Frequently Asked Questions
What is ELCI?
Energy Limiting Chronic Illness (ELCI) is a long-term condition characterised by a debilitating mix of physical fatigue, cognitive fatigue and pain, alongside other diverse or fluctuating symptoms. The overall impact of our condition is significantly reduced energy for essential everyday activity. Living with ELCI means having to carefully ration limited energy in order to accomplish basic tasks and avoid aggravating symptoms.
What is energy impairment?
Energy impairment is a term we have developed to convey the experience of energy limitation as a type of impairment or disability. Energy impairment is the main feature of ELCI but it may also be experienced by people with other impairments or health conditions as a secondary feature. Energy impairment is a form of hidden impairment.
How are people with ELCI disabled?
The term “disability” has different meanings for different people.
According to the Equality Act disability is a physical or mental impairment or health condition that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities. Energy impairment can drastically restrict nearly all forms of activity: both physical and mental. Severe forms of ELCI can prevent the most basic self-care tasks as well as cognitive function, such as communication.
According to the social model of disability, disability is a form of disadvantage or oppression that is imposed on top of our impairments by socially created barriers. These barriers can include negative attitudes and stereotypes, as well as policies, procedures and social institutions that wrongly exclude, disadvantage or discriminate against disabled people.
Another way of putting this is that, like other disabled people, we encounter ableism.
People with ELCI encounter many of the same barriers as other disabled people, such as inaccessible environments. Our research revealed a form of ableism directed specifically at people with invisible and energy limiting conditions.
Are the experiences and needs of people with ELCI the same as those of other disabled people?
People with ELCI have many of the same issues and needs as the wider disabled community. However, we also have needs and issues that are specific to us, that so far have not been addressed by other disability campaigning organisations. Some of these are:
- The issue of ‘institutional disbelief’ (or ‘gaslighting’) that many of us face, in which we are not considered competent to describe what is happening to our own bodies.
- Many of us are housebound, either fully or partly, and some of us are bedbound. This is not necessarily because of socially created barriers but because of the nature of energy impairment itself (see below).
- Many people with ELCI do not claim the label ‘disabled’ – even though they would benefit from doing so – and so do not seek out the support they could get from other disability organisations. CII hopes to draw attention to our status as disabled people specifically so that people with ELCI can participate more in the wider disabled community.
Housebound – isn’t this a “medical model” approach to disability?
There is a crucial difference between being housebound or bedbound due to severe energy impairment, and being trapped at home, or in bed, due to a failure of society to provide independent living support.
We recognise that the term “housebound” has negative associations for the UK Disabled People’s Movement because of its use historically to justify and naturalise the social exclusion of people who could access the community if external barriers were removed, and appropriate accessibility measures and assistance were put in place, but who were instead trapped inside their homes or institutionalised against their will.
However many people with severe energy impairment use the term “housebound” (and likewise the term “bedbound”) to capture a crucial, often painful, aspect of our lived experience that profoundly defines our world and our identity. Even with the best independent living support and the fullest accessibility measures currently available, many of us with energy impairment would still have this experience.
Being housebound, or bedbound, is about more than physical impairment. We can also be extremely sensitive to lighting, sounds, smells and temperatures. We may find interaction with strangers cognitively draining. We might fear a sudden attack of symptoms when we are away from our support network at home. Being so sensitive to so many external factors means that we need to stay in a familiar environment that we can control. Even when we are able to go out, this sensitivity and our limited energy budget may cause us to crash, or result in intolerable ‘payback’, lasting for days or even weeks.
Identifying ourselves as “housebound” does not mean we don’t want or need better assistance to improve our lives. In fact, acknowledging the existence of a housebound disabled population, as opposed to disabled people trapped at home due to social neglect, is crucial to providing lifeline domiciliary services to people with severe energy impairment.
Therefore, making this distinction between housebound and trapped at home allows us to place the needs of both groups on an equal footing.
What is Chronic Illness Inclusion doing to help?
Beginning in 2018, we carried out the first ever large-scale research into the lives of people with ELCI in the UK, led by, and for, disabled people. Our research findings are contained in our major report, Energy impairment and disability inclusion: towards an advocacy movement for energy limiting chronic illness. From that, we are developing our manifesto, a call to action to politicians, decision makers and the general public which we hope will go on to influence policies and perceptions around ELCI.
We are now at a crucial stage of our development: working towards becoming a user-led organisation that will be able to campaign for the rights of disabled people with ELCI in the UK.
How can I get involved?
Sign up to our mailing list to stay up to date with our progress. Let us know what you, as a person with ELCI, would like the Chronic Illness Inclusion to do on your behalf in the future. What do you most need to make your life better?
I am a policymaker: what can I do?
Read our report, look out for our manifesto and share them with your colleagues. Sign up to our mailing list to be kept informed of our upcoming publications and activities. We appreciate your support.
Don’t charities focused on individual chronic illnesses already do this work?
In many cases, yes. But these groups typically campaign for a single disease. They often focus mainly on medical research and treatment for these individual illnesses. This work is extremely important, but we believe that there also needs to be a focus on the common experiences, needs and rights of all people with ELCI, and currently this does not exist.
While medical research and treatment is a vital area of focus, there are also many ways in which society needs to change for those of us who cannot currently find cures. We hope that in the future CII will be working with individual campaign groups on projects in a way that will benefit all of us.
We also believe that currently policy makers do not include energy impairment as a disability category, which means decisions made do not even include us, so one key goal of CII is to get ‘energy impairment’ included as a disability category by policy makers.
What kinds of conditions do people with ELCI have?
In our survey of 2,300 respondents, respondents who identified as having ELCI were spread across several disease categories, most notably neurological and musculoskeletal. They also reported a significant rate of mental and behaviour disorders but these were co-morbid with physical health condition for 99% of respondents.