Inclusion for people with chronic illness

“The Chronic Illness Inclusion Project (CIIP) grew out of finding my identity on social media as a “spoonie”. Through online activism, I discovered that so much of my daily reality and my struggle against oppression was shared by people who had different medical diagnoses than mine but a shared experience of chronic illness. I realised that, away from our online movement, there wasn’t a platform in the “real world” for us to join together to fight for change.

I am passionate about the social model of disability and this project is about applying some of its principles to our struggle, building a bridge between the chronic illness movement and the Disabled People’s Movement in the UK, and challenging perceptions and policies around chronic illness generally. I want everyone with chronic illness to live as fully as possible, with dignity and equal worth.”

– Catherine Hale, lead researcher

Read our recent Discussion Paper to explore the background and ideas driving our research and manifesto.

Subscribe to our mailing list to take part in building our manifesto for chronic illness by 2020.

The Chronic Illness Inclusion Project is hosted by the Centre for Welfare Reform , a member of Citizen Network. It is funded by Big Lottery via the DRILL programme of disability research.

Who we are

catherine hale

Lead researcher and project manager: Catherine Hale
Catherine is lead researcher and project manager on the Chronic Illness Inclusion Project. Catherine has worked as a policy researcher with Mind, Action for ME, the Spartacus Network and Inclusion London… read more and read Catherine’s blog.

stef benstead

Researcher (2018): Stef Benstead
Stef is an independent disability and social security researcher. She has previously worked with the Spartacus Network and has been lead author on a number of their reports… read more.

jenny lyus

Researcher (2017 – 2018): Jenny Lyus
Jenny is a disability rights and ME activist. She uses her limited energy to agitate for better ME research and against inappropriate clinical guidelines… read more and read Jenny’s blog.

Fran Halsall

Web design & editorial: Fran Halsall
Fran has an MA in Landscape Architecture and works on projects related to environment, health and wellbeing   She became involved with CIIP because of her own experiences of living with fibromyalgia and multiple sclerosis.

simon duffy

Project Director: Dr Simon Duffy
Simon is Director of the Centre for Welfare Reform and Project Director of the Chronic Illness Inclusion Project. In 2008 he was awarded the RSA’s Prince Albert Medal for his work on personalisation… read more.

Advisory Group

Alison Allam
Alison’s academic background is in Disability Studies and Social Policy. She is currently involved in regulation and inspection of health and social care services. Alison has personal experience of living with a chronic illness.

Sarah Campbell
Sarah completed her mathematics studies and then worked as a university academic while juggling both a chronic illness and a physical impairment. This led to a particular interest in how the social model and current support relates to both… read more and read Sarah’s guest post.

Liz Crow
Liz Crow is a disabled person and activist-artist working in performance, film, audio and text. She is a doctoral candidate undertaking practice-led research at University of West of England. In 1992, she wrote ‘Renewing the Social Model of Disability’… read more.

Victoria Clutton
Victoria has had ME for 20 years and has recently graduated with a Maths and Computer Science degree from the Open University. She is currently juggling her health, her first job and as much activism as she has the spoons for. Read Victoria’s guest post.

Geoff Jones
Geoff is a writer who has experienced severe chronic illness since childhood. Geoff was too ill with ME to attend school or manage home tutoring. As his health improved, he found accessing education was dependent on sympathetic personnel… read more and read Geoff’s guest post.

Donna Reeve
Donna is a disabled Disability Studies academic with experience of living with chronic pain and depression/anxiety. She contributes academic knowledge about ways of doing and analysing research as well as connections to existing literature in the field.

Anna Ruddock
Anna is a writer and anthropologist currently working part-time as a global policy advisor at the Wellcome Trust. When health permits, she is working on a book about health systems and medical education in India.  Read Chronic Illness and the Academy.

Patricia de Wolfe
Patricia has had ME and a collection of other complaints for many years.  Some of this time was spent slowly studying for a PhD in medical sociology.  She is now a trustee of her local ME group and helps members with benefit applications.  Read Patricia’s guest post.

Anna Wood
Anna has lived with ME for over 15 years. She has been housebound since 2008 and now works five hours per week from home as an Education Researcher at the University of Edinburgh…read more.

 

Media coverage

Our project has been featured in the following media:

The London School of Economics and Political Science – Improving disabled people’s employment and pay: changing patterns of campaigning and influencing

Independent Living – Are people with chronic illness marginalised?

Ekklesia – Why I launched the Chronic Illness Inclusion Project

Shaping Our Lives – On Spoons and Spoonies (page 8)

BBC ‘Ouch: Disability Talk’ – Rationing energy – and other chronic illness life hacks (podcast)

Disability News Service – Project aims for inclusion and a collective voice for ‘spoonies’

This Post Has 17 Comments

  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.

    2. Looks like the NHS page is a bit rubbish.
      The defining statement at the top is “A long term PHYSICAL health condition” but the list includes “certain MENTAL disorders”…

  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!

  5. Audio started playing anytime I opened this blog, so frustrating!

    1. Sorry, I will get this checked out!

  6. Perhaps the question of not being able to get a diagnosis despite everything needs to be considered. You know something isn’t right, your not a fraud but nobody seems to be listening. An example being people who already have a physical impairment, but also experience struggles with fatigue. The type of fatigue that is not just due to the exertion of daily life, but one where you struggle to function in a hazy fog, sometimes you feel like your head is blown. Suddenly from know where you’re emotional and your body aches. Your zapped with what feels like a bug type virus for a few days feeling all over rubbish. Then suddenly (as it often starts) it lifts and you think here we go again – life!

  7. I think there needs to be some way of communication with the project by phone, maybe through the centre for welfare reform, a number of sick people have cognitive issues and while can speak on the phone, cannot always write, so can’t contribute, etc.

    1. Thanks John, I’m sorry you can’t contribute as much as you’d like due to cognitive problems. I totally understand: I was once unable to read, listen to the radio, watch TV or sign my own name due to cognitive issues from very severe ME. We are aware that this project sadly can’t reach those who have profound cognitive impairment from chronic illness. We are just 2 researchers with significant cognitive limitations of our own which restrict our research methods. Unfortunately we just don’t have the capacity to conduct interviews by phone at present. Perhaps in future, this will be possible. Please know you’re not invisible. Best wishes, Catherine.

  8. Hi I have just completed your survey and am concerned that it may not be suitable for those with visual impairment. In multiple places the text was very faint and hard to read even without major visual issues.
    I used Firefox on Win10 the contact us page has an issue with recaptcha blocking me from messaging via that.
    although I do not fit into your definition of chronic illness, as I do not suffer majorly with fatigue. Even though the FND community often class itself as having a chronic illness/condition. Although it seems to be more a grouping of people with disparate symptoms with various effects that affect almost every sufferer differently [my own opinion that some ‘experts’ have stated previously but that others vociferously disagree with]. On top of that we have a multitude of people of primarily neurological/physical origin mixed in with sufferers of primarily neurological/psychological/psychiatric origin [again my own opinion based on the expert evidence of some ‘experts’ but totally poo poed by others, and there are many sufferers who believe the latter as that’s what they’ve been told]. Once ‘diagnosed’ as having a condition of unknown origin – it is standard policy to park us with little medical input/investigation [ as per international guidelines]. We are the remnant of the group that once included people with epilepsy,ME,CFS,MS etc before those conditions were identified.

    1. Thanks Dave, the diagnosis of FND is definitely relevant to our research, please do take the survey if you can. I’m sorry about difficulty reading the survey text. Our limited budget constrains us to use standard surveymonkey software which I was told is accessible to use with a screen reader for people with visual impairment, but it’s clearly far from perfect.

  9. Your project is “aiming to develop representation and voice for people with energy-limiting chronic illness” but I felt the survey tried to get me to focus my “voice” on areas that weren’t necessarily what was important to me.

    e.g. Once of the biggest issues I face is the stigma attached to my ADHD diagnosis. The name of the condition is nonsense and comes from a time when the medical profession thought it was a behaviour disorder.

    Since deciding it’s a neurodevelopmental disorder, they are now using it as an umbrella term to cover people who suffer from “executive function” issues connected to illness/injury.

    Like many people with an ADHD diagnosis, I don’t have attention-deficit or hyperactivity – the two symptoms mentioned in the name.

    Renaming the condition to something more suitable could be a game-changer. But there wasn’t an “other” box to add in my own campaigning needs.

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