Currently I am existing. My life is lived day to day. I can’t plan anything for two reasons;
Due to my cognitive dysfunction/ fatigue I struggle to plan even a shopping list. It can take me days.
Due to fluctuating fatigue/ POTS symptoms I may not be able to do said plan.
My routine is very inflexible. I can do work towards a IG post in the morning. I do 20 minutes recumbent cycling. I potter about a bit, have my lunch, maybe go for a walk in the afternoon if I have some energy. Then I normally sleep for an hour or so. This is to ensure that I have enough energy to deal with the girls, and dinner, when they come back from school. Washing up is left until the next day. I can’t cook and then wash up without ending up on the kitchen floor with pretzel legs. By 7 pm all I can do is crash on the sofa and watch some TV. Bed at 9pm.
Any deviation from this and I am guaranteed a return of my Post Exertional Malaise/overwhelming fatigue/ intercostal neuralgia/worsening brain fog and I’m back into bed for the afternoon/day/week.
Today I had a work chat - “just to see how things are going Kerry?” Word finding, forgetting what I was talking about half way through a sentence and shortness of breath aside it was really, really hard to explain all of this to someone who has no concept of what it's like living with a chronic illness. Questions are black and white. “Do you feel you are getting better?”
I mean yes - if you look back to how I was when I was admitted with desaturations, confusion, investigated for chest pain, unable to stand up to do the washing up as I might faint but then no - if you think that now I can’t walk for more than 30 minutes, I can’t talk for long without becoming short of breath and my heart racing, I have to sleep in the afternoon, my children have to accompany me if I go to a shop as I can’t manage a list or a card machine.
In my opinion Long Covid is very very grey.
Million Missing Voice Global - a group established to help spread awareness for the millions missing from ME and other invisible illnesses circulated the “I already have a job… getting through the day” report today. It totally sums up everything I am going through and probably you too. I just wish I had had this before my meeting. Maybe I could have articulated myself better. All work can offer me is a phased return - increasing hours gradually. I know so many people try to do this but after a week they relapse exhausted from just a couple of hours a day. And then one has to consider the knock on effect work has to the energy left to shower, eat, and care for our children.
The ‘I already have a job … getting through the day’ report, by Chronic Illness Inclusion and Leeds University Business School, sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs).
Although one-in-three disabled people of working age experiences problems with stamina, breathing or fatigue, the report says that their needs are not reflected in the workplace, in legislation, or by disability assessments like the Work Capability Assessment (WCA).
Despite ELCIs affecting almost 5 million adults in the UK, these people are hidden within disability-related policies because their lived experiences of illness and impairment is widely misunderstood, often discredited, denied and disbelieved.
Lack of knowledge about ELCIs and how reasonable adjustments should work, make it impossible for people with these conditions do paid work. The rapid move to home working during the pandemic shows that such change is possible. It is imperative that employers continue such beneficial practices.
People with ELCI who are unable to work, or can’t work full-time, face further barriers because of the way all benefits assessments are designed and carried out. Within an already punitive system, there is no way to factor in the unpredictability of conditions like, ME/CFS, Ehlers Danlos Syndrome, Multiple Sclerosis, Long Covid and numerous other ELCIs
Executive Summary of the Report
This report presents the findings and recommendations from a study into social inclusion, employment and social security for disabled people with energy limiting chronic illness (ELCI) . The study forms part of the Chronic Illness Inclusion Project (CIIP), a participatory research project by, and with, the chronic illness community in the UK . The first phase of research focused on chronic illness and disability identity, including a survey of over 2,000 disabled people . This report focuses on the second phase of research, involving in-depth discussion of participants’ experiences of employment and social security.
People with energy limiting chronic illness form a discrete sub-group of disabled people.
Work can be bad for health with ELCI. Energy impairment affects the amount, rather than the type, of activity people can do and aids and adjustments cannot fully mitigate its impact.
In the workplace, inflexible, performance-based and rigid human resource policies and practices are a barrier to employment and a lack of autonomy and control risks exacerbating illness.
There is a need for job carving and job brokering agencies, such as Astriid, who can maximise opportunities for people with ELCI by working with employers to specifically create suitable jobs.
For social security, disability assessments fail to account for energy impairment, especially its key features of payback, reduced capacity and cognitive dysfunction.
This report may be timely in addressing the circumstances of those newly experiencing ‘Long Covid’, which appears to impact approximately 2% of people who remain ill with Covid after three months.
ELCI and Work:
One in three disabled people of working age in the UK experiences impairment of stamina, breathing or fatigue. This is the current closest match to the concept of ELCI. Despite the size of this group, employment and social security policies and systems have not considered or been designed for the particular needs of this group of people. This report outlines some of the failings of these systems and policies and underscores the importance of taking account of the lived experiences of people with ELCI to improve provision in the future.
People with chronic physical illness experience a diverse and wide-ranging set of symptoms, which impact on their daily lives and, importantly, their ability to work. Until now, policy makers have identified this group through various categories of medical diagnosis, or through the catch-all term ‘long-term health conditions’. This report contends that people with energy limiting chronic illness form a discrete sub-group of disabled people.
This group has remained hidden within disability-related policies because their lived experiences of illness and impairment are widely misunderstood and often discredited, denied and disbelieved.
The consequence of this is disability assessments that fail to account for impairment with chronic illness; a social security system that is disabling rather than enabling; and a lack of appropriate support and adjustments in employment.
The majority of our participants had previously had employment in high-skilled professional roles but were now largely not engaged in paid work. When asked about social inclusion, our participants reported that having a sense of meaning or purpose in life was very important to them, as was social connectedness.
The meaning of social inclusion for our participants centred on these factors. Paid work was not the only route, and typically was not the best or even a viable route, to social inclusion.
People with ELCI are excluded from employment by a complex interaction of impairment or health with social, structural, and systemic barriers. From our research, the primary limitation for participants with ELCI was the amount, not the type, of work, and the unpredictability of work capability from day to day.
Some had no, or few, productive hours of energy left after essential activities of daily living such as washing and dressing.
These limitations are much less easily mitigated by aids and adaptation, or typical adjustments to the work environment; there are no aids that give someone more energy. More critical to the inclusion of people with ELCI in the labour market are adjustments such as reductions in working hours, working from home, flexibility over hours and high autonomy.
Work itself can be disabling. For many people with ELCI, work simply isn’t possible. But for those with some capacity for work, the nature of work can be disabling – performance-based and rigid human resource policies/practices are barriers remove autonomy, which risks exacerbating illness. Lack of understanding of ELCI as a type of disability also creates unnecessary barriers to disability disclosure and the provision of necessary adjustments.
Information and training about ELCI for employers, recruitment managers and line managers is key to increasing employment opportunities. In contrast to other impairment groups, employment support intermediaries to specifically broker job opportunities for people with ELCI are almost non-existent, except for Astriid. This means that employers are not informed or incentivised to create job opportunities that maximise the opportunities for people with ELCI. There is a need for developing and resourcing organisations like Astriid who work to maximise opportunities for people with ELCI by working with employers to specifically create suitable jobs.
Employment policy and social security policy must be properly joined up in order to improve the lives of people with ELCI. A robust social security system is key to ensuring social inclusion and participation for people with ELCI who have no or very few hours in which they are able to work, as well as those who can work part-time and can’t earn enough to support themselves.
As the gateway to social security entitlement and employment support, the Work Capability Assessment (WCA) was a key feature of life for our participants. However, their experiences demonstrated that WCAs fail to account for energy limiting chronic illness, especially its key features of energy impairment, payback, reduced capacity, cognitive dysfunction and diverse illness symptoms. WCAs also fail to measure the key indicator of employability for this group, which is the number and predictability of productive hours. This results in incorrect decisions, disentitlement to support and a distressing appeals process. The overall system results in a deterioration in health and a pervasive sense of insecurity that undermines health and pathways into employment.
The WCA is based on a flawed and discredited model of ‘disability assessment medicine’ (DAM) that dismisses ELCI as a form of impairment and instead attributes incapacity for work to personal failings. DAM construes the lived experience and testimony of people with ELCI as contentious, perpetuating misunderstanding and myths surrounding the impairment and its symptoms. The experiences of our participants demonstrate that this results in a social security system that is a hostile environment based on adversarial relations for people with energy impairment. The division into ‘severely disabled’ or ‘just common health problems’ does not reflect the reality of lived experiences of people with 9 ELCI, which is of chronic illness beyond the scope of ‘common health problems’ and frequently in the ‘severe’ range.
The culture of disbelief which has characterised attitudes to ELCI means that people with ELCI live in constant fear of suspicion, judgement and hostility from the public, as well as from benefit assessors and even medical professionals. The fear of being seen engaging in activity, and reported to the DWP or mis-assessed for benefits, is a key barrier to social inclusion reported by participants. Anxiety and insecurity arising from this undoubtedly results in people with ELCI being further away from work, rather than closer to it.
The Context of Covid-19:
Although the research informing this report pre-dates the Covid-19 pandemic in 2020, there is evidence that approximately 10% have at least one symptom for three weeks and 2% of those infected by the virus remain symptomatic after three months. This condition has become known as ‘Long Covid’. Fatigue, post-exertional malaise and cognitive dysfunction are reported as the most prevalent symptom of ‘Long Covid’, with nearly half of patients having to reduce work as a result. ‘Long Covid’ may emerge as another form of ELCI, resulting in a new cohort of disabled people unable to remain in full-time employment and facing income insecurity. This report is therefore timely in addressing their circumstances.
It is also timely in addressing the kinds of flexible working practices required by people with ELCI to promote employment. Remote working, facilitated by video conferencing technology, swiftly became the norm at the start of the Covid-19 pandemic. The culture change that this shift entailed must be harnessed into strategies for Equality, Diversity and Inclusion into the future.
This report is long overdue in revealing the extent of exclusion of people with ELCI from wider society and, where possible for them, paid work. This group has for too long remained hidden. The time has come to listen to the lived experience of people with ELCI and to formulate policies and services that respond to their needs, in order to empower them to participate in society and avoid further lost talent.
To read report in full: