A response to Mo Stewart – Part One
Thank you, Mo, for this very thoughtful and stimulating critique of Reclaiming Chronic Illness: an introduction to the Chronic Illness Inclusion Project. Two really important questions you raise stand out to me:
1. As you say, the meaning we attach to the term “chronic illness” in this project does not reference medical definitions but considers chronic illness as a social identity. Does that make it invalid?
2. And in my struggle to develop a more precise language, such as “energy-limiting chronic illness” or “stamina impairment”, am I creating unnecessary divisions and excluding people who share a common cause, especially people with chronic pain conditions? Why can’t we simply unite under the umbrella of disabled people and fight our common oppression, you might ask?
I’m publishing this response because I want to hear from the chronic illness and “spoonie” communities. This is a problem of language and self-identification that we all need to solve. It is not a self-indulgent exercise. It’s about defining who “we” are – if you believe, as I do, that there is a coherent “we”. And that the term “spoonie”, though it has given birth to a social movement, will never get us heard and taken seriously outside social media .
You say that people with stamina impairment are a very small proportion of the disability benefit caseload. Yet when a large UK government survey (see Disability Data Tables) asked disabled people what their main impairment was , the second largest category selected by respondents was “stamina/fatigue/breathing”. And our recent survey of people with self-defined chronic illness has attracted over 2K responses, with very little promotion. That tells me we’re not an insignificant population and that we’re crying out to be heard and represented. This is why we keep on trying to articulate our experience and strengthen our movement.
In this blog post I’m going to tackle the first of these questions:
1. Breaking away from the medical model of chronic illness
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.
We are deliberately using the term “chronic illness” in the way it’s used in social media networks, rather than deferring to clinical definitions of the term. I do agree that it makes it things more difficult for us to organise and advocate for ourselves because these meanings are implicit from everyday online conversations, not set in stone by authorities. The status of people who are, say, “Deaf” or “mental health service users” is less problematic in comparison, and maybe that’s why they are ahead of us in their self-advocacy.
No sociologist has yet studied and defined the online chronic illness community as a social movement. That leaves only our own observations as participants of the way #chronicillness signals a shared world of experience and mobilises people around common agenda, as a basis for our identity. But this is where we have to begin, and why we’re consulting people on what they mean by “chronic illness”.
I believe that rejecting medical classification systems of disease in favour of an identity based on shared experience of impairment is emancipatory. In this sense, it puts us in the tradition of the Disabled People’s Movement and the social model of disability.
I agree with your warning about the need to take account of diagnosis and prognosis in determining work capability. I also agree that DWP has cynically hijacked the social model in order to disregard diagnosis and declare disabled people fit for work when they are not. But I still think when it comes to organizing to promote our shared interests, the lived experience of chronic illness must be taken into account as much as medical diagnosis.
It seems to me that one of the main things that unites people in chronic illness networks is a critical stance towards the status of medical knowledge. This is why I think we are breaking away from a medical model of chronic illness.
My impression is that the term “chronic illness” is falling out of use in clinical and social policy and being replaced by “long term health condition” (LTHC). And the policy focus, as I see it, with LTCHs is all about how to manage them so that you remain an active member of society, with a big emphasis on self-management. The underlying message is that compliant patients – those who take their medicines, don’t smoke, eat well, exercise and practice mindfulness can remain well and active. Of course, self-management and wellbeing are to be encouraged. But the implication is that we #chronicillness folk who don’t significantly improve or recover with prescription drugs or lifestyle changes, are the renegades who can’t, or won’t, self-manage. There are parallels with the biopsychosocial model of Waddell and Aylward, where chronic illness is also a matter of personal responsibility, the choice of adopting the “sick role”.
So defining ourselves as “chronically ill” rather than simply having a LTHC is partly a way of asserting our own reality and experience over medical labels. However you define the chronic illness movement, it is a movement of resistance against these powerful narratives that blame patients or welfare recipients for not recovering or managing. In conversations online, the emphasis is often on how we’re not passive, lazy or disobedient patients but how we’re “warriors”: resilient and active in our determination to live as fully as possible, even from confines of our beds.
Our recent survey results show that the chronic illness community is deeply conflicted when it comes to medicine. Unlike the disabled people who developed the social model of disability, we want research and treatment for our diseases more than anything other form of social change, and many of us with so-called “medically unexplained symptoms” yearn for the clarity and certainty of a diagnosis. Yet, many of us experience the power relations of clinical encounters as deeply oppressive: respondents said the attitudes of healthcare professionals had an even bigger negative impact on them overall than DWP staff!
So part of what unites the chronic illness community is a resistance to medical authority that needs to be studied further. But for now, our deviation from the medical terminology of “chronic illness” is deliberate. It’s about prioritizing lived experience over positivist medical knowledge because that knowledge so often doesn’t acknowledge its weaknesses and its limits. It also divides us into groups according to the interests of its experts, which often seem arbitrary.
When designing the survey, we initially asked people to classify their condition according to disease codes devised by the World Health Organisation. Even the most highly educated respondent said they didn’t know which category lupus, for example, should sit in, and expected to fine a category for “auto-immune disease” which isn’t there.
Perhaps one of the hallmarks of belonging to chronic illness networks online is having diseases that are unmapped or only half-charted by medical science; diseases that are fought over, or straddle several specialisms. Even more common, having not one, but several, diagnoses means we don’t sit comfortably in any one medical specialism (see this account of having multiple sclerosis as well as M.E.)
That isn’t to say most people don’t desperately want medical science to discover more about their condition(s), in the hope of treating them. But in my 30 years of chronic illness, my hope for treatment and cure has gradually been displaced by a longing to explore and overcome my marginalised experiences in common with others. And I’ve found those others often don’t have the same diagnosis as I do, but share a common cause nonetheless.
This has only addressed some of the issues in your critique, and I hope to respond to some of the others very soon.
Thanks again for engaging with our project.