When Covid-19 restrictions were lifted in March 2022, Scotland like much of the rest of the world was breathing a collective sigh of relief with the prospect of life returning to some form of normality and freedom. But for approximately 3.5% of the population (Covid-19 Recovery Committee), a virus that had become described by many as ‘just like a cold’, continued to cause daily suffering for weeks, months and sometimes even years after infection. For those who live with the often-debilitating effects of long Covid, this represents a hidden disability and many now feel left behind, ignored, and stigmatised.
Long Covid and disability
Abuse of the disabled is often associated with ignorant members of the public that leave angry notes on car windscreens in disabled parking spaces, or call those with hidden disabilities ‘frauds’ if they can walk from the car. Sadly, awareness and compassion are still often lacking in modern society, and it may come as a surprise to many that 80% of disabilities are hidden, highlighted by disability awareness charity, Purple. The widely recognisable wheelchair symbol is perhaps deceptive as the disabled suffer from a wide range of conditions such as epilepsy, autism, multiple sclerosis, brain injury and sensory processing problems.
According to the This Is Me Agency, of the approximately 1.2 million wheelchair users in the UK, around a third are ambulatory, so it may be possible to walk or stand some of the time to varying degrees but still be very much disabled. The lack of awareness and stigma associated with perceived benefit fraud is an incredibly stressful and dehumanising experience for many with hidden disabilities, adding to the difficulty of coping with their health condition. The Blue Badge system is not easy to cheat, if someone looks young or has a nice car, believe me this is most likely entirely irrelevant. Disabled people can be 20 years old; they can have great jobs and just need some assistance with the practicality of daily living due to health problems outside their control.
The Equality and Human Rights Commission (EHRC) has stated that long Covid is not automatically classed as a disability but can amount to one depending on impact. Symptoms vary and come in many combinations but the most common include extreme tiredness, chronic pain, anxiety, sleep problems, headaches and confusion or brain fog. The chronic pain, also known as post-viral myalgia, can feel like constant, severe growing pains in the legs or arms that prevent you from being able to stand or do basic tasks like showering or cooking. It can present as joint pain, that makes previous exercise or work incredibly difficult, and for some, impossible.
The term ‘fatigue’ carries the connotation of being ‘slightly weary’, but the chronic fatigue with long Covid can be completely disabling and experienced as an exhaustion that does not improve with rest. Doing a little too much one day can lead to an intense crash for days afterwards, known by sufferers as ‘post-exertional malaise’ or PEM. Many have reported being unable to leave their bed, have had to leave their job or education, and have become unable to cope with family responsibilities. I have heard the stories of single parents in absolute despair and at times suicidal, no longer being able to care for their children on a basic level. Yet a February 2023 YouGov survey in Scotland found that while 94% of people surveyed have heard of long Covid, only 76% think it can be serious.
Finding help in a sea of confusion
You only have to spend some time on any one of the numerous Facebook long Covid support groups to get a picture of the many thousands of people with diverse medical challenges, but having lack of validation in common. The groups are filled with stories of family and GP gaslighting, friends turning their backs on long haulers, being treated as though they are lazy, imagining or exaggerating. The Covid Recovery Committee in 2023 found that there is overwhelming evidence for a lack of support from the public, medical professions, employers, and policy makers in Scotland.
While many with long Covid do have supportive families, others have not been supported by their partners or loved ones, leading to family breakdown and mental health problems. In terms of medical validation, GPs were initially at a loss for how to help people physically as the virus was so new and unusual. Hearing “We just don’t know enough yet, but hopefully you should improve in time.” can be incredibly demoralising.
Initial medical advice was ‘rest and do graded exercise’, but from September 2021 the World Health Organisation has recommended a comprehensive pacing approach. Described in The Washington Post as an ‘activity management strategy which requires people to carefully limit their daily activities, reduce their energy expenditure and track their symptoms’. This entails a change of lifestyle, and personal loss for many of what they previously could manage and enjoy as a fulfilling life.
Diagnosis of long Covid has always been relatively straightforward, you just need to advise your GP of symptoms that are present for four weeks or more, following infection. Yet finding effective treatment is not so easy and many are left with no help at all. The chronic pain associated with post-viral illness can often be eased with anti-inflammatories, but over the counter painkillers are advised against for long term use to avoid damage to the stomach lining. Finding the source of severe symptoms has proven to be a challenge; to quote Yale Medicine, “Severe cases of long Covid can affect the body’s organs. But imaging tests don’t always show the origins of those symptoms” and “There is no one pill or strategy that helps everybody”. Often people reach out on social media for advice and emotional support to fill that gap, sharing tips on diet, supplements, and exercise. Frustration over a lack of medical help is understandably a common theme and the resulting effects on mental health, a stark reality.
For many who are immunosuppressed, elderly, or vulnerable, the dropping of restrictions represented a dangerous prospect; no more masks and requirements to test or self-isolate. For those who have experienced long Covid, this can also be said to be true. Research is indicating that reinfection increases the risk of long term illness, despite not necessarily having had a particularly severe infection (Scientific American).
Wearing or not wearing a mask in some places at times became a political statement, muddying further the lack of medical clarity amid pandemic misinformation. If someone chooses to wear a mask in public, they may well be vulnerable to infection and not just Covid-19. It would be natural to want to forget the fear and uncertainty of 2020 but not everyone is able to, having had their lives changed drastically for an indefinite period.
Support, going forward
With potential waiting times of weeks and months for long Covid clinic support, patients risk facing impacts to their ability to work. There is also no guarantee that physiotherapy or occupational therapy, for example, will have any measurable benefits. If you are severely impacted, however you may be entitled to adult disability payment, child disability payment, attendance allowance, universal credit (limited capacity to work), personal independence payment or carers allowance. Applications are not always easy to fill out when suffering with health problems and criteria are strict, requiring medical evidence from a GP and relevant medical specialists.
The NHS backlogs following the pandemic created a greater socio-economic disparity in the access to healthcare; with the wealthier finding they needed to go private for specialists and lower-income families being forced to wait indefinitely. Public Health Scotland notes an unprecedented national health inequality that now is the worst in western and central Europe. So medical evidence is not always possible if a private specialist is unaffordable. It is possible, however, to get up to date advice and help with disabilities through Citizens Advice Scotland, including support filling out forms.
The lives of children with long Covid are impacted in a unique way. It was a deeply concerning trend during the pandemic that children and young people were showing signs of long-term illness despite having mild infections. Studies by UK Charity, Long Covid Kids, has found that 12.8% of 2-16 year olds with long-term symptoms say that it limits their activities a lot. Children have been forced to leave school, stop extra-curricular activities, withdraw socially and deal with a sudden onset of illness when they would usually be bursting with energy.
At this age, a recovery time of several months or years represents a far larger impact than for many adults as there is a very real experience of falling behind one’s peers. Long Covid Kids have an excellent support handbook which is available for free, offering information and guidance for families. In terms of raising hidden disability awareness in general, the Make A Difference Campaign is free to all schools in Scotland, opting for an early intervention approach at primary age to prevent future bullying or hate crimes.
It isn’t yuppie flu
Increasingly, long Covid is being connected to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), an historically understudied illness which has carried the stigma of being an unexplained, and therefore psychological condition. While viruses are not the only cause of ME/CFS, Akiko Iwasaki, an immunobiologist at Yale University explains for Time, “There are a dozen other pathogens that are known to cause these post-acute-infection syndromes, some are very well studied, whereas others are not at all documented.” Yet while people can suffer from ME/CFS for their whole lifetime, it has been called ‘yuppie flu’; holding a stigma of being a figment of the imagination this condition has also fallen prey to medical misogyny, with women being disproportionately affected.
The concept of the ‘hysterical female’ in the eyes of the medical profession has not exactly advanced good, peer-reviewed scientific research. Covid-19, however, brought a global, apocalyptic wake-up call with far-reaching health ramifications on an unprecedented scale. A recent paper by Xu et al. hints that a blood test to diagnose ME/CFS is a real possibility in the future. At present, diagnosis is a kind of elimination process and not one that any specialist would like to give as there is little treatment, except for rest and moderate exercise. This has implications if you are suddenly bed-bound and unable to work, care for family or your own basic needs. To be able to have a straightforward blood test would eliminate a huge amount of doubt from family and society. Prompt access to intermediate government benefits should be a right with accurate medical diagnosis.
While there are hopes for improved research, we need to recognise that long Covid is a hidden disability for many. We need to understand that post-viral illness does not come from a snowflake’s imagination and can have devastating personal consequences. Those impacted likely do not appreciate or benefit from a battleground narrative; there are no warriors and antagonists in a draw of biological uncertainties, sometimes compassion comes out tops. Those who live with invisible disabilities can teach a lot about love and an appreciation of life. It could be the joy of seeing an unusual woodland mushroom or the appreciation of a crazy sunset, but ultimately people want to be able to live ordinary lives. If someone says that they are a long hauler, assume they could really be struggling – believe them, because it is real.
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