The stigma of Long Covid: Why people don't believe it's real

When Covid-19 swept the world back in 2020, it quickly became a condition mired in public distrust and misinformation.

Protesters took to the streets to deny its existence or call it a ‘plandemic’, while unverified speculation suggesting coronavirus was caused by 5G internet or part of a planned strategy by governments to promote compliance, made their way to our social media feeds.

It’s easy to dismiss conspiracy theories or those who proliferate them. The fact that these belief systems are now mainstream, however, reveals a deeper sense of suspicion in our society.

Grace Withers, 25, was diagnosed with chronic fatigue related to Long Covid in December 2020, after experiencing shortness of breath, headaches, and heart palpitations for almost a year.

Trainee teacher Grace, from London, told Metro.co.uk: ‘When I first became exhausted I put it down to adjusting to working full-time as I only started my job in September 2020.

‘As I never tested positive for Covid, I struggled to believe I actually had Long Covid, but my symptoms all pointed to that and an antibody test confirmed it.

‘For me, feeling tired just felt a bit silly, but actually it was complete fatigue, and it got so bad that my doctor advised me to move home and live with my parents for a few months.’

Thankfully she was diagnosed and is managing her symptoms effectively, but Grace has dealt with disbelief from others, saying: ‘I’m forever being told I just need a better routine or an extra hour in bed.’

Grace’s story isn’t a one-off.

Around half of women sufferers who participated in University of South Carolina research found that some people, especially those who had never been infected with coronavirus, felt quite ‘doubtful about persistent symptoms.’

Additionally, 21.5% of Long Covid patients who answered a worldwide study felt that medical staff were not attentive to them, describing their care as confused, reluctant, and dismissive.

‘Some are incredulous that it’s happening. They are like, “oh, just fight through it”,’ said one respondent, while another wrote: ‘Some medical professionals try to trivialise it or make their patients think that it perhaps might be in their head.’

When writer Ed Yong began documenting the experiences of Long Covid sufferers, he received hundreds of messages from people who feel their symptoms were dismissed.

In an article for The Atlantic he said: ‘The physical toll of Long Covid almost always comes with an equally debilitating comorbidity of disbelief.

‘Employers have told long-haulers that they couldn’t possibly be sick for that long. Friends and family members accused them of being lazy. Doctors refused to believe they had Covid-19.’

Where does Long Covid stigma come from?

This likely stems, at least in part, from the uncertainty around the post-viral illness as the pandemic began to unfold.

Academics from UCL and the University of Glasgow claim that Long Covid ‘challenges common assumptions that were in place in the early pandemic and which often persisted despite patient testimony.’

Covid doesn’t behave like other viruses, but was initially compared by some to the flu or common cold. When patients began reporting lasting issues, medical professionals didn’t have the knowledge they have now – and many will have automatically attributed symptoms to other conditions.

Then there’s the way Long Covid presents itself, which can only be described as idiosyncratic.

Long Covid patients report varying symptoms, from extreme fatigue and diarrhoea to chest pains and rashes. Loss of smell and taste and issues like insomnia can also last long after tests show a negative.

This cocktail of neurological, musculoskeletal, respiratory, psychological, and gastrointestinal pathologies makes it hard to pin down exactly what it is.

Dr Claire Vowell, Counselling Psychologist at Koa Health, tells Metro.co.uk: ‘It’s apparent that some symptoms of Long Covid are also present in other conditions, which can lead to confusion.

‘We also know there has been misinformation about the condition circulating on social media. These issues are further confounded by the fact that there are not yet definitive diagnostic criteria available.’

Unfortunately, however, more knowledge of the syndrome may not mean wider support for sufferers.

So-called contested illnesses, of which there is scant biological understanding among the medical community – like chronic fatigue syndrome (CFS), fibromyalgia, and multiple chemical sensitivities (MCS) – present similarly to Long Covid.

When CFS was first identified as a distinct entity in the 1980s it was described as ‘yuppie flu’ and ‘shirker syndrome’, and even now a large proportion of doctors simply don’t believe it exists.

Sufferers of various chronic illnesses have been labelled lazy, spoiled, hypochondriacs, or told their symptoms are ‘all in their heads’, despite evidence across the board that this isn’t true.

Tina Wright, 51, CEO and Founder of Evolve Psychotherapy, has a number of chronic conditions, including Crohn’s Disease and fibromyalgia.

Speaking to Metro.co.uk about the dismissive attitudes she’s encountered, Norfolk-based Tina says: ‘During school years I was often in tears and holding my stomach. I would try to cry silently because I was told by one teacher to stop making a fuss because they believed I was trying to get out of PE classes.

‘When I was taken to the GP, he just said, “all children get pains in the tummy”. In my teens I was checked out again. This time at hospital because they thought it might be gynaecological. “Growing pains” is what I was told in the end.’

Invasive tests followed, but after one doctor suggested her debilitating symptoms (extreme abdominal pain and using the toilet eight times a day) were ‘psychosomatic’, Tina avoided medical professionals for years.

‘I felt as though he was saying it was all in my head,’ she continued. ‘I felt confused and started to worry that maybe I imaged the pain – then I’d get the pain and know I hadn’t.’

Like with coronavirus itself, there’s no way to predict who may end up with Long Covid, but women, older people, and those with existing conditions like asthma are at greater risk.

There’s a long history of marginalised groups being disbelieved in healthcare settings: Racial stereotyping stops Black women getting crucial early cancer diagnoses, HIV and AIDS sufferers experience homophobic discrimination due to a perceived link between sexuality and the disease, and it takes an average of 7.5 years living in constant pain to receive an endometriosis diagnosis.

Existing societal biases intertwine with our own personal narratives, creating a vicious cycle where patients feel doubted and therefore withdraw socially or are deterred from getting help in future.

Eleanor Byrne, writing for the Brain Behaviour and Immunity Journal, said: ‘Such patients seem to express a distressing tug-of-war type experience, flitting between conviction that their condition is legitimate, and “giving in” to the doubtful voices resulting in an internalised sense that they are malingering or that it is “all in their head”.’

It could be argued that elements of the UK’s coronavirus narrative – and the individualistic elements of our society that this revealed – also factor into how Long Covid is thought of.

Great Britain scores 89 out of 100 on the Hofstede Individualism Model, one of the highest in the world, and this attitude has been correlated to higher Covid cases and deaths than in countries with a more community-based outlook.

As mentioned above, collectivist action ‘for the greater good’ like mass vaccination and lockdowns were vehemently opposed by many, and a culture of blame around the virus persisted.

From Matt Hancock telling young people ‘don’t kill granny’, to Pimlico Plumbers boss Charlie Mullins accusing furloughed staff of being work-shy, it was implied that we were personally responsible for both the spread of coronavirus and for the economic impact staying at home caused.

We clapped for the NHS workers who risked their lives to care for us, but staff were given a meagre 3% pay rise for their efforts. In fact, health service budgets have been decimated in recent decades and destitution is on the rise amid huge cost of living increases.

How to deal with symptoms not being believed

Tips courtesy of Tina Wright, Stress Illness Recovery Expert

According to Tina, this response of prioritising personal safety while dismissing the needs of the vulnerable is all learned behaviour.

She says: ‘Humans dislike uncertainty. In fact, Brosschot et al. (2016, 2018) goes far to say that we are born with an intolerance of uncertainty and, if we’re lucky, we learn how to feel safe through the nurturing of our primary caregivers in our childhood.

‘They claim that we learn about threat and how to avoid it and this is not innate. So it’s no wonder Long-Covid causes suspicion!

‘From an evolutionary perspective, any disease or illness is damaging to the tribe. So, any illness that is uncertain is seen as potentially physically threatening.

‘But with many invisible illnesses that fluctuate, such as Long covid, IBS fibromyalgia, and chronic pain, the tribe feels psychologically unsafe, too. Thus, it is going to feel safer to exile the sufferers from the tribe.

‘In modern day terms, that means to push sufferers away, not believe them, stigmatise them, and try to discredit them. And this is what we see in invisible conditions.’

Colleagues may feel jealous that someone with Long Covid has time off work or isn’t able to keep up with their usual levels of productivity. Friends and family who’ve avoided the ongoing form of the illness may believe they’re exaggerating the largely self-reported symptoms.

Even GPs diagnosed with Long Covid said they felt guilt for getting sick during ‘fight against covid.’

The impact of Long Covid stigma and where we go from here

What this will look like for Long Covid sufferers over time has yet to be seen. Following the perception of chronic illness overall, it’s likely that ‘self stigma’ – when people believe the negative labels ascribed to them – will arise.

‘Self-gaslighting can make an individual’s mental health spiral downwards at a time when they need to feel empowered to make changes and adjustments,’ says Dr Claire.

She adds: ‘If someone feels their symptoms are not being taken seriously, or worse disbelieved, they will feel invalidated. This is likely to exacerbate their emotional difficulties.’

Physical symptoms may also worsen. Tina, whose practice revolves around the theory ‘there is no pain without the brain, and no brain without pain’ says: ‘The shame that is caused by the stigma and isolation can sometimes be experienced worse than the condition itself – especially when it’s those closest to the patient who do not believe them.

‘It puts pressure on that relationship. It increases the stress, which in turns increases the tension in the body. This has a huge detrimental effect on the pain and other physical symptoms.’

According to Dr Nisreen Alwan, Associate Professor in Public Health for Medicine at the University of Southampton, we need an approach that focuses on morbidity as well as mortality going forward.

‘Death is not the only thing to count in this pandemic,’ she said. ‘We must count lives changed.’

As much as the word unprecedented has been bandied around a lot in the last couple of years, it is true in the case of Long Covid. Not everyone who struggles to grapple with the intricacies of the virus is doing so with bad intentions.

Regardless of the reasonings behind them, though, the negative impact of judgements and assumptions is felt by the people who need our empathy most.

Through the myriad lessons we’ve learned during the pandemic, it seems we’ve failed to heed our own warnings to #bekind.

When someone relives their experience with Long Covid, on social media or in person, try to avoid conforming to these conscious or unconscious biases. Rather than questioning or judging, aim to understand their lived reality – and treat them with compassion as a result.

As Dr Alwan says: ‘Assumptions have been made about the nature, cause, and mode of treatment of Long Covid, despite a lack of evidence to support them.

‘Acknowledging we do not know everything does not mean inaction. It means informed action with honesty.’

Long Covid – what you need to know

Most infections with Covid resolve within the first four weeks. Long Covid is a term commonly used to describe symptoms that continue or develop after you’ve had the initial virus.

An estimated 1.5 million people in the UK (2.4% of the population) have reported experiencing Long Covid symptoms.

The recovery time is different for everyone. The length of your recovery is not necessarily related to the severity of your initial illness, or whether you were in hospital.

According to the latest reports, Long Covid is most common in people aged 35-69 years, women, people living in more deprived areas, those working in health care, social care, or teaching and education, and those with another activity-limiting health condition or disability.

Common Long Covid symptoms include:

  • Extreme tiredness (fatigue)
  • Shortness of breath
  • Chest pain or tightness
  • Problems with memory and concentration (“brain fog”)
  • Difficulty sleeping (insomnia)
  • Heart palpitations
  • Dizziness
  • Pins and needles
  • Joint pain
  • Depression and anxiety

If new or ongoing symptoms do occur and they are causing you concern, you should always seek medical advice and support.

For more information and support you can apply to join the Long Covid Support Group on Facebook, which currently has more than 50,000 members.

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