‘House-or-bedbound’: Accurate Lived Experience, Not Offensive Language

As our community navigates the complex and often brutal realities of energy-limiting conditions (ELCs) like Myalgic Encephalomyelitis (M.E.), we can sometimes find ourselves at the crossroads of language and lived experience. This was highlighted last week in comments posted in reply to a The Canary Facebook post that included these seemingly innocuous sentences in the sub-heading: ‘If you are house-or-bedbound and can’t attend.’ and ‘However, this is an in-person march that’s not accessible to house-or bed-bound chronically ill and disabled people.’ in the main body of the article.

The comments which are the focus of this blog are below –

‘”bound” it’s not 1972. You can simply say those not able to attend in person, you don’t need to use offence, outdated language to police the Good Crip boundary.’

I commented in reply –

‘It’s the language used by those with lived experience so it is not the wrong language.’

Their reply –

‘What absolute bollocks. You can use any language you choose to describe YOUR lived experience, you don’t get to impose YOUR choice of language over the top of the hard bloody work disability activists and researchers have done on correcting ableist, offensive language.

If you want to describe yourself as ‘house-bound’ you are welcome to, that doesn’t make it acceptable for journos to completely ignore professional writing standards that don’t reinforce stigma, which this dreadful line does.

The swift and vehement condemnation of my comment as ‘absolute bollocks’ and stating that house-or-bedbound was ‘ableist, offensive language’ by a self-described disability rights lawyer, academic, and employer of disabled people highlights a disconnect. While I, as ME Foggy Dog, unequivocally supports the invaluable work of disability activists in dismantling harmful language, and phrases like ‘wheelchair-bound’ are indeed unacceptable, it’s crucial to understand why, for many within the chronically sick community, ‘house-or-bedbound’ is not only not offensive, but an accurate and necessary descriptor of their reality.

The social model of disability rightly emphasises that disability is not an inherent flaw in an individual, but rather a consequence of societal barriers. For many disabled people, these barriers manifest as inaccessible infrastructure, discriminatory attitudes, and lack of reasonable adjustments. The fight against language that reinforces these societal failures is paramount. AGREED.

However, for those of us with ELCs, our primary barriers, as a community, are distinct and often overlooked:

• Underfunding of Research: A shocking lack of investment in understanding the biological mechanisms of conditions like M.E. leaves millions without diagnosis, effective treatments, or hope for recovery.
• Lack of Treatments: The direct consequence of underfunding is a significant void in care and treatment options. We are not simply unaccommodated; we are often abandoned by medical science.
• Neglect of Healthcare: From dismissive doctors to inadequate support services, the healthcare system often fails to recognise, validate, or treat our conditions, leaving us to navigate debilitating symptoms with little to no professional guidance.

When we are house-or-bedbound, it is not primarily because a ramp is missing, or a workplace is unwilling to make accommodations (though these are also issues). It is because our bodies are fundamentally, biologically compromised, often to the point of profound and sustained physical collapse. The post-exertional malaise, pain, cognitive dysfunction, and extreme exhaustion are not merely inconveniences; they are deeply incapacitating symptoms that physically restrict us.

‘The Canary’s’ response to this linguistic debate perfectly encapsulates the thoughts of many in our community:

‘For reference [name], this article was written by someone with lived experience of chronic illness. Nearly 50% of the Canary team are chronically ill and disabled. We are all aware of the social model of disability and why language like ‘wheelchair bound’ is unacceptable. However, in this context – particularly for chronically ill disabled people living with ELCs – being confined to your house or bed due to society catastrophically failing you is a restraint, and is certainly not something that should be watered down by using phrases like ‘not able to attend in person’ – as this is downplaying the reality of millions of chronically ill disabled people’s experience.’

I posted this question on social media in the immediate aftermath of this Facebook discussion-

 ‘Is there a different term we use that I am unaware of? Where the term ‘bedbound’ is concerned I take the lead from YOU #pwME . It’s the term so many of you use.

Is this a chronically sick v disabled language issue?’

Here are some of the replies – 

‘Given their life success, they may have a disability that isn’t as necessarily life-limiting as ours. They assume we can’t mean “bedbound” and “housebound” literally, which is erasure. Describing our reality isn’t stigmatizing, but policing our language around it actually is.’  N.C. (Twitter) 

‘Language prohibitions are generally a very bad idea in the disability community. Makes chronic illness look like a culture war issue and an identity stance rather than a biological reality.’  V.V. (Twitter)

‘Bedbound & housebound (with rough % for each) – I use both to check, and describe, my own functionality level.’ M.A. (Facebook)

‘This is just silly. Many wheelchair users who aren’t sick object to ‘wheelchair bound’ because their wheelchair is their aid to mobility & freedom. But being in a bed or a house is nobody’s aid to freedom. Hence bedbound & housebound fine. And accurate for mod/severe MECFS.  A.G. (Twitter)

‘I am predominantly ‘house bound’ and that is the term I use to describe it!’ S.C. (Facebook)

‘I’m ‘house bound’ and openly say it! (One alternative I’ve heard from the US is ‘shut in’ which is 1000% worse!).  J.C. (Twitter)

‘Blimey, I use the term housebound because I pretty much am, and bedbound because a lot of time is spent on my bed. What else can, sorry, should I be using about my own circumstances?’   C.E. (Facebook)

‘I think there is a big difference between disabled and chronically ill that is not understood by many who are not chronically ill.  You can be disabled and not chronically ill but if you are chronically ill you are also disabled. People see disabled individuals achieving things and saying they won’t let their disability stop them which is such a toxic narrative in itself but most definitely can’t be applied to chronic illness/certain disabilities. Chronic illness does stop things, at differing levels for different illnesses but it’s not something that can just be pushed through without having a detrimental effect. It really frustrates me that healthy and disabled people don’t see this difference. C.N. (Facebook)

‘I think there is a little bit of confusion on different types of disabilities. It can be an accurate term for those of us with ME, but not for those who are still able to work as she is describing. I don’t know of any reason why housebound or bedbound isn’t appropriate for ME.’  S (Twitter)

Thank you to all who responded to my question online from within the ELC community.

This is not about imposing our language on others; it’s about accurately reflecting our lived experience. To suggest that ‘not able to attend in person’ is a suitable replacement for ‘house-or-bedbound’ is to profoundly misunderstand the nature of our disability. It sanitises and diminishes the severity of our illness. We are not merely ‘unable to attend’, we are physically restrained by the limitations of our illness, limitations that are exacerbated by a society that has catastrophically failed to provide us with the research, treatments, and understanding we desperately need.

The word ‘bound’ in ‘house-or-bedbound’ in this context isn’t about an external, oppressive force, but about an internal, physiological reality. It speaks to the severe restriction of movement and activity that defines daily life for many with ELCs. It communicates the profound impact of our conditions far more effectively than euphemisms.

While ME Foggy Dog, as a social enterprise, stands in solidarity with the broader disability rights movement and its fight against ableist language, we also ask for nuance and empathy when discussing the unique challenges of ELCs. Our fight is not just for accessibility, but for recognition of the biological underpinnings of our illness, for scientific advancement, and for a healthcare system that does not neglect us.

When individuals in our community, and those who represent us (as is the case with The Canary), use terms like ‘house-or-bedbound,’ it is not to reinforce stigma, but to articulate the stark reality of our lives,  a reality shaped by profound illness and societal neglect. Let us not allow debates about language to overshadow the urgent need for meaningful change in research funding, treatment development, and healthcare provision for the chronically sick community. Our words are not meant to offend; they are meant to be understood.

ps. I have deliberately not shared the link to the original Facebook post as I do not want there to be a pile-on, our community has enough divisiveness to deal with at the moment.

Sally