Did you know that approximately one-third of working-age disabled people have an Energy Limiting Condition? This equates to around 4.7 million people in the UK alone, and yet there’s still a profound knowledge gap when it comes to these conditions and how they impact individuals – especially in the world of work.
Energy Limiting Conditions (ELCs) are a type of disability. These conditions typically affect many different functions in the body, rather than affecting a specific organ or limb. They limit the overall amount and pace of activity an individual can do, rather the type of activity. These conditions also tend to affect the reliability of activity – it may be that a person with an ELC can perform a certain task on one day, but not necessarily the next day.
An Energy Limiting Condition is not a medical diagnosis in itself, but rather an umbrella term that describes the daily experience of people living with various conditions, which share key characteristics. In a physical sense, these generally include life-altering fatigue, chronic pain, cognitive dysfunction, and ‘payback’ or post-exertional malaise – this is where the impact of a person having to over-exert themselves and go above their daily energy envelope, e.g. to attend a compulsory meeting or fulfil a deadline, hits them at a later point in time, leading to a significant exacerbation of their symptoms that they must recover from.
The pitfalls of payback and symptom exacerbation can be somewhat avoided by approaches such as pacing – this is where a person learns to manage their available energy carefully, incorporate physical and mental rest into their day more regulary, and avoid over-exertion. However, normalising pacing and activity management in our fast-paced and achievement-driven world can be a battle in itself, let alone how this translates to the workplace.
The fatigue that people with ELCs experience is biologically different to the everyday tiredness or exhaustion that a non-disabled person may experience, and the two are not comparable. Therefore, many people with ELCs use the phrase ‘energy impairment’ to describe their fatigue and better reflect this significant difference in their daily lives.
However, the shared experience of Energy Limiting Conditions spans beyond physical symptoms alone. Those with such conditions also frequently share the isolating experience of being subjected to medical gaslighting from GPs or consultants, or disbelief from the people around them, about the existence or severity of their condition. This effect can also be exacerbated by the fact that many ELCs can be invisible and/or less-visible to others – not only the debilitating symptoms that people live with, but the vast amount of time and energy that must go into condition management and keeping on top of any medical treatments or protocol too. It is often difficult to truly recognise the toll that ELCs can take on the lives of the people living with them, but it is more important than ever before that all we all try, and learn how to be allies.
Energy Limiting Conditions At Work
People with ELCs may find themselves disadvantaged when seeking work or being in employment – whether they were diagnosed with their condition before entering the workforce or have acquired an ELC during their working life as an employee. Although these difficulties may be partially due to the debilitating daily symptoms they manage, the effect is also exacerbated by prejudice and social barriers.
When ELCs are misunderstood by managers and colleagues, and the stigma of disbelief goes unchallenged, there can be negative consequences. These consequences can be far-reaching, and lead to the individual:
- Feeling that they are not entitled to identify as disabled in the workplace
- Being less likely to share information and seek support at work for fear of being
- disbelieved or dismissed
- Not accessing the disability support or workplace adjustments they are entitled to as they do not feel comfortable disclosing their condition
- Masking their difficulties at work and putting on a brave face, resulting in demoralisation, burn-out and presenteeism (presenteeism is defined as the practice of being present at one’s place of work for more hours than is required, especially as a manifestation of insecurity about one’s job)
- Finding that working relationships with colleagues are strained or eroded by distrust
- Feeling that there is no choice but to push through symptoms at work to the point of a deterioration in health
- Having to take extended periods of sickness absence
- Leaving work unnecessarily due to ill health because support options and/or workplace adjustments have not been fully explored.
Living with an ELC is tough, and it affects every element of an individual’s life. Not every person with an ELC is able to work or and not everybody is seeking work, and this should never be assumed, but there are thousands of skilled individuals in the UK alone who are looking for accommodating roles with innovative organisations. As this number is only set to rise, it’s essential that businesses become more knowledgeable about ELCs and learn how to better support employees with ELCs in their workforce.
Energy Limiting Conditions (ELCs)
