Publications

Reclaiming “Chronic illness”

Foreword by Dr Simon Duffy (excerpt)

I must admit that I had no understanding of the reality, severity and widespread nature of chronic illness until very recently. It was only as we began our own efforts to combat the UK austerity programme, which began in 2010, that we discovered that many of those people we were fighting beside were people with a chronic illness. And, it was only by listening to their experiences that I understood that there were layers of injustice that I had never truly appreciated.

Summary

This discussion paper presents the ideas and assumptions behind the Chronic Illness Inclusion Project (CIIP), part of the DRILL programme of disability research.

My own immersion in online networks of activism and solidarity lead me to give a particular slant to the term ‘chronic illness’, a meaning which is perhaps not universally shared. For me and fellow researchers in the CIIP, having chronic illness means being a ‘spoonie’, that is, having very limited units of energy that must be carefully rationed.

A key aim of the CIIP is to translate our experience of chronic illness into the social model of disability, beginning with the distinction between impairment and disability. In this paper, I argue that, ‘chronic illness’ is a self-ascribed identity which implies both a distinctive form of impairment (in our case, bodily malfunction) and a shared experience of disability or disablism (social oppression).

Chapter 2 of this paper outlines the concept of limited energy and systemic impairment and proposes the term ‘stamina impairment’ to capture the lived experience of chronic illness.

Chapter 3 suggests that the oppression faced by people who identify as having chronic illness is based on the invisibility of impairment and the unequal relationship between lived experience of our bodies and scientific medical knowledge on illness and disease.

Chapter 4 suggests that chronic illness is a hidden impairment group on the margins of the UK Disabled People’s Movement (DPM) and unaccounted for in social and public policy. It explores the historical and ideological reasons for this marginalisation and proposes that exploring a social model of chronic illness through emancipatory research will help to forge a closer and mutually-beneficial alliance between the DPM and the online chronic illness communities, as well as build a platform for social, political and cultural change based, not on medical diagnostic labels, but on shared experiences, needs and aspirations.

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25 thoughts on “Publications


  1. Please add a comment here to share your thoughts on this paper:


    1. I think there is significant difference between chronic illness and as mentioned in this paper to someone whom has a disability in whereby it is localised and stable. I’ve tried to explain this concept to individuals informing them that their are people with disabilities whom do not feel ill or unwell and although may face challenges can still participate. I don’t like the word fatigue as there appears to many misconceptions or misunderstandings with many thinking or associating the word with tiredness where as I prefer the word exhaustion or liken to depleted energy levels as in my case. I would also prefer to be seen as someone whom is chronically ill rather than disabled due to my illness being at times very debilitating due to the effects of being chronically ill. I don’t see myself as being disabled. I also feel that being chronically ill with a defined disease would explain why the illness for most part is invisible. I personally feel that more is needed to educate the public on the difference between chronic illness and disability and that there should be different definitions for the two in order to educate the public.


      1. Thanks Jo. I agree with you about the word “fatigue” being very misleading, and I agree that the public needs educating about the experience of invisible and energy-limiting chronic illness and how participation is often not possible, even with adaptations and adjustments in place. However, I personally don’t think it’s helpful to say that chronic illness and disability are two separate things. I assume you are “disabled” in the legal sense, that is, having a long term condition that significantly restricts your day to day life? Identifying as “disabled” means you have a right to be treated equally to non-disabled people in many circumstances, and to access certain kinds of support.

        This is why we are exploring a language that better explains “fatigue” and exhaustion to the public. We’re trying out the term “stamina impairment” to convey that fatigue is a TYPE of disability or impairment, just like visual impairment, or learning disability. If we can get better understanding and awareness we can fight for better policies and services to improve our lives. I hope that makes sense.


    2. Hello Catherine,

      Thank you! It’s so exciting to read a paper that deliberately sets out to politicise our experience. I can only speak from my sporadic experience of the ME community during my 23 years of illness, but I have felt the momentum building towards this moment over the last few years. As the biomedical research finally begins to bear at least the suggestions of fruit, it feels essential that we continue to work to raise the political profile of chronic illness, and establish at least a mutually supportive relationship with the DPM in order to challenge the particular kinds of exclusion that we face.

      I also want to thank you for such a clear, well-structured, and articulate report – not an easy feat in so few pages, and certainly not when you have a cognitive fog to contend with.

      I’ll begin with my only negative response, which is to admit that I can’t bear the term “spoonie”. I fully respect why people use it, and their right to use it to refer to themselves and each other. To my ears, however, I’m afraid it is cutesy and infantilising, as well as misleading about the multi-system nature of chronic illness, and I would be opposed to the term being used in this political project on that basis. The idea of hearing someone refer to “spoonies” during a parliamentary debate fills me with horror…

      But on to the positives. I’m very taken with your argument for understanding ‘chronic illness’ as ‘both a specific form of impairment and a virtual social movement of solidarity, peer support and resistance against oppression.’ To my mind, this is more of an aspirational definition than a reflection of current reality for all those with chronic illness. It’s one that I find personally appealing, but which I can also imagine some people being legitimately uncomfortable with. From the stats you cite, there’s clearly much work to be done to understand how this might sit with people with different types of illnesses. Arthritis and MS being less closely associated with the terms you cite, for example – is that because those communities have more medically and politically acceptable diagnoses than people with ME or Lyme, for example, and thus their activism is channelled towards different ends? I suppose I’d be interested to think about who is at risk of being excluded by this definition of chronic illness, while at the same time offering my support for it.

      I’m also struck by the approach to impairment, and how it might also work to legitimise illnesses to those who have them – because we all know the damage that years of medical disbelief and neglect can do to one’s sense of self and self-belief. I also like it for implicating the global systemic nature of our illnesses, as you put it, and for offering a potential bridge to those with other forms of disability from whose political experience we can learn, and whose support and solidarity we aim to harness.

      I share Colin’s (below) hesitation about stamina impairment, however, for its connotations of the dreaded ‘resilience’ so beloved of the neoliberal approach to health and illness. And because as he rightly says, we are all possessed of extraordinary depths of stamina that well folks simply don’t have to tap in order to continue living. That said, ‘energy-impairment’ feels, again, rather simplifying of a very complex problem; it fails to convey the severity, which perhaps stamina-impairment does a better job of. But perhaps the descriptor doesn’t need to reflect lived experience as much as offer a suitably broad category: ‘sense impairment’ doesn’t tell you anything about the experience of being blind, for example. I’m not being very helpful, but I look forward to hearing about the outcome of the next round of discussions.

      The question about what inclusion and participation would look like for those not physically present (p15) is something I think about a lot, and I’m hugely supportive of your proposal to tackle this.

      Probably enough stream of consciousness from me for now, but I really look forward to hearing about the next steps. And thank you again for approaching the immensely complex challenge of redressing social and epistemological injustice and their interrelatedness in such an open yet rigorous manner. We all stand to benefit.


  2. SOCIAL MODEL
    From a social perspective, as someone who is mostly bedbound, I could not physically or emotionally cope with more social activity than interacting via facebook and very occasionally seeing friends in the flesh. What I am saying is that I should never be able to fully participate in society. I can however participate to my fullest ability, e.g. via SM, blogging, occasional visits. The “Social Model” would thus have to be amended were that to be used as the basis for any prospective movement.
    TERMINOLOGY
    My physio prefers to call mine & others’ conditions ‘persistent’ rather than chronic. Chronic has too many connotations as far as he is concerned. Likewise, I am concerned about being labelled “stamina-impaired” for I am resilient, tenacious, and I endure my infirmities & impairments with fortitude and perseverence. What I am trying to say, is that the word stamina also has multiple connotations. Would “energy-impaired” work?
    I also abhor the use of the word fatigue. Personally, I experience exhaustion, sometimes to teh point of collapse. I do not so much suffer PEM but post-exertional exhaustion.
    DEMANDS
    We need health services to incorporate the care of those with chronic illness. Those who are housebound very often cannot access health services, e.g. physiotherapy, psychotherapy and so on, as we cannot reliably or at all attend appointments. More services need to be peripatetic. And GPs (I know so hard-pressed) really do need to make regular (at least once per year?) visits to the housebound. Altho’ sending appropriately trained nurses could make visits inbetween times.
    We also need a joined up approach from health services with social care services. Indeed, we need carer services that actually work for us and our often limited lifestyles.
    I was struck when visiting Sweden how much the State there supports disabled individuals and I keep meaning to look deeper into the matter. The main point is that they do not expect family members to give up their careers etc. to care for disabled relatives. In so doing they create employment for carers, e.g. amongst university students (thus broadening the latters’ social awareness).


    1. Thanks Colin,
      In the focus group we had recently, everyone agreed that the term “fatigue” was terrible, and like you, not everyone liked the term “stamina impairment”. Energy impairment is a good alternative which we’ll include as a possible descriptive term in our forthcoming survey.
      I totally agree that healthcare services need to be much more accessible to people who are housebound due to energy limitation, and of course, social care services in the UK are currently failing all disabled people due to devastating budget cuts.


  3. Reading the term “stamina impaired” in your article was a lightbulb moment for me!
    I was diagnosed autoimmune 6 years ago, but I’ve had symptoms for over 40 years. One of my biggest fears, in all that time, has been to avoid being labelled “lazy” – so shameful, it classifies as one of the seven deadly sins.

    I’m no more “sinful” than most other people, but I’ve never had a lot of stamina and I tire easily. One of the hardest things at work has been managing my time and workload to get everything done while battling fatigue. Its so often been a losing battle and I then I criticised myself for not being able to keep up with normal people. The concept of work-life balance was a joke.

    “Stamina impaired” is a perfect description and I can use it to ask for reasonable adjustments to enable me to keep working. I no longer need to beat myself up about my apparent laziness. The removal of that added pressure is such a relief.

    Thank You!


    1. Thank you Alison,
      I think it’s so important to have a term we can use to explain our lack of functional capacity when it’s invisible, fluctuating and hard for even medics to grasp, so that we can then claim the rights and supports that all disabled people are entitled to. Stamina impairment doesn’t do it for everyone but I’m glad you find it fits, and most of all, empowers you.


  4. What a welcome paper!

    I work for a pan-impairment Deaf and Disabled People’s Organisation (DDPO) that has always seen those across the spectrum of hidden impairments as much a part of the Disabled people’s movement as any other Disabled person. However, as you and those commenting here illustrate, to move forward together we need:
    – people with persistent and exhausting impairments to identify as Disabled people; and
    Disabled people’s organisations need to do more to welcome these Disabled people.

    However, I also think we need more than that.

    1. Most DDPOs are very, very small (micro) organisations, and have seen their funding cut, more than most, over the past 10+years. This means they struggle to fund their existing commitments, never mind develop new ones. Consequently, we need more funding to be more inclusive.

    2. Too few disability organisations are for ALL Deaf and Disabled people; the majority work in condition-specific silos. So, we need more pan-impairment organisations.

    3. The technology to be fully inclusive of people ‘attending’ in their own homes, is eye-wateringly expensive and not very portable – an important factor for organisations that rarely own their own meeting space(s). So we need access to affordable technology.

    My organisation, Bristol Disability Equality Forum, runs a specific Hidden Impairments group where we support each other and address the specific issues faced by this group of Disabled people. It was almost instantly well attended but, to be able to include multiple people attending virtually, we need to have a high quality video-conferencing system that can accommodate those who are Deaf/deafened and those who have a vision-impairment. Such a set up costs thousands of pounds that we don’t have.

    So, Yes, DDPOs need to do more, but they also need the resources required to be genuinely inclusive of all.


    1. Thanks for your support Laura. I agree on how hard it is to find a medium where all impairment groups can participate on a level playing field to do the really important pan-disability work. Some of us use the internet a lot because we can’t attend events in person, but that creates barriers for others for whom these technologies are inaccessible or poorly accessible. As you say, the costs of funding genuine access and inclusion for all impairment groups are prohibitive for most DDPOs. I’m sure this is a big reason for the silos and communication barriers you mention.


  5. Hello. First of all, I’m old enough to remember the 1940s and the term ‘spoonies’ is redolent of the nicknames given to groups of people on the fringes of, or excluded from society, e.g. ‘homers,’ ‘squatters’ and ‘loonies.’ I don’t think it right to stereotype people in this way and, IMHO I think it could be discriminatory.

    Secondly, since the early 2000s I have carried out voluntary work for an organisation initially called the ‘Norfolk Coalition of Disabled People’ and now called ‘Equal Lives.’ (I am not speaking for them here – it is a personal statement). Very early on, we decided that putting people into separate and special silos, i.e. mental illness, physical disability, sensory disability, learning disabilty, chronic illness, etc was wrong and we continue to practice pan-disability to date. We closely adhere to the social model of disability and campaign against the medical model.


    1. Hi Mike, thanks for your comments. The term “spoonie” is not a great metaphor and is disliked by many for seeming childish and perhaps marginalising. However, many people do use it to describe themselves, like a badge of identity, and I think this makes it different from a discriminatory label imposed by others. If you look up “spoon theory”, it started when someone wrote a blog describing their lived experience of chronic illness and for thousands of people this was a lightbulb moment because they had never heard or read their reality described so accurately before.

      As for the issue of whether to divide people into silos of impairment: I absolutely agree on the importance of pan-disability work, especially in these times of austerity where all disabled people’s rights are being eroded. However, I think there has been a problem with not recognising or accepting chronic illness as a form of impairment. And following on from that, the kinds of oppression that people with chronic illness face have not been recognised or understood as a form of disablism. That’s why I think the work we’re doing to articulate the experience of chronic illness is necessary, while the ultimate goal is not to form a separatist movement but to unite more effectively as disabled people.


  6. As someone who has a 30th anniversary looming in January of contracting Myalgic Encephalomyelitis and Fibromyalgia (I give them their full names so not to trivialise their devestation on my body) I haven’t the Ooomph! to write a tome of comments.
    Instead, I will write about one action – the pain, fatigue and exhaustion of taking a shower which cannot be referred to as a ‘daily’ shower as I will be in pain and bed-bound without any energy for at least THREE days after this ordeal. I take two Tramadol before my shower as I won’t have the mindfulness nor energy to do take painkillers afterwards. I don’t dry myself with a towel as I do not have an extra ounce of energy. In great pain and with diminished oxygen, I put on a dressing gown so it will dry my body in bed (saving me the effort) and I stumble into bed, utterly exhausted. I huddle under a duvet and throw, (yes, even in this summer heatwave) and have a scarf wrapped around my head keeping my ears warm and covering my eyes from the light. I then surrender to ‘the Seige’ where I am attacked with shivering and I moan aloud in discomfort until, blissfully, sleep arrives. I await for the fever to break. In a particularly bad ‘Seige’, I feel as though I am lying on top of a boat’s engine, the shivering wracks my entire body and brain.
    There is no way that I can shower AND shampoo my hair at the same time. My hair is air-dried as I do not have the energy to run a comb through my hair (it would hurt) let alone hold a hairdryer to my head for ten minutes.
    Knowing the extent of how taking a shower will devastate me and its aftereffects, I postpone it. Days. Weeks. Months.
    A ‘basic’ function of hygiene exhausts me totally.
    If I have a medical examination, the shower-day must be calculated beforehand as to when it can be done. A shower and an outing !Cannot! be done on the same day! The shower is the sole action of that day. Neither food nor drink will be prepared or taken until ‘the Seige’ is over. The duration is an Unknown and it Varies.
    My illness is consistent in its inconsistency!
    This is my experience as a single person living alone, without help.


    1. Mary, you’ve described much more vividly than I could what stamina impairment feels like for many people, and why the term “fatigue” is so inadequate. Thank you.


      1. Also, I’ve provided you with a perfect example of my cognitive problems LOL
        I am a perfectionist for grammar and spelling yet by the time I typed, edited and reviewed it, my mind was mush and I was exhausted. And fell asleep. I lie in bed and use my mobile for emails. I don’t talk on the ‘phone and I switch off the mobile except for a few minutes. I have no control over my illnesses but I do claw back some control by using my mobile a) limiting the interruptions while I’m resting and b) communicating in writing so that I can edit words and have a copy of correspondence. In telephone conversations, I use incorrect words (“It’s cold in this heat wave, isn’t it?”), forget what I want to say, digress, talk over the other person as I need to say the thought while it’s in my mind … and yawn constantly.
        Because of poor short-term memory, I have limited recollection of the spoken conversation. Yet I can remember things from forty years ago.
        Sound familiar? (grin)


  7. Interesting comments here. As a disabled person, I would welcome this idea, because many of us also experience extreme tiredness linked to the physical and sensory efforts we have to make. All of us would benefit from a much more supportive society in which it would be easier to get the help we need, when we need it.


  8. This pretty much mirrors our experience in Ireland of managing a disability without the proper supports in place from the top down there is little education or validation of the pain and debilitating weakness, fatigue and myriad of symptoms that make you sound like a hypochondriac so you eventually stay quiet with a waking deficit energy each morning to survive it’s even more challenging to harness a flickering pilot light into activism. I’m so grateful to you blazing the way for those of us who only come out of the brain fog intermittently to speak trying explain yourself between hypersensitivity that make interacting with devices, lights, sounds, smells and touch impossible to tolerate. There is so much darkness it is so very heartwarming to emerge from the flares and crashes and see such important work being carried out. Thank you!


    1. Thank you Niamh, that is so very heartwarming to hear. Thank you for the effort it takes to respond, much appreciated.


  9. I was so relieved to read your paper, mainly because of the ignorance and stigma I have experienced since the Fibromyalgia I have had at a low level since childhood became full-blown seven years ago and I had to give up my wobbly career in the Third Sector.

    I agree that there needs to be clarity with language relating to ‘fatigue’. I once heard an appalling comedian denigrating people with ‘fatigue’ saying “you re tired? Well everyone’s tired!” Another, claiming that fibromyalgia is “made up” and so on. I would describe the fatigue I experience as profound exhaustion and yes, I agree, it IS an impairment. A massive one. It is the most limiting, dispiriting and depressing thing about my illness. Energy has to be rationed into tiny chunks of activity and planned for extremely carefully- I can not wash my hair and shower on the same day and neither of these can be performed on consecutive days or more than once a week. Pain is there 24/7. It is a struggle to do basic day to day stuff and struggling to do this stuff, even with a caring helpful partner means I can hardly ‘engage with society’.

    I do identify as ‘disabled’ because the illness is so disabling, and I need to feel part of a wider collective of people with the same aims; particularly with regard to the hostile climate around invisible illness created by the Conservatives in their drive to hollow out the Welfare State whatever the human cost. If incurable exhaustion was defined as an impairment, meaning that with regard to the Social Model we would fit the category ‘disabled’as you brilliantly argue, maybe we would get somewhere in terms of Social Security benefits and social care. Together we are so much stronger. Thank you for your work.


  10. I’ve recently been diagnosed with ME and fibromyalgia. I didn’t really understand at first what was happening to my body and quality of life , also in part because I’ve recently had breast cancer treatment and put it down to the after effects of the disease , surgery, drugs and radiation. However instead of starting to recover I was feeling worse as weeks went by , muscle cramps, tingling in my arms/ hands the complete feeling of I can’t face another day like this, and the absolute exhausted state I was finding myself in, like my battery life had run out. I was so worried that the cancer was back I contacted my doctor and found it wasn’t cancer but ME / fibro . I shouldn’t have felt so relieved but I did to know I wasn’t imagining it , that the pains were real, that when I can’t dress myself or wash my hair I wasn’t being lazy, that the deppressed feeling and sleeplessness had genuinely a cause. It’s a relief in one way but my life is changed and the mental stress from not being able to cook, walk my dogs ,just go out the door or look after my family and work and do the normal day to day things I used to enjoy has come to a full stop is soul destroying.


  11. Hi Catherine,

    Can i ask if the focus groups were self selecting, were they a balance of class, economic status, all this will have a bearing on how they answered questions, not all sick people are the same.


    1. Hi John, our focus groups were self-selecting, in that we invited people who had signed up to our mailing list for the Chronic Illness Inclusion Project to apply to participate. Applicants for the focus group took a survey and we selected a sample on the basis of 1. Meeting Equality Act definition of disability 2. representing a range of different health conditions 3. Having a range of severity of impairment due to energy limitation, measured by how easily they could leave their home and also their capacity for cognitive tasks 4. Having a representative gender balance. There are some variables we didn’t select for, such as ethnicity or socio-economic status.


  12. Hi Catherine

    Thankyou so much for this paper! I’ve been think8ng about this for some time and so excited by this project and your work on it. I’d love to get involved in some way.

    My personal experience of ‘coming out’ as a spoonie was of coming to terms with a form of internalised oppression, to do with epistemic injustice (reading Carel gave me an empowered new language for my experience!) Long comfortable as identifying under the soc model as disabled with RA, I pretended my FM diagnosis was no big deal – even masking symptoms from myself – because it was not taken seriously by rheumatologists… (quote: “Frankly I’m not that interested in your chronic pain I’m more concerned about your arthritis medication” !!) It was not util I finally crashed and burnt out from the effort to be ‘well’ 15-20 years in and was forced to give up life as I had known it that I came across others like us and, validated at last, began to acknowledge my own lived experience. The social model had never felt so true!

    Sorry, very long. Would love to help out with this in some way – can offer social policy research experience!


  13. I was diagnosed with Fibomyalgia over 35 years ago when it was still called FIbrositis by many and was considered by many doctors to be “All in your head”. Now though attitudes have changed drastically and I find very few difficulties in getting medical professionals to understand my problems. The only problems lie with my husband and friends who can’t see anything wrong with me so can’t understand why I am so “Dis” abled by it. I do consider myself to be disabled because it prevents me from living a normal life and doing things anyone else could do without difficulty. For me, hoovering the house is more than I can manage in a day before pain and utter exhaustion hit. Going to the shop can put me in bed for days. I don’t have a visible disability even though I now also have severe spinal problems and nerve damage. The government’s definition of Disabled is “You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” That definition certainly applies to anyone with Fibro, ME or similar conditions.


  14. I like the idea of “stamina impairment” or “energy impairment” as a way forward for policies on disabilities due to faitgue/ exhaustion.
    I personally don’t mind claiming the “spoonie” or “disabled” labels either for me it enables empowerment
    I do think more people with stamina/ energy impairment fatigue should push for “fatigue” to carry “sufficient weight” when our needs are assessed (eg by DWP, by employers, by policy makers in general)

    As an extra consideration have charities such as Lupus UK (https://www.lupusuk.org.uk) been encouraged to participate in the inclusion project / ideas

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