“You’re about 48 hours away from sepsis” she said from behind the teal fabric of her mask.
I hadn’t opened my mouth for more than two seconds before the dentist was instructing the technician to write a prescription. 500mg three times a day. With food. No alcohol.
Sepsis. I hadn’t heard that word in a while.
Three years ago to be precise, the last time I saw my Granny conscious. She knew who I was but not that it was Christmas morning.
“Are you not in pain? Do you not feel unwell? You should be in agony.” the dentist enquired.
“Yesterday, I felt exhausted. And I’ve looked like a hamster all week. Puffy. But it doesn’t hurt. But my pain tolerance is a little off...”
The dentist and the technician exchanged glances. I had a serious infection, but you wouldn’t have known it. I didn’t even know it.
My incredible manager at work told me that I hadn’t needed to have worked that week if I was ill. I tried to explain that genuinely, I didn’t know I was sick. Or at least, that sick.
Hell, the night before I finally got seen by an emergency dentist, I went to chess club, played several games before going to the chippy and the pub because the weather was shite and at the very least the pub is warmer than my flat. I had anticipated spending the night in Urgent Care a la NHS 111’s advice, but according to the receptionist they ‘didn’t do teeth’.
There’s a sense most people take for granted. In fact there’s a couple, but we will focus on interoception for now. In its simplest terms, interoception is the processing the feelings and sensations in your body (including emotions) and how they are communicated to your brain, or not. If your body is dehydrated, you are made to feel thirsty and therefore likely to pick up a can of Diet Coke glass of water and drink it.
Autism is always talked about as affecting the brain, and that is true, but the brain is no less part of the body than Mars is part of the Solar System. Autistic people, like me, experience a lot of differences in the ways our bodies exist and operate.
There’s a BAFTA selects podcast where Gwendoline Christie talks about working with Jane Campion on Top Of The Lake, and how the biggest lesson Jane taught her was to trust her body and what it was saying. I remember listening to that interview and thinking ‘if I trusted my body, I’d be dead by now’.
My body is an unreliable narrator - it’s not necessarily incorrect, but it cannot be relied upon for an accurate account of events. Everything it says has to be taken with a pinch of salt.
It’s been somewhat tricky to reconcile myself to this fact. It goes against much of what has been espoused by practitioners, theorists in feminist and body-positive spaces for the past decade. Working back from the idea that (capitalist) society has a vested interest in our disconnection from our body, they place a real emphasis on listening to your body. And whilst there is definitely an element of that at play - after all, I’m a person in the world - that’s always an added twist on what is already a swirling internal ball of chaos.
Interoception differences in neurodivergent people manifest in three main ways, which I boil down to: too much, too little and what the f*ck is happening? Neurodivergent responses has a more practical resource which defines what profiles mean in practice. I very much swing towards the ‘too little’ and I find it both fascinating and baffling in equal measure when people are sensitive.
Parsing feelings and emotions don’t come easily to many neurodivergent people, but sometimes I wonder if it’s just that we are also trying to deal with so much information anyway, that internal cues get missed. As my friend Eden put it: “ We are likely constantly uncomfortable due to so much sensory input from the environment around us, we're used to ignoring when our body feels off because it's the same bodily response. I get a headache when the lights are too bright, there's too much electricity around me, or I didn't sleep, or I had too much caffeine, or my ADHD meds are wearing off. How am I supposed to know that the headache I somewhat regularly get means I'm ill?”
I always joke that my body doesn’t do things by halves, but it’s more that I don’t notice them until things are extremes. They literally don’t register. It applies to emotions too - I’m not suppressing them, they just don’t register. Think of how different microphones pick up different levels of noise; some are designed to be incredibly sensitive to the tiniest of infractions. Others you have to be practically inhaling to be picked up. That’s what it’s like.
Interoception is something I have the vocabulary for now, but my issues with it have been there forever. I have memories of being seven and going to school with a tooth abscess that would almost blind me by the end of the week. At nine, the kidney infection so bad my urine sample was scarlet with fresh blood. I’m not the only one; a friend shared with me this week that she was in kidney and liver failure because of an infection and didn’t know she was in pain until the morphine got into her system.
It goes without saying that interoception difficulties put us more at risk of serious illness. We have a healthcare system in the UK which is responsive, not preventative and it usually requires you to go to a doctor with an existing concern to be seen. In an ideal world, neurodivergent people would be invited for regular check-ups by doctors who are informed about neurodivergence, but that rarely happens.
I have developed systems to make sure I eat, sleep, drink, move. It’s trickier now I live alone. The only person checking in on me, is me and the dozens of alarms I have set and the occasional pigeon that tries to enter my flat whilst the laundry is drying.
You’re supposed to end a newsletter with a point; wisdom or insights or a question. I wrote this both to share something everyone experiences and not everyone realises they have, but also out of the frustration of being told to listen to what you need, what your body needs as though that were straightforward, achievable or possible for everyone.
Autism can feel like hard work at times. It’s hard work I forget I am doing, and that others are all too keen to overlook. I wonder if maybe if I were in pain earlier I could have gotten seen, rather than spending my Saturday night in London tucked up in bed, necking metronidazole rather than margaritas.
But then, I wouldn’t have been lying in a bed with three cats, writing this. So maybe, reader, some good has come out of it.
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