Do you have energy limiting chronic illness (ELCI)?
Are you dealing with health condition(s) that cause symptoms such as physical fatigue, mental fatigue and pain, which significantly restrict your day-to-day activities?
People with ELCI have a range of medical diagnoses, and our symptoms may vary and fluctuate, but the overall impact on our lives is of energy impairment. We have to carefully ration our energy every day in order to avoid aggravating our symptoms. Read more about energy impairment.
Examples of ELCI include: ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, lupus, chronic pain, Ehlers Danlos syndrome, long Covid, as well as conditions causing: respiratory failure, kidney failure, inflammatory bowel conditions, sickle cell disease, autoimmune conditions, neurological conditions, endocrinological conditions, and rheumatological conditions.
If this is you, you are part of an invisible community
Government research tells us that problems with stamina, breathing or fatigue are the second most common form of impairment or disability in the UK. But we are invisible – often confined to our homes or beds, neglected by the medical profession and unable to participate in ordinary life.
According to our research, people with energy limiting chronic illness (ELCI) experience high levels of social isolation, stigma and lack of representation.
People with ELCI have rights as disabled people, but many of us are not aware of this. And we are certainly not getting access to those rights.
People with ELCI have much in common
While our individual medical diagnoses vary, as a group of disabled people we have many things in common:
- Often dismissed or told our conditions are ‘all in our heads’ when we go for medical help.
- Many of us go years – even decades – without proper diagnosis or treatment.
- Often bedbound or housebound and extremely isolated. Read our FAQ page.
- People around us do not believe in our conditions, how they affect us, or our needs.
- Difficulty accessing benefits and other Government support.
- Employers, councils, venues and businesses are unwilling to make adjustments that would allow us to participate more in society, such as home or flexible working, and public rest spaces.
- Our conditions are often under-researched due to lack of funding or interest from the medical community.
- We feel invisible, voiceless, even hopeless.
It’s time our voices were heard
We need to be seen, believed, and heard: by doctors, by politicians, by the media and by society as a whole. That’s why we started Chronic Illness Inclusion CII.
Chronic Illness Inclusion is run entirely by people with energy limiting chronic illness (ELCI), and we are working together to make life better for every one of us.