Long Covid, ELCI and workers’ rights

Chronic Illness Inclusion responds to a report on workers’ experiences of long Covid

The recent Trade Union Congress (TUC) report on workers’ experiences of long Covid marks a milestone in our response to the Covid-19 pandemic.

The TUC’s survey of more than 3,500 workers finds that a third had symptoms of long Covid for more than a year. It is now clear that long Covid can be a life-changing illness. For some, it is creating enduring disability.

Just as importantly, this report is the first time we have talked about disability equality in relation to long Covid. The focus until now has rightly been on improving medical understanding and treatment of the condition. But the time has come to look beyond fixing individual bodies, and focus on changing society’s response to long Covid, Addressing employers’ legal duties towards disabled workers is a key place to start.

Shockingly, more than 50% of workers with long Covid reported discrimination in the workplace since becoming ill. The majority of them were key workers: in many cases, they are the ones who have seen us through the pandemic without adequate PPE to keep themselves safe.

Chronic Illness Inclusion has developed a disability rights approach to chronic illnesses like long Covid. We were, therefore, delighted to be invited by the Disabled Workers Committee, along with a representative from Long Covid Support, to respond to the this report.

Long Covid is an ELCI

Firstly, in terms of lived experience of the condition, long Covid has the same core features as many other ELCIs.

9 in 10 respondents to the TUC’s survey reported fatigue as a main symptom. In our research among the chronic illness community fatigue, or limited energy, scored highest for being the most restricting feature of a health condition, followed by pain. This was the case for conditions like ME/CFS and fibromyalgia, as one might expect. But it also applied to a wide range of other auto-immune, neurological, musculoskeletal, respiratory, and other systemic diseases.

The 30 most frequently mentioned health conditions reported in a survey by Chronic Illness Inclusion Project in 2018 (excluding co-morbid mental health conditions)

So long Covid comes under the umbrella of an energy-limiting chronic illness (ELCI). Other key symptoms of long Covid reported in the TUC study also match with common features in the experience of ELCI generally. Cognitive fatigue and dysfunction (sometimes known as ‘brain fog’) were high in the list of symptoms, as was the fluctuating trajectory of the illness. Our report and briefing, produced in collaboration with Leeds University, lists the key feature of ELCI as energy impairment, cognitive fatigue, fluctuation and ‘payback’ (sometimes referred to as post-exertional malaise).

Given these similarities in lived experience between many chronic illnesses, we believe the pathway to social change lies not on the basis of diagnosis, but on the basis of this common experience of impairment – by which we mean the way a disease impacts on everyday life.

And we developed the term energy impairment to describe this experience

Disbelief and disability discrimination

The second thing that unites long Covid with other ELCIs is the experience of disbelief.

The TUC report finds that many instances of discrimination against workers with long Covid are bound up with disbelief. One in five said their employer denied them reasonable adjustments because they didn’t believe the impact of their symptoms.

Disbelief was a key theme in our research among people with chronic illness. In fact, we propose that this disbelief is systemic, relating to the fact that fatigue has no biomarkers, and can’t be verified by medical diagnostic technology. As a consequence, fatigue is so often invalidated as the basis of impairment or disability. This is why we speak of energy impairment instead of fatigue.

Our research identified that disabled people with ELCI experience microaggressions of disbelief, both in the workplace and outside it. We may not be told outright that we are faking or exaggerating our disability, but we receive subtle messages, or glances, that indicate suspicion and doubt. Examples of these microaggressions include the phrases “you look fine”, “you don’t look disabled” or “have you tried exercising/losing weight or thinking positively?”

While disbelief underpins much of the discrimination towards people with ELCI in the workplace, these microaggressions, repeated over time, also produce trauma. This trauma sometimes causes people with ELCI to develop comorbid anxiety or depression, and the combination of mental distress alongside their physical health condition makes it much more likely that they will exit employment, even if there has been no outright discrimination.

A united advocacy movement for  ELCI

CII believes that in order to challenge disbelief and discrimination and strengthen disability rights for workers with Long Covid as well as other ELCI, we need to advocate on the basis of impairment, not diagnosis. This is why we speak of energy impairment.

Whether we live with lupus, POTS, fibromyalgia ME, long Covid, or are recovering from cancer treatment, the adjustments people with ELCI need in work are broadly similar. They are about the time, pace and place of work. And they relate to the same core features of ELCI such as cognitive fatigue and dysfunction, fluctuation and payback.

We need a united approach to ELCI and energy impairment. This means that, for the purposes of achieving disability equality, we must move beyond heated media-driven debates about the cause of our symptoms. We must put the politics of diagnosis aside. For we, as disabled people, know best about how our conditions affect us. We know better than doctors what our needs  for participation in work and inclusion in society are, especially when our diseases are poorly understood.

The arena of disability rights has evolved. We now have a disability equality approach to neurodiversity and mental distress, as well as physical and sensory impairments. We must now develop these frameworks for ELCI and energy impairment. There are important policy areas like disability leave, Access to Work and flexible working that need to be applied and developed to include ELCI. We must also lobby for a fairer social security system that supports those who have to work part-time due to an energy impairment.

CII estimates that 1 in 3 disabled people of working age lives with ELCI or energy impairment. We are a large section of the disabled population, both within the workforce and among those excluded from work.

It’s time we stood together to fight for our rights.

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