About the project

Chronic illness is more than just a diagnosis; it can become your whole world.

For too many of us, chronic illness means living a world apart – invisible, unheard and forgotten. We need to join together to be seen and heard.

What is the Chronic Illness Inclusion Project?

This is a research project where people with chronic illness are the experts. It will involve coming together online in various ways to share our knowledge. Join us here

There are two key questions we need you to answer:

How does society make life harder for people with chronic illness than it need be?

and

What are our priorities for changing the way society responds to chronic illness?

The Chronic Illness Inclusion Project runs until December 2019 and is part of the DRILL programme, funded by Big Lottery Fund. Read our full project outline.

How can I get involved?

Get Involved button

Subscribe to our mailing list to find out about opportunities for joining an online discussion forum, taking part in surveys, and contributing through our blog series.

 

 

10 thoughts on “About the project


  1. Is blindness classed as chronic illness? I am never going to get any better
    x


    1. Hi Pat,
      That is a very interesting question! We were just discussing amongst ourselves what the term “chronic illness” covers. The way it’s currently used on social media, with the hashtag #chronicillness , it usually refers to health conditions where loss of energy, fatigue and/or pain significantly restrict daily life and energy limitation is the main form of impairment. The term #spoonie has a similar meaning. It’s a metaphor for rationing small units of energy (you can google it and find definitions!). But away from social media “chronic illness” has a broader meaning, and covers a huge range of long term health conditions, some of which may cause visual impairment.
      That’s the long answer to your question. The short answer is we are not seeking to define in advance who does and who doesn’t have “chronic illness”, we’re much more interested in having the discussion. So please do join us if you’re interested in exploring more


  2. According to the NHS, Chronic Illness is:
    “A Long Term Physical Health Condition (also known as a Chronic Condition) is a health problem that requires ongoing management over a period of years or decades.

    A Long Term Physical Health Condition is one that cannot currently be cured but can be controlled with the use of medication and/or other therapies.

    This includes a wide range of health conditions including:

    Non-communicable diseases (e.g. cancer and cardiovascular disease);
    Communicable diseases (e.g. Human Immunodeficiency Virus (HIV) / Acquired Immunodeficiency Syndrome (AIDS));
    Certain mental disorders (e.g. schizophrenia, depression) and
    Ongoing impairments in structure (e.g. blindness, joint disorders).
    Examples of Long Term Physical Health Conditions include:

    Diabetes
    Cardiovascular (e.g. Hypertension, Angina)
    Chronic Respiratory (e.g. Asthma, Chronic Obstructive Pulmonary Disease (COPD))
    Chronic Neurological (e.g. Multiple Sclerosis)
    Chronic Pain (e.g. Arthritis)
    Other Long Term Conditions (e.g. Chronic Fatigue Syndrome, Irritable Bowel Syndrome (IBS), Cancer) etc.”

    So why is there a problem defining them?


    1. Hi Anthony, thanks for your comment and sorry not to reply earlier. We are interested in the way people use the term “chronic illness” on social media. As you say, chronic illness can refer to any long term health condition. However, within online communities of #chronicillness the term seems to be used in a more restricted way. We believe people identify with the term “Chronic Illness” on social media when their condition causes fatigue and/or pain that significantly restricts their day to day activity, and that people with long term conditions that are well managed and don’t significantly interrupt day to day living don’t tend to belong to the #chronicillness community.


  3. I understand that for some people, the medical model didn’t empower them and made them feel like they need to be cured. However, please appreciate that this is one of the disadvantages of applying models and expecting them to help everyone, nevermind the majority.

    Having M.E. (Myalgic Encephalomyelitis), I’m crying out for the medical model. As yet, the consensus is that it’s a physical illness but as yet there’s no consensus on a specific biomarker. The NICE Guidelines recommends CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy), so take a psychological approach.

    No amount of adaptations to a work place, would help my sick body perform to the level of a healthy person. Adaptations in a social setting; comfortable, tilted seating, no or low level background noise and so on, help to not make a high energy demanding trip out of the house more bearable but you still have to get wait to recover and suffer post-exertional exacerbation of symptoms (payback) in the meantime. Feeling ill doesn’t seem to fit the current benefit and disability insurance descriptors or the social model of disability.

    Most people with ME want the medical model, I would argue, so that they have what a lot of people with other illnesses and diseases get, referrals to a specialist consultant, diagnostic tests, treatment options and follow up healthcare from their GP (primary doctor).

    An acknowldegment that they’re illness is disabling whatever adaptations society makes, to be left alone and not be pressured or face expectations of rehabilitation back into work, training courses or education, would be one way of helping those who identify more with what I’m saying.


    1. Thanks very much for this insightful comment. We will be exploring the medical model and the social model and, as you say, what’s important in any model is whether it empowers us or not. We believe chronic illness has been left out of the narrative and it’s time we made our voice heard. Hope you’ll join us on the journey!


  4. I was going to reply but ‘C’ above has clearly expressed what it is to have ME (post viral fatigue). It is not ‘managed’ to any significant extent – unless you are able to put your feet up and do nothing!

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