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This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.

People with long COVID can struggle to return to, and stay in, employment due to fluctuating and unpredictable symptoms. Interviews with people with long COVID highlighted the problems they face.

The researchers call for employers to recognise that some staff with long COVID could be considered disabled under the Equality Act (where long COVID has, or is likely to have, a substantial and long-term negative effect on an individual’s ability to undertake normal daily activities). Workplace adjustments and flexible support where necessary help employees return to and stay in work.

The researchers hope their findings will help employers to support staff with long COVID.

More information about long COVID can be found on the NHS website.

The issue: returning to work with long COVID

According to the National Institute for Health and Care Excellence (NICE), people have long COVID if they have symptoms (such as fatigue and brain fog) 12 weeks or more after their initial infection. In March 2023, the Office of National Statistics estimated that almost 2 million people in the UK experienced ongoing COVID-19 symptoms for at least 1 year.

Research has shown that physical or cognitive exertion and stress trigger symptoms in most (up to 87%) people with long COVID. Readiness to return to work can be difficult to predict because of the fluctuating nature of long COVID.

The Equality Act 2010 protects people with disabilities from unlawful discrimination and facilitates welfare and workplace support. Employers are obliged to consider the effect a condition has on an individual; decisions on whether someone is considered disabled are taken case-by-case, depending on personal circumstances.  

The current study investigated the experiences of people returning to paid employment while living with long COVID.

Perspectives of people with long COVID returning to work

Researchers analysed phone and video interviews with 65 people with long COVID taken from 3 UK studies conducted between March 2021 and July 2022. Most (80%) were aged between 30 and 60. Many were women (75%) and white (69%). Half (51%) were employed in public sector jobs; healthcare and education (14% participants in each) were the largest sectors. The researchers asked people how long COVID affected their lives and its impact on employment and ability to work. They identified 4 main themes.

1. Altered identity

Most people were keen to return to work; they missed the social contact, the feeling of purpose and they worried about the financial implications of losing their job. Having long COVID could lead to a loss of identity. One person said: ‘[Long Covid] was suddenly a big part of my identity… A substantial part of my earning capacity all gone overnight…’

Some felt unable to disclose the full extent of their symptoms due to concerns about being judged as less capable or losing their job. They described debilitating, work-related symptoms such as problems with thinking, memory and making decisions.

2. Between classifications

Sickness absence policies that classify employees in binary terms such as healthy, ill, able or disabled do not accurately describe people with unpredictable illnesses that vary in severity, like long COVID. Some participants fluctuated between being (almost) able to work and being completely unable to work. One said: ‘[Policies at work] record you as either ill or you’re well, nothing in between.

Returning to work too soon could worsen symptoms, but having repeated sick notes was dispiriting; some felt they had to repeatedly show employers they had a legitimate illness. Remote working could mask the severity of symptoms.

3. Disabling or engaging workplaces

Some people were expected to maintain the same pace as their colleagues. Most said a standard 4-week phased return to work was not suitable for fluctuating impairments; more gradual and tailored returns were more effective. Some were offered additional workplace adjustments (flexible hours, frequent breaks and adapted roles, for instance): ‘[my employer] worked with me to look at how the role could be reduced… and then they created a new role that allowed me, to still add value. They reduced hours, they gave me complete control and flexibility of my diary.

When appropriate occupational health support was provided it could enable a sustainable return to work.

4. Adjustment work

People described doing so-called adjustment work to help them get back to work, for instance limiting the time spent sitting and standing, and cutting back on leisure activities to prioritise energy for work. One person said: ‘I’ve realised that being able to lie down or recline is the way for me to be able to get more out of myself because my fatigue is driven by being upright…

Some participants had to repeatedly explain symptoms to managers and colleagues and justify their need for workplace adjustments. For those who could not return to their previous level of work, the challenges of navigating the benefits system were heightened by their long COVID symptoms, such as fatigue and brain fog.

Why is this important?

The Equality Act is intended to protect workers’ rights. Employers are obliged to consider the effect of a condition, including long COVID, on an individual worker. Where long COVID has, or is likely to have, a substantial and long-term negative effect on someone’s ability to undertake normal daily activities, they could be considered disabled under the Act. This entitles them to workplace welfare and support, and reduces additional administrative work.

Long COVID is a relatively new condition, and employers may struggle to support their staff effectively. This research found that people who had the autonomy to shape their workload around fluctuating symptoms were able to keep working.

Research into long COVID is at an early stage, and more needs to be known about diagnostic tests, treatments and the consequences of returning to work. Sustained employment is linked with health benefits, but to benefit, people with long COVID need workplace and welfare support systems.

The study did not include many people who work in sectors such as supermarkets and transport. These groups are likely to have been exposed to COVID-19 early in the pandemic, when symptoms were more severe and before vaccines became available. The findings may therefore not be entirely representative of the general population.

What’s next?

These findings have informed a new study, funded by the Scottish Government’s Chief Scientist Office. The new work explores what having long COVID is like for professionals who deliver public services and work in demanding ‘front-line’ jobs, for instance nurses, teachers, ambulance clinicians and police officers. Its goal is to understand how employers can help people return to work, and to explore the impact of staff absences for long COVID on colleagues.

You may be interested to read

This is a summary of: Anderson E, and others. Episodic disability and adjustments for work: the ‘rehabilitative work’ of returning to employment with long COVID. Disability & Society 2024; 1 – 24.

The interviews in this study were carried out in 3 UK studies, from the Scottish Chief Scientist Office, the NIHR and the Economic and Social Research Council

Information from the same team on adults’ experiences of long COVID.

Guidance for healthcare professionals about helping people with long COVID return to work from the Faculty of Occupational Medicine.

An NIHR Evidence summary: How much does long COVID cost individuals, informal carers, and society?

Funding: This study was funded by the the NIHR, Chief Scientist Office and Economic and Social Research Council.

Conflicts of Interest: No relevant conflicts were declared. Full disclosures are available on the original paper.

Disclaimer: Summaries on NIHR Evidence are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that the views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.

NIHR Evidence is covered by the creative commons, CC-BY licence. Written content and infographics may be freely reproduced provided that suitable acknowledgement is made. Note, this licence excludes comments and images made by third parties, audiovisual content, and linked content on other websites.

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