent studies.

According to research published in Nature Medicine, Covid-19 can reduce brain size in some patients, leading to neurological symptoms such brain fog.

“The virus doesn’t just affect the lungs - it has a systemic impact, causing inflammation in the brain, heart, and other organs. This is why so many Long Covid patients report being unable to return to their normal lives,” says Prof Karim.

This list grows, and even symptoms such as vertigo, dizziness and disassociation are becoming more common.

Why Long Covid remains under diagnosed

Despite its prevalence, Long Covid is often under diagnosed, particularly in South Africa. The reasons are multi-faceted:

Delayed onset: Symptoms can appear weeks or months after recovery from Covid-19, making it difficult for patients and doctors to connect the dots.

Misdiagnosis: Many patients are told their symptoms are unrelated to Covid-19, and conditions like myocarditis or depression are treated as separate issues.

Lack of awareness: Both patients and healthcare providers may not be fully informed about Long Covid. However more and more doctors are becoming known as Long Covid doctors and have seen a rise in patients travelling to see seek their counsel.

Vaccinated vs unvaccinated

One of the few proven ways to reduce the risk of Long Covid is vaccination. Studies show that individuals who have received at least two doses of a Covid-19 vaccine have a 70-80% lower risk of developing Long Covid.

However, some vaccinated people do report suffering from Long Covid. And others, such as South African runner Bruce Fordyce, are talking publicly about Vaccine Damage which is being discussed as a completely different affliction to Long Covid needing different treatment..

The economic fallout of Long Covid

A workforce in crisis

South Africa’s unemployment rate, one of the highest globally at approximately 32.9% in 2023, could be further exacerbated by Long Covid. Many who were part of the active workforce before contracting Covid-19 now find themselves unable to return to their previous roles because of persistent symptoms.

Gabela said the condition forced him to stop working.

“After I was hospitalised by Covid-19 in 2020, I developed Long Covid and was diagnosed with ME two years later. I lost my job as a mixer in an industrial bakery as I couldn’t physically lift and carry bags of flour anymore. My capacity is less than 50% of what it was.

“I struggled with fatigue, brain fog and shortness of breath. I couldn’t stand for long periods or concentrate at work. Eventually, I had to resign because I couldn’t function.”

Such stories are alarmingly common. For many South Africans, this means not only lost wages but also depleted savings and an increased dependency on government welfare programmes.

Employees’ inability to work full-time or perform at their previous capacity leads to lost productivity.

A 2022 global report by the World Bank estimated that Long Covid could reduce annual economic output by 1%, which could translate to billions of rands in economic loss for South Africa.

For people like Kock, the consequences have been severe. She reveals how Long Covid has changed her daily life. “I still get tired doing basic things. I use a CPAP machine for my lungs and still suffer from a metallic taste in my mouth. My memory has been so badly affected that I’m now on chronic medication.”

Treatment and management

According to Professor Karim currently there is no definitive cure for Long Covid. However, some treatments and preventative measures show promise:

Paxlovid: A post-exposure antiviral medication that, when taken within 72 hours of developing Covid-19 symptoms, can reduce the risk of Long Covid by up to 90%.

“We keep Paxlovid for elderly patients in our pharmacy, but it’s not widely available. This speaks to broader inequalities in healthcare access,” says Professor Karim.

Paxlovid is used to treat Covid symptoms and has proven to be beneficial in treating the condition.

Symptom-based care: Managing Long Covid often involves treating individual symptoms — such as physical therapy for fatigue or counselling for mental health challenges.

Awareness and advocacy: Patients must advocate for themselves and seek out doctors familiar with Long Covid.

Alternative health practises: Many sufferers turn to alternative health treatments when mainstream medicine cannot help. They look at nutritional-based support and things such as meditation, breathwork and accupuncture for instance.

Most spend thousands of rands (if they have it) to try and find a solution, not to mention all the medical tests that get taken before to ensure that this is not life-threatening. For many these tests come back normal and that is the conundrum medical professionals sit with.

The impact on mental health

Another alarming aspect of Long Covid is its effect on mental health. Depression, anxiety and even cognitive decline have been observed in patients. Some studies suggest that Covid-19 causes a reduction in grey matter in the brain, impairing functionality.

For young South Africans, particularly those in the workforce or studying, brain fog and mental health challenges can severely impact productivity and quality of life.

The psychological burden of Long Covid is immense. Chronic fatigue, cognitive challenges, and the uncertainty of recovery contribute to anxiety and depression.

Many patients report feeling dismissed by medical professionals and by society at large.

Healthcare costs

Treating Long Covid is another financial burden. While there is no cure, symptom management often requires a combination of medications, physical therapy, mental health support and, in severe cases, oxygen and other expensive medical equipment.

Gabela relies on oxygen tanks and IV drips to manage his symptoms, “Every two or three days, I use an oxygen tank for about eight hours. It doesn’t heal the symptoms — it just makes them bearable.”

Kock adds: “I’m thankful to be alive because so many didn’t make it. But living with Long Covid is hard—it’s a daily struggle.”

Not all is lost. As more people come forward with these varied symptoms, some in the medical profession are taking notice and realising that this a syndrome that needs attention.