Tag: chronic illness

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Christmas is the Only Time of Year I don’t Feel Guilty for Resting 

Christmas is a confusing and often stressful time of year. It both challenges and reinforces a lot of the organising principles of British society.

Gendered roles come to the fore for many, heterosexual nuclear families are idealised and huge strain is put on people on lower incomes to provide a ‘perfect’ Christmas in times of financial hardship and minimal state support. 

But there are also elements of escape and subversion. One of the ways this is most apparent is through the celebration – and indeed idolisation – of rest over the holiday period.

For the vast majority of the year, hard work is held as hugely important not just in terms of economic productivity and output but morally, too. We are told that being a hard worker is a virtue and conversely being ‘lazy’ is something not only undesirable but implicitly cast as selfish and a personal failing. 

The message is clear; good people work hard and those who don’t are either inferior – if they can but choose not to – or to be pitied – if they can’t work at all. 

This kind of hustle, work-obsessed culture is harmful for everybody, but especially for disabled people. 

Many disabled people can’t work or can only work certain hours, sometimes because of their disabilities, sometimes because of the inflexible nature of many jobs and the difficulties in securing reasonable adjustments – despite them being a legal requirement. 

This contributes to disabled people’s financial insecurity – especially as being disabled comes with its own extra costs – but also can be damaging to disabled people’s mental health in a society that places work in paid employment on a pedestal. 

So, that’s why Christmas feels like a truly special time of year. For me, it’s not about the usual ‘magic’ of Christmas but the chance for rest to be socially acceptable for once. 

Because Christmas is still the holiday in the UK that the calendar year is organised around, and that most workplaces organise themselves around too, it’s the only time of year that you can be confident that almost everybody will be off email for a few days and that there will be no expectation of a speedy reply. 

It’s also the one time of year where doing nothing feels socially acceptable. 

Obviously, rest at Christmas is far from achievable for everybody – particularly those with caring responsibilities or those who work in hospitality or other service industries – but it is the case that images of relaxation are promoted in a way that at other times of year would be unthinkable.

Adverts and other forms of media encourage us to ‘take a break’ and ‘put our feet up’. The pressure to have a great Christmas can be isolating and problematic, but it is also notable in its rareness to see how much pleasure and relaxation are turned into virtues for a brief moment in time.

As someone with a disability that makes work challenging for me, Christmas provides a break from the guilt that can come from not fitting into society’s mould that celebrates productivity in wage labour above all else. 

Despite the fact that I passionately believe that no one should have to work if they don’t want to and that so-called ‘hard work’ is by no means a moral arbiter, I still find myself feeling guilty when I prioritise rest throughout the year. 

It’s a kind of internalised ableism that I’m still trying to work through by being compassionate to myself, doing things at my own pace and learning how to truly rest.

But come Christmas, no one is surprised or disapproving when I get up late, don’t leave the house all day or choose to stay warm and cosy. 

Friends understand and even praise me for things that make my life easier and happier whereas they would usually be (at best) taken aback by. In fact, people often swap stories (sometimes competitively, which is its own problem!) about how ‘little’ they’ve done and how much they’ve tried to chill out. 

It’s like people’s desperate need to rest gets bottled up until the end of the year and then fizzes over because we all know that come January the pressure will be back on, often with the addition of punitive resolutions and goals for the upcoming year.

Resting is something many disabled people have to learn as a skill for their own survival. It’s not something we are taught to value or even taught how to do as we are grow up, despite it being an essential life skill. 

I’ve had to read articles and books on it, and schedule it into my calendar to make sure that I actually do it. But for about one week a year, it feels far more natural and normalised, far more of a core value, alongside aspects like community, love and shared celebration. 

Although it’s very far from perfect, Christmas provides an all too brief glimpse of what society could look like if we held up rest as a necessity both for health but also for its own sake – for pleasure and the sheer enjoyment of doing nothing. 

What is, in many ways, the most consumerist time of the year, also provides a glimmer of what life could look like if capitalist notions of work weren’t centred so completely. 

So, this Christmas, I’ll luxuriate in the knowledge that my rest isn’t only accepted but encouraged, and I’ll try to enjoy that as much as I can – while it lasts. 

But I also know that longer-term, this isn’t sustainable – for me, for other disabled people, and for not yet disabled people. We cannot live on the scraps of rest we are sanctioned one period a year. 

We need to take what is culturally permissible at Christmas, and think about how society can be organised differently to support it at other times, too. A liveable future must centre rest as an achievable thing for everybody – the true Christmas miracle would be seeing that translate to every month of the year.

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How Pressure to Provide a ‘Resolution’ is Impacting Disabled Stories

Feminine presenting person with red hair sitting on the arm of a couch reading a book, she has a prosthetic leg

I can see it non-disabled people’s eyes. The anticipation, the holding of breath, the waiting for a neat conclusion. When I talk about my life, when I describe recent difficulties or periods of pain or illness, they want a story in the traditional sense. They want resolution, a clear narrative arc, a sense of an at least partially happy ending. 

And I give it to them. I find the discomfort and messiness hard to articulate and I want to save them from it, even if I can do no such thing for myself. So, I wrap up things up tidily, perhaps with a comforting smile, and say ‘but things are much better’ or ‘everything is fine now.’

But that’s not my life. 

Chronic illnesses and pain don’t just end conveniently when we want them to. It doesn’t follow a three act structure with a beginning, middle and end, that is so important in Western storytelling. It comes round again and again, with peaks and troughs, improvements and flare-ups. Pain might be gone for weeks, months or even years but that doesn’t necessarily mean a chapter can be closed. 

Of course, all lives are singular and hard to encapsulate neatly but disabled lives and disabled bodies especially belie a narrow, potentially suffocating ideal of what a story looks like. 

As a writer, I know how powerful a clear narrative structure is and how difficult it can be to fit a disabled story into a non-disabled mould. In nature writing, which is where I began my writing journey, publishing has often leaned into the idea of the nature ‘cure’ which doesn’t speak to how I, and many other disabled people, experience nature. 

Sure, I love being in nature when I can be and find aspects of it both soothing and energising. It can help me feel better in some ways, particularly with my anxiety, but activities like hillwalking – which I love – can also make my physical pain worse. In short, it’s complicated and not a straightforward ‘cure’.

Writers like Josie George and Polly Atkin are writing about nature in fantastic, nuanced ways, showcasing how complex and moving writing which takes a different, winding and complicated shape can be. But there are still far too few disabled voices getting published in mainstream literature and I’ve got to wonder if this is partly due to the industry not knowing what to do with our stories or perceiving them as ‘unsellable’, alongside a lack of accessibility. 

This is a problem that goes beyond the writing world, forcing disabled narratives into obscurity and making it harder to tell everyday stories of our lives, with their joys, difficulties and challenges. 

The pre-existing shapes that stories are slotted into do us all a disservice. Whether we are disabled or non-disabled, readers or writers, the shapes of stories are important. Seeing similar patterns to our own, seeing similar experiences represented or finding something relatable in a story should be something that disabled people can do. 

We should be telling our own stories, in all their intricacy, complications and potential for discomfort. And for non-disabled people to never read or hear a disabled story forces us further into invisibility, giving ground to the idea that we don’t exist and therefore don’t need to be listened to or valued, or have our needs met. 

After attending an insightful recent workshop on disabled narratives with Charlotte Heather, founder of The Remote Body which runs writing workshops for disabled and chronically ill people, I was inspired to think further about what shape my story could have. 

Instead of an ‘arc’, I was encouraged to think of it as a circle, or a perforated line, or as a meandering river with tributaries breaking off it – to try out different ways of telling that reflect the way my pain goes up and down without a clear endpoint, and repeats itself cyclically. 

The possibilities are endless, and creatively rich. They’re not only important in terms of amplifying disabled voices, but they are interesting from a craft perspective and have so much to add.

So next time I talk about my pain or my body, I’ll try not to grin and bear it, and make my story fit into non-disabled patterns. 

I’ll try not to make other people comfortable when talking about my own discomfort. I’ll let it be the shape that it is; organic, changeable, hard to figure out. I won’t shut down possible futures by ascribing my own ending.

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Living with Both Physical and Mental Chronic Illnesses Shouldn’t be a Case of “This or That”

Street signs reading "One Way"

Everyone experiences pain in some form at least once in their lives. To me – pain has become an intrinsic part of life as mental anguish blurs into physical throbbing. As a young, seemingly healthy woman, my pain has remained cloaked behind invisibility rooted in the intense emotional pendulum of my borderline personality disorder and the bone-crushing pressure of my thoracic outlet syndrome.

Having first experienced debilitating twinges of my physical disability at the age of 16 and then falling slowly but surely into the void of my mental health illness at age 20, I’ve had a decade to get used to one and six years to come terms with another.

Now, at nearly 26, what I face is less about the pain – both physical and mental- itself, and more about the guilt-ridden burden of feeling like I have to choose between which of my illnesses I allow myself to be vulnerable about. 

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