Mo Stewart responds to “Reclaiming Chronic Illness” discussion paper

Introduction

Congratulations to all involved with this very significant and relevant project.

I note with interest the purpose of the CIIP discussion paper, and I would be most interested to learn if it is ever discussed by any future ‘policy makers’.

As a former healthcare professional I can advise that when I was working the term ‘chronic illness’ was used as medical terminology, and it was not limited to any specific group of people, or necessarily to those whose condition limited their strength and energy such as Chronic Fatigue Syndrome (CFS), which was not an identified diagnosis when I was working.

The term ‘chronic illness’ was used in medicine to identify anyone, like myself, whose illness  was profound, permanent, could not improve and was likely to deteriorate over time. I last worked in healthcare in 1984 but, as far as I now know, the terminology’s use in the medical sector hasn’t changed. ‘Long term health condition’ is now also in common use, but has a different interpretation in medicine to ‘chronic illness’ and tends to relate to long- term health conditions which are well controlled by medication, such as diabetes.

The use of the ‘chronic illness’ terminology has been adopted by those who suffer with ‘stamina impairment’ as demonstrated in the CIIP discussion paper. I can identify with feeling outside of the Disabled People’s Movement (DPM) and organisations (DPO) who seem incapable of coming together and speaking with one voice. They are not very different to the charities, who also claim to be working on behalf of disabled people, but who tend to ‘cherry-pick’ research evidence, not unlike the Department for Work and Pensions (DWP).

I am very pleased the CIIP discussion paper has identified with the social oppression which is a common experience of chronically ill and profoundly disabled people, and the distinction between illnesses that are ‘hidden‘ and have been disregarded or minimalised over the years.

I would alert you to the ongoing high risk of continually disregarding ‘medical diagnostic labels’ (p5) as often cited and constantly rejected by the disabled community, and we are all very familiar with the DPOs’ devotion to the social model of disability. However, as my research has demonstrated, disregarding diagnosis is how the DWP tyranny has manifested itself when using the Waddell & Aylward biopsychosocial (BPS) model for all DWP assessments, which is demonstrated to be dangerous by disregarding medical diagnosis and prognosis, and which was always guaranteed to kill many.

The DWP are successfully playing us at our own game, given that the disabled community claim to object to being defined by ‘medical diagnostic labels’ (p5) but, without them, the DWP are free to terrorise those in greatest need by adopting the fatally flawed, dangerous and totally discredited Waddell and Aylward BPS assessment model.

The human consequences of disregarding diagnosis for the Work Capability Assessment (WCA) is creating, on average, over 80 deaths per month, and is something I’ve been writing about for almost ten years. It’s a great pity the DPOs continue to dismiss the research and never cite the very detailed evidence.

‘The social model so strongly disowns individual and medical approaches, that it risks implying that impairment is not a problem. Whereas other socio-political accounts of disability have developed the important insight that people with impairment are disabled by society as well as their bodies, the social model suggests that people are disabled by society not by their bodies.’

The Social Model of Disability. Tom Shakespeare, 2010

Disregarding diagnosis is also used by the DWP for the assessments of Personal Independence Payment (PIP) and, most recently, for Universal Credit which is slowly being rolled out across the UK, and is guaranteed to cause more preventable harm to those least able to protest.

Chapter 2

I would alert you to the fact that ‘chronic illness’ as a medical diagnostic term doesn’t necessarily involve any form of physical pain, which is not to be confused with clinical exhaustion, and that ‘pain’ is open to a vast amount of interpretation (p9).

 

‘For the purposes of our research, I have adopted a working hypothesis that chronic illness refers to a health condition involving significant energy limitation through physiological dysfunction that produces the experiences labelled by medicine as ‘fatigue’, ‘pain’ and ‘malaise’. In other words, chronic illness entails significant impairment of stamina.’ (p9)

** I should advise that I personally don’t use the social media phenomena that’s swept the world. I don’t have the time to communicate via social media when dealing with volumes of email contacts, as well as devoting most of my available time to my own research. Therefore, I am duty bound to freely admit that I have no experience of opinions expressed online via social media (p8), and I can only respond to the CIIP discussion paper from my own knowledge, experience and expertise, which is not informed via social media contacts.

Some of the physical limitations described (p9) are common factors with many forms of permanent and profound illness and disability that are unrelated to ‘stamina impairment’, and most people with the more severe illnesses and physical limitations are required to ration their physical activities throughout the day, not least due to the extra time needed to complete the same relatively simple tasks as conducted by the able bodied community.

[Speaking personally, I am physically unable to stand or walk for more than ten minutes before I lose all feeling in my lower limbs and I fall to the ground. My limitations are due to the physical restrictions of my spine in particular, and the extremes of physical pain I can experience, together with the expectation that I may well fall if required to stand for too long.  This physical limitation means that usually, when going outside the home, it is necessary for me to have a care worker with me, and the use of a wheelchair which is an unpleasant but necessary piece of equipment to permit me any form of social involvement. Using a wheelchair is especially unpleasant as being pushed over uneven ground or cobble stones, for example, will vibrate through the wheelchair and cause additional extremes of physical pain. To avoid this, if going to any public arena for a significant amount of time, it is much better to hire an electric buggy, which negates this problem but is not cost effective for general use. The physical effort of managing my condition on a daily basis, together with conducting the research, can and does lead to clinical exhaustion at times, but it does vary and is not to the extremes demonstrated by CFS.]

It should also be noted that the listed most common conditions (p10) which identify with ‘chronic illness’ do not represent more than a small percentage of the identified 2.4 million sick and disabled people who are dependent upon social security benefits for their financial and physical survival when unfit to work; and the identified recruitment survey had a relatively small number of respondents -155 (p10).

Assumptions to the answers given to some of the questions are not confirmed by the published answers.  For example, the question ‘Do your condition(s) or illness(es) reduce your ability to carry out day-to-day activities? (p11) concluded that:

‘This further suggests that people self-describing as having ‘chronic illness’ are a subset of people with long term health conditions who have significant activity restriction due to stamina impairment’. (p11)

From the reported answers to the published question, there seems to have been an assumption that the reduction of capacity to carry out day-to-day activities is due to ‘stamina impairment’, but that hasn’t been established from the limitations of the published answers to the question. For example, I would answer ‘Yes, a lot’ to such a question, which is related to my physical limitations and extremes of pain, and is not necessarily related to stamina.

‘‘Chronic illness’ is a self-ascribed identity, emerging spontaneously from online discourse and practices. It is not a label derived from scientific medicine or government administration. In this sense, the incidence and prevalence of stamina impairment remains hidden from policy formulations relating to disabled people. Its closest synonym, ‘long term health condition’, includes conditions that may not cause significant impairment or activity restriction if they are managed through pharmaceutical or behavioural intervention’. (p11)

The above statement demonstrates that the use of the terminology ‘chronic illness’ in clinical medicine is unknown to the researchers, and is presumed to have been derived from online contact with a group of self-ascribed chronically ill people.

Chapter 3

The comments from the focus group are noted but there is a problem in that ‘chronic illness’ is identified as the cause of social isolation in the disabled community:  “…the chronic illness community tend to be socially isolated because stamina impairment renders them effectively housebound and unable to access work, leisure or social activities.’ (p14) I would suggest that caution is needed when making such a statement. Again, speaking from my personal experience, I am also ‘effectively housebound’ and my social life is limited to one evening out per month, which is very well orchestrated and cannot be guaranteed depending entirely on my physical status on the day. It is unrelated to ‘stamina impairment’ per se, and it is this assumption that runs throughout the discussion paper (p15) which has attracted people with identified ‘chronic illness’ but, equally, can also apply to other long-term sick and disabled people who do not identify with having a ‘stamina impairment.’

The difficulty is that ‘stamina impairment’ is not the only reason why so many of these identified problems exist, and this is a possible limitation of the discussion paper because the identified problems listed are also experienced by other sick and disabled people who do not necessarily identify with having  ‘stamina impairment’ or a ‘chronic illness’. The 1996 Crow quote (p15), as with many comments reported to be relevant to people living with a ‘chronic illness’, also applies to others with a long-term and significant illness or disability and this would seem to be the possible limitations of the project. The identified evidence presented in the discussion paper is valuable and significant. However, the limitations of the evidence is that the identified and highlighted problems are not exclusive to the people in the ‘chronic illness’ category of sickness and disability as identified by the discussion group.

Surely the ‘crucial question’ to explore is for people who are ‘wholly or largely housebound’ by illness, and not restricted to those living with ‘stamina impairment’? (p15). I am writing from an identified disadvantage as I do not, and would not, spend time on social media discussing my health, illness or social isolation created by illness and disability. The comments identified (p16) by the use of insensitive people and ‘inadequate language’ is experienced by many of us, and was something greatly increased by the coalition government. Iain Duncan Smith MP spent six years demonising sick and disabled people when Secretary of State for Work and Pensions. This, coincidentally, saw prosecuted disability hate crimes increase by 213% during the coalition government’s term in office. This well reported commentary has, I suggest, negatively impacted on society and the growing lack of public support for anyone who’s too ill to work.

The negative impact is clearly demonstrated in the CIIP discussion paper (p17).

‘ ‘I’m too tired too, but I have to keep going’ is another common refrain made to people with chronic illness. With it comes the implication that activity restriction is a matter of choice that results from an exaggerated behavioural response to common health problems, unconscious malingering, or simple laziness, rather than a consequence of physiological impairment. It is always experienced as a negative moral judgement on the part of the speaker.’ (p17)

The frustration of the writer is evident, no doubt from years of experience from apparently insensitive people making a judgement on a chronically ill person. However, it should not be overlooked that the general public will not comprehend ‘Chronic Fatigue Syndrome’ and are likely to misunderstand, and they have been indoctrinated for several years by relentless lies by successive DWP Ministers; which were always guaranteed to be widely reported by the influential tabloid press and which are known to have negatively impacted on public opinion.

I would personally question the unexpected statement that people with Rheumatoid Arthritis (RA) are identified as reporting that ‘fatigue and malaise are the most debilitating aspect of their condition’ (p17). I, personally, set up the Camberley branch of Arthritis Care many years ago when still living in Surrey and it is a support group I ran for seven years.  At no time did anyone diagnosed with RA claim that ‘fatigue and malaise’  were the most debilitating aspect of their condition as they all related to extensive, and often relentless, chronic pain as their biggest burden; together with the physical limitations of joints that don’t work to their full capacity. The injustices identified on pages 18 and 19 have been common in medicine for a long time and are, I suggest, more to do with the fact that patients are not considered to be objective when describing their own health conditions.

Chapter 4

As time passes, the limitations of the social model of disability are identified, with the need to include impairment for consideration of the identified needs of the long-term sick and disabled community. The main restrictions to the claimed identity of ‘chronic illness’ in this discussion paper is the fact that it isn’t linked to or restricted by any one diagnosed condition.

‘…and an acknowledgement of other impairment-specific movements for social change, chronic illness has, by and large, not been theorised as a form of impairment with its own attendant experience of disability and disabalism.’ (p23)

Therefore, many people with long-term illnesses, especially conditions that vary, can at some time experience ‘stamina limitation’ which will be identified as part of their ongoing health condition and limitations, and will not necessarily be identified as a separate condition or phenomena because most people in such a position will already be identified in medical notes as being ‘chronically ill’.

The difficulty remains that ‘chronic illness’ is an identified medical terminology which has been adopted by a specific group of chronically ill people in the hope of highlighting their identified needs.

However, it is my contention that this remains very difficult to achieve because the terminology of ‘chronic illness’ is used in medical terminology, and is therefore associated with diagnostics in the medical world. Also, given the vast array of profound and serious illnesses, it seems reasonable to expect that ‘stamina limitation’ can impact on many people without notice, and may or may not become a permanent experience depending on health deterioration and well-being.

For the disabled community to explore the possibility of ‘chronic illness’ when identified as ‘stamina limitation’ may find objections from within the medical community. If a permanent ‘stamina limitation’ is identified, as linked with CFS for example, there is no reason why ‘chronic illness’ cannot be included as part of the descriptive of physical limitations for administration purposes, such as disability benefit paperwork. I have described myself as being ‘chronically ill’ on official paperwork for a long time. However, my use is as demonstrated by the medical use of the descriptive, and it will depend on who reads the paperwork as to the understanding of the terminology and its implications for those concerned. I very much doubt that DWP staff will comprehend the significance of the terminology.

Chapter 5

Science and research are (finally) beginning to identify patients with CFS as having an impairment of cellular bioenergetics (p9).  Eventually, CFS will be a stand-alone diagnosis with implied stamina limitation in the definition and diagnosis. Other conditions who identify with ‘stamina limitation’ are unlikely to have the same identified cellular transfer fault. The definition of ‘chronic illness’ as identified in medical diagnostics identifies with the physical and cognitive limitations described by this study (p 25).

‘Therefore, chronic illness is distinct from impairment, rather it involves impairment that affects global function – both physical and cognitive – and is fluctuating and cumulative in nature, rather than localised to a specific limb or organ and stable.’ (p25)

The conclusion that the research project intends to ‘fully explore the nature of social oppression faced by people with chronic illness and produce an agenda for social change’ (p25) appears to be starting from the presumption that ‘chronic illness’ as identified in the discussion paper is a specific entity. However, from my experience, I would advise caution. Chronic illness as used by medical diagnostics is justified by diagnosis and, therefore, can already be used as a descriptive for many health conditions. The term ‘chronic illness’ in medical terminology depicts a long-term and often permanent health problem, as opposed to physically disabled people such as, for example, a paraplegic, who is otherwise fit and well.

I suggest that the social isolation identified by the study group is in common with the experiences of many chronically ill and disabled people, especially in the disability benefit caseload. I further suggest that the social isolation identified by the study group isn’t related to the fact that they suffer with identified ‘stamina limitation’ or ‘chronic illness’ as described by the discussion paper. It is because they form part of the much larger disabled community, whose social isolation is a given because they are physically unable to mix with society in any significant way and their physical limitations makes them ‘effectively housebound’ (p14), regardless of diagnosis or ‘stamina limitation’.

Mo Stewart

Independent Disability Studies Researcher

13th September, 2018

©Mo Stewart, 2018

 

** Original report first shared online on 6th August 2018

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One thought on “Mo Stewart responds to “Reclaiming Chronic Illness” discussion paper


  1. I haven’t re read Catherine’s paper to read Mo’s comments, so I don’t remember clearly which information is supplied in the paper, but I feel like there’s a misunderstanding of the point of our project. It isn’t a problem for CIIP that many of our experiences are the same as other Disabled people- this is a major aspect of our point that we wish to be seen as a legitimate part of the Disability community and want to be heard within a community we often feel excluded from. Although the Inclusion bit of the Chronic Illness Inclusion Project partly refers to general Society, it also refers to Disability. We don’t see ourselves as a break away group, we want to be seen as a grouping within the larger group.

    The Discussion Paper was written early in the project in order to provoke debate and help move our ideas forward, so it is good to get detailed feedback. The Discussion Paper doesn’t report back on the qualitative focus group or large questionnaire, as these came later and haven’t yet been written up (from Mo’s reply this seems to be a misunderstanding). Some of our ideas have already moved on a little. We’ve been aware since the start of the project that the technical meaning of ‘chronic illness’ is much broader than the way it is used in practice online. A major focus of discussion has been our attempt to find a better term. We are currently tending to use the term Energy Limiting Chronic Illness, though this may change again depending on participants’ ideas.

    If the paper had used a specific term such as Energy Limiting Chronic Illness would many of Mo’s concerns be resolved? I think this clearly communicates we mean a specific group of people with a type of condition. We don’t mean everyone whose impairment results in some reduced stamina as a knock on effect, we mean people whose energy limitation is at the very core of the nature of their impairment and why they are disabled. The Spoonie thing captures this, but for people who missed the eruption of Spoonie identity on social media this would be hard to understand. It is a similar umbrella category to say Mental Health.

    I’d say if “we” are people who have Energy Limiting Chronic Illness then it is defined in that term, this doesn’t seem confusing. The justification for this is a shared type of impairment. We do also experience similar oppression (eg unreliable witness of our own body), but I don’t think we have to define the edges of “us” as an entity by this. If it is meaningful to us to unify under the umbrella of the nature of our impairment that should be acceptable in itself.

    I’m very interested in Mo’s observations about diagnosis though. Seeing as we are challenging the boundaries/assumptions of the Social Model anyway, we’re not treating this as sacred although we are positive about the legacy of the Social Model, it might be interesting to explore if people would actually be more comfortable (not less) with referencing certain diagnoses in terms of defining ourselves? We’d want to do this in a way which doesn’t exclude rare diseases though (and I don’t know Survey results yet) but eg ‘Energy Limiting Chronic Illness includes diagnoses such as fibromyalgia, ME, MS, rheumatoid arthritis, lupus, and other similar ongoing conditions in which a substantially reduced energy budget for the activities of daily living is core to the nature of the impairment experienced’.

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