Billianna Allen-Mandeville
In the UK, one-third of disabled people have an energy limiting condition (ELC), long-term, or chronic illness. This number is set to increase with the growing number of people being diagnosed with long COVID. With these rising numbers, and now that the world is returning to normal, there is a greater need for things to change for the chronically ill.
What is Chronic Illness?
According to the NHS, an ELC or chronic illness are conditions “which in most cases cannot be cured, only controlled, and are often life-long and limiting in terms of quality of life.”
People with chronic illnesses might be given a range of medical diagnoses, which means that their symptoms can vary and fluctuate from day to day and person to person. However, a common symptom is having an energy impairment. This results in many people feeling like they have to ration their energy throughout the day to avoid aggravating their symptoms.
In fact, the UK government found that problems with “stamina, breathing or fatigue” are one of the most prevalent forms of impairment or disability in the UK.
Often people with chronic illness might be heard describing their day or activities as spoons. Known as The Spoon Theory by Christine Miserandino, each spoon represents a unit of energy. Some people might have more spoons in a day than others.
For many, chronic illnesses are invisible and hidden to those around them. About 15% of the working-age population have a disability. Over half of those disabilities are not visible. Despite the high proportion of people experiencing chronic illness in the UK, there is little understanding of it.
How have people with Chronic illnesses been treated?
Throughout history, chronic illnesses have been denied or brushed aside by the medical profession especially when experienced by women. These chronic illnesses include Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS).
“People with ME have had to live with healthcare guidelines for 15 years which were ‘unfit for purpose, ineffective or harmful'”
According to the ME Association, people with ME have had to live with healthcare guidelines for 15 years which were “unfit for purpose, ineffective or harmful”. One of the guidelines’ recommendations included a prescribed treatment called Graded Exercise Therapy (GET).
GET suggests that chronic illnesses could be reduced if people did physical activity or exercise that raised their heart rates. However, sufferers felt that GET increased their symptoms. They also thought it placed blame and burden on them for not working hard enough to shift their condition.
Work, work, work
Despite the recent withdrawal of GET from the guidelines, there remains a lack of understanding of chronic illness. This means that there are still barriers to sufferers accessing education, health care, and work.
In these environments, people have reported being treated as ‘ill’, rather than disabled, or are suspected of faking or over-exaggerating symptoms. Such barriers can contribute to low mental health and isolation, which impacts their day to day life and relationships.
Many disabled or chronically ill people want to work. But, the modern workplace is not set up to support those who have fluctuating conditions. For example, inflexible working, limited paid sick leave, inaccessible offices, and stressful conditions are all factors that make working and workplaces exclusive.
As a result of the COVID-19 pandemic, the way we work transformed along with everything else. Working from home, remote working, online meetings, and ‘zoom etiquette’ became the norm. This transformation was lauded by disabled people for increasing access and inclusion, especially for those who had to shield.
“there are concerns that disabled and chronically ill people are being left out again.”
Whilst this was once dubbed a ‘remote access revolution’, with the world opening back up and restrictions easing, there are concerns that disabled and chronically ill people are being left out again.
What about the Equality Act?
Under the Equality Act, employers have the duty to make changes, or ‘reasonable adjustments’, to a workplace so disabled applicants or workers are not unequally disadvantaged.
Reasonable adjustments that someone could ask for could include “auxiliary aid”, which encompasses video calling platforms or flexible working. With that being said, people do not have to ask for changes to be made because the duty is anticipatory.
The Act also makes it illegal for disabled people to be discriminated against. If an employer fails to make reasonable adjustments, this will be deemed as unlawful discrimination.
Chronic Illness and Long Covid
The number of people with long-term conditions is expected to rise with health experts learning more about the after-effects of Covid 19. Specifically, people diagnosed with Long Covid experience issues like brain fog and intense fatigue similar to other existing chronic illnesses.
In fact, a study found that out of the people who tested positive for COVID-19 and were symptomatic, nearly one quarter of those had symptoms up to nine months later.
In response, long COVID treatment centres have been set up in the UK and around the world. For chronic illness sufferers, this awareness has given some hope that their experiences will be highlighted, and barriers and lack of accessibility will be gradually deconstructed.
It has just taken a worldwide pandemic for people who have lived with chronic illness for years to be acknowledged.
Featured image courtesy of Yuris Alhumaydy via Unsplash.Image licence found here. No changes were made to this image.
Billi Allen-Mandeville
I am a recent Master of Public Policy Graduate, Advocate and blogger. I like to write current affairs and opinion pieces, especially those involving equality and inclusion news.