Catherine Hale

If you ask someone living with a debilitating chronic illness if they consider themselves to be disabled, you often get a “yes but, no but” kind of reply.

If you dig deeper, you may find their ambivalence is not so much because they see disability in negative terms. It’s often because they don’t feel entitled to the status of a disabled person.

People with invisible chronic illness typically experience hostility when positioning themselves as disabled – claiming disability benefits or using accessible toilets, for example. Whether from friends, acquaintances or impersonal bureaucracies, the response ranges from subtle expressions of disbelief to overt accusation of faking or attention seeking.

As someone living with chronic illness it took me almost two decades to shake off the pervasive sense of “feeling like a fraud” if I identified as disabled. The research  conducted among my peers with the Chronic Illness Inclusion Project (CIIP) has opened my eyes to how widespread this phenomenon is.

The CIIP is part of the DRILL programme, hosted by the Centre for Welfare Reform. Our aim was to reach out into the digital world of our own chronic illness communities, and bring those voices and experiences into spaces where they are not normally heard.

Our report Energy impairment and disability inclusion suggests that this hostility towards invisible chronic illness is linked to an apparent gap in the language of disability and impairment for describing our bodily experiences. Organisations of and for disabled people rarely refer to ‘chronic illness’ in the way we do. And government systems of disability assessment don’t have tick boxes for our recording our experience.

The CIIP combined in-depth focus group research with a survey gathering over 2,000 responses. Across a wide range of reported diagnoses and disease groups, respondents reported that pathological fatigue, or energy limitation, was the most restricting feature of their condition, closely followed by pain.

Yet, participants said, their experience of energy limitation was frequently dismissed with the notion that “everyone gets tired”. As one participant living with COPD put it:

My ‘real’ disability is one that very few people know about and which I’m sure would not entitle me to use the word ‘disabled’. I have extreme, life destroying, tiredness. It limits my life far more than my emphysema and yet that’s the thing that raises sympathy.

So what we are coming up against is a socially constructed idea of disability. According to norms and stereotypes, being disabled means looking different and displaying evidence of functional incapability. But if disability, in the public imagination, is about Otherness, being ‘tired’ just makes us like everyone else, only with less moral fibre.  

The hostility described by participants went beyond failing to understand to actively denying and casting doubt on their testimony. We call this form of oppression disability denial and disbelief. The impact of disability denial and disbelief are far reaching. The invalidation of having bodily experience denied is traumatic on a personal level. On a social level it can destroy our closest relationships, leaving us bereft of support. On a practical level, disability denial bars our entitlement to support and impedes our right to equality and inclusion under the law.

Energy limiting conditions are very common. According to government data, “impairment of stamina, breathing or fatigue” is the second largest impairment group among disabled people in the UK.

But we are rarely seen as a group of disabled people. Medical classification systems carve us up into specialisms: – neurological, rheumatological, etc. They erase the lived experience we share of energy limitation.

Not having a term to describe our common form or impairment, people with energy limiting conditions often identify as ‘ill’ rather than ‘disabled.’ We don’t find our access needs as disabled people have been thought of, let alone met, by society.

We need a language that identifies us within the landscape of disability. Our survey respondents preferred the terms ‘energy limiting chronic illness’ and ‘energy impairment’ to existing language such as ‘fluctuating condition’ or ‘long term health condition’ for describing the impact of their health condition. ‘Fatigue’ is too easily heard as ‘feeling tired’, whereas energy impairment allows us to get across, not just an unpleasant sensation, but a restriction of function that can be total.

People with ELCI need an advocacy movement of our own, not separate from the existing Disabled People’s Movement in the UK, but as a constituent of it. As a movement, we need to be challenging disability denial and disbelief. If we take the social model of disability as our framework, we can say disability denial and disbelief are disabling.  We suggest it should be seen as a form of ableism. Deaf and disabled people’s organisations must unite against ableism in all its forms.

As an advocacy movement we also need to ensure that the concept of energy impairment is included in all aspects of policy making around disability, and educating public bodies and private businesses about the adjustments and support we need in order to achieve equality and inclusion.

Some of these solutions for inclusion are to be found in digital technology. All three researchers and many of our participants are, to a greater or lesser degree, housebound due to energy impairment. But the CIIP flourished thanks to online focus group software; teamworking apps like Slack and video conferencing tools that brought us together in a virtual face to face meetings.  

By harnessing the potential of these technologies, the CIIP engaged hundreds of people who said they had never been listened to before. It was also created the opportunity to do emancipatory disability research in a new way. The support we received from the Centre for Welfare Reform, and the uniquely enabling ethos of the DRILL programme meant that three researchers who were locked out of academia or mainstream employment were able to, not just have a job, but take the reins of the project.

The DRILL programme will come to an end, but the CIIP must continue and grow. This report lays the groundwork for our manifesto, to be released later this year. It will call for people with energy limiting chronic illness to be seen and to be believed.  

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