The language does not exist

I find it difficult to describe what life is like for me as someone who lives with chronic pain. Why is that so?

Note: Living with chronic pain is not a topic that I am capable of discussing in a simple or objective way. I feel complicated and messy about it, so my writing on the subject will be always be complicated and messy. I hope that’s ok with you.

In Virginia Woolf’s genre-defining essay, On Being Ill, she writes about how difficult it is to describe pain:

' I am in bed with influenza, he says, and actually complains that he gets no sympathy. ' I am in bed with influenza'—but what does that convey of the great experience; how the world has changed its shape; the tools of business grown remote; the sounds of festival become romantic like a merry-go-round heard across far fields; and friends have changed, some putting on a strange beauty, others deformed to the squatness of toads, while the whole landscape of life lies remote and fair, like the shore seen from a ship far out at sea,

She puts it better than I ever could. Pain and illness have the power to change the world’s shape but because pain is subjective, it’s hard to describe. I’m sure most of you are familiar with the concept of the pain scale. You know: the doctor asks you to rate your pain using a scale of one to ten. But this is an inadequate system. Everyone has a different experience of pain, and within our own experience there are different kinds of pain: mental, physical, empathetic, phantom, diverted etc etc. And furthermore, within those categories, there are sub-categories, and so on and so forth. It’s enough to make your head spin, and the pain scale just isn’t enough. But words aren’t enough either. With most things, I believe in the power of language in the same way a religious person believes in God. I’m a writer; language is how I order and experience my life, but when it comes to describing what it is like to live with pain, language fails me.

I’ve been chronically ill for over a decade and yet I still reach into my word bag and come up empty when I try to explain how it feels to live like this. I simply do not know how to talk about it. In all this time, I haven’t even managed to come up with a name for my experience of illness, a term to use when someone asks me the simple question: what’s wrong with you? Here are a few that I have tried and discarded.

(A reminder that I’m talking about how I feel about these words. You may think differently and that’s fine. Feel is the optimum word here.)

Disabled

Despite the work I have done, the books I have read and the therapy sessions I have cried my way through, I feel too well to call myself disabled. Technically, the conditions I deal with are ‘dynamic disabilities’: conditions or impairments that vary in severity and impact over time. My conditions are categorised by periods of flare-ups and periods of remission. My illnesses are invisible and inconsistent. I am the most physically well I have been in over a decade, but my health and pain levels still vary day to day, sometimes even hour to hour. There are huge privileges to being unwell like this; I have been able to get a university degree, hold down various part-time jobs and write a novel. However, it has been, and still is, unbelievably difficult to build a life living under the shadow of illness, and this is made more difficult still by the fact that I do not know how to explain my conditions to ‘normal’ (read: able-bodied) people. I call myself disabled with no caveat and people look me up and down and I can see their disbelief written on their faces. I look fine, if you don’t inspect me too closely. Not to mention, the word disability and its connotations conjures up a whole can of ableism worms that I have to deal with whenever I use the word in reference to myself. It’s too much, it’s not enough.

Ill/sick/unwell

Saying that I’m ill or sick conjures images of food poisoning and tonsillitis, acute conditions that will reach an apex of suffering and then go away. The fever breaks, the swelling goes down. If I tell someone that I am ill, the assumption is that I will recover, usually in a day or two. This is not my experience. If your illness has no cure, but also will not kill you, there is an unspoken time limit on the sympathy you receive. Get well soon quickly turns into why aren’t you better yet? 

Chronic illness

For the last few years, ‘chronic illness’ has been my go to descriptor when talking about my own health. The word chronic (which comes from the Greek word khronos, meaning time) feels weighty and accurate as a definition for how much pain affects my life. However, I get the sense that a lot of able-bodied folks don’t really understand what it means, and they’re either too polite or uninterested to ask me to elaborate.

Poor health

I have almost nothing to say about this one except that it conjures images of Victorian ladies sent to the beach to ‘take the sea air’. It’s a bit fainting couch, a bit wussy, a bit insinuatory of mental illness. I have used this occasionally when applying for extensions on university essays when I don’t want to tell my tutors what exactly is going on with me and in that situation, it can be pleasingly mysterious.

Literally just saying what is wrong with me

More and more lately, I have resorted to naming the specific condition that’s plaguing me most at the time: I have endometriosis or I suffer with migraines. It’s simple and to the point. Although, lots of people do not know what endometriosis is and when I describe it, occasionally I am met with minor revulsion. There are still men that feel grossed out by the word period in the year 2024. Sorry to those men’s current and future girlfriends.

The problem with the word ‘migraine’ is that lots of people think that it’s just a fancy word for headache. It isn’t. This combined with the fact that in fiction, migraine is often used as a comic device, an insinuation that the migraine-haver is faking it. “Oh aunt Sue has a migraine.” wink wink.

So, all this to say, we don’t have sufficient language to talk about pain, yet. I can’t help but wonder (in true Carrie Bradshaw style) if this is because there is no narrative to chronic pain, no end or resolution, simply the ebbing and flowing of pain and suffering. How do you talk about something like that?

In On being ill, Woolf calls to centre writing about illness in the wider cannon of writing. She points out that illness affects everyone in some way and the topic deserves to take its rightful place in literature beside themes such as love, battle and jealousy. I agree with her, but it seems like the only way to do that is for chronically ill and disabled people to stand up and shout about their experience. How are we supposed to do this when we are in so much pain? I barely have the energy to get out of bed some days, let alone fight for the inclusion of pain writing in the wider literary cannon.

When I put it like that, it sounds like I have no life at all, yet here I am. Living.

Me with a migraine but make it sexy