“In the kitchen.”
That’s the loving, slightly infuriating, term my partner likes to use for my less-mobile days.
Being “in the kitchen” means many things. It means assignment extensions, missed phone calls from friends and countless packets of acrid, disgustingly sweet electrolyte powders. Most ironically, it means I am fused to the couch, and he will be the one doing the cooking.
I should clarify, for fear of dragging out an inside joke: the “kitchen” refers to my handful of diagnoses mainly triggered by dysautonomia – a really crappy Autonomic Nervous System – and hEDS, or hypermobility. My original diagnosis, Postural Orthostatic Tachycardia Syndrome, or POTS, is where my partner’s “kitchen” nickname came from. Get it, POTS and pans? Kitchen? He thought it was clever.
Aside from being difficult to say ten times fast, Postural Orthostatic Tachycardia Syndrome is a type of dysautonomia that impacts the body’s ability to run on autopilot. The most commonly thought of symptom of POTS is the “tachycardia” part of the name. When standing up, a normal body needs to work a little harder to prevent gravity from causing blood to pool in the lower half of the body. This takes a couple minutes, as the blood vessels and the heart work to get blood flowing back to the brain like normal. In a person with POTS, this system is out of whack. The arteries don’t do what they should, and the heart has to work extra hard to get the blood flowing. This causes fainting spells, dizziness, nausea, increased heartrate and abnormal blood pressure.
But POTS is a little more complicated than just that. The Autonomic Nervous system has a pretty important job in the body, from temperature regulation, digestion, balancing hormone levels and stress responses, to things as fundamental as breathing. When it isn’t doing this job properly, a person’s ability to function can be impacted in a myriad of ways.
As a child, this came across as an undeniable, and often hilarious, lack of coordination. My first time roller-skating earnt me the nickname “gangly giraffe”, my body so busy with overcorrecting its other systems that balance fell to the wayside. I could never join the other kids on the monkey bars, as it would mean my arms would be sore for days and my handwriting would turn into even more of a scribble than it already was. I remember asking a friend of mine if it also hurt her to stand or at least made her feel like there was a bag of sand in her chest. She just looked at me funny.
Looking back, I mourn for the kid who was laughed at, who could never join gymnastics class or play tag with her friends, opting to sit in the shade instead. I mourn for the kid that did not have the words to describe her pain, that did not know why her body couldn’t do what others could.
According to the Australian POTS Foundation, approximately 800,000 Australians are currently living with POTS, 70% of which are forced to permanently quit their jobs. Yet despite being fairly common, POTS and conditions related to dysautonomia are severely under-researched, an unfortunately common characteristic in illnesses primarily experienced by those assigned female at birth. 70% of POTS patients originally had their symptoms misdiagnosed by professionals as anxiety. On average, people see 6 doctors before the problem is properly diagnosed.
My experience was eerily similar. After multiple iron infusions, 3 years of unanswered questions, and an entire lifetime of living in a body I knew was different to the ones around me; I felt like I was screaming into empty air. Doctors shrugged, semi-convincing expressions of pity on their blurry faces as they told me they did not know why I was like this.
Yet that long-awaited diagnosis was not the saving grace I hoped it would be. It only meant reckoning with the fact that I did not know when this would end. POTS is not a life-threatening condition by any means, and I am eternally lucky for that fact, but symptoms can be lifelong. There is no fix all, no one name I can give my pain, no pill I can take to make it all go away.
Management is an uphill battle. When the body struggles to do the things it should without even thinking, then the tasks I have to think about sometimes feel impossible. Brushing my teeth, eating, showering, cooking, remembering to take my fistful of medications morning, noon and night. All these things start to feel like punishment. Doctors’ visits become to do lists with endless check-ups at various specialists, each bringing new sets of various demands for me each visit. My brain goes foggy just thinking about it.
Yet there was one thing the doctor did not warn me about, a symptom I was not taught to manage or flatten down with medicine and rest: guilt.
Guilt comes on days when I cannot leave my bed, when a bowl of potato chips must pass for a nutritious lunch, or when I must yet again email my tutors, tail between my legs, sheepishly asking for extensions on overdue assignments. On those days, the fact that my body cannot keep up with the requirements of my life feels like a moral failing. It is hard to de-condition a mind that has been taught since young that productivity makes you a good person, that stillness is laziness, and one should be shamed back into motion.
Throughout all of this, I am lucky to have the people in my life that I do. People who care, who try to understand, who have eternal patience. Yet guilt is an unknowable and infectious thing. It twists the motivations of those who love me, tells me that my illness is a burden not just on me, but on them. I bite my tongue, holding back excessive apologies and thankyous each time my partner takes on my share of the housework, or a friend kindly drives me home because I do not have the energy to walk.
Sometimes I take all this on with an arrogant, blind independence that only leaves me in a heap on the floor. All because asking the people that love me for help feels like I am spitting in their face.
And sometimes, there are moments when my partner makes a stupid pun about my illness and suddenly its power is gone. Suddenly it is not a burden, a shadow lingering above us. The darkness dissipates and there is only me, shaking my head and holding back a laugh.