Mainlining Cortisol

I’ve been mainlining cortisol since August 2022. The whole family has.

Cortisol is the body’s primary stress hormone. It makes sure you are ready to fight that tiger, defend yourself from that catastrophe, catch that prey. It does this by making sure there’s plenty of glucose in your bloodstream at all times, and by suppressing important but non urgent functions like digestion and immune function. This is great for short term fight or flight responses. It’s not such good news for long lasting crises.

According to the Mayo clinic, having stress hormones running rampant for more than short periods can “disrupt almost all your body’s processes”. In addition to the obvious side effects like headaches, digestive problems, and disturbed sleep, among other things it can cause heart disease, weight gain, and cognitive impairment. It is clearly not a substance you want to have kicking around at high concentrations for extended periods. It’s not likely to end well.

And yes, there are many things we can do to try to manage it. Meditation. Counselling. Time spent with friends. An unexpected visit from a startlingly sneaky close friend from overseas gave me a week’s reprieve, by virtue of plenty of hugs and distraction.

But, ultimately, when life keeps throwing grenades at you in the form of serious health problems for your daughter, you have to keep responding to them. Our health system makes things so much more traumatic than they need to be that I’ve written a four thousand word essay on the topic, and it barely even begins to tell the story, even when my test readers told me they had to read it between their fingers, it was so horrific. (I’m looking to publish that essay to a wider audience, so hopefully you will see it one day.)

The thing is, if you or a close family member have never experienced a complex, hard to diagnose health condition, you have no idea what this is like. We have this beguiling illusion that health is simple. We may need antibiotics, blood pressure medication, or even minor surgery from time to time, but it’s all manageable, well understood, and covered in the textbook. Sooner or later life will go back to normal, if we do as we’re told and follow all the medical rules.

But there is a section of the population that knows life is not normal, the health system is untrustworthy, and whose only experience of hope is to watch it dwindling. We have no idea of the size of this population, because it is largely invisible, tends to keep its head down (often napping, to be honest), and spends the energy available to it trying to appear normal long enough to maintain work, relationships, and something that might, on occasion, look almost like a social life from a distance, if you squint.

I get all itchy when I say the health system is untrustworthy, because here I am, a scientist, and passionate advocate of evidence based everything, sounding alarmingly like an anti-vaxxer. For the record I am fully vaxxed, as is my family, and vaccines are extraordinary examples of science and evidence based medicine applied in all the right ways.

But, in a way, vaccines are playing to medicine’s greatest strengths. Our system has been optimised for things that can be measured, and, by some fortunate chance, viral loads, antibodies, and case loads are extremely measurable.

The trouble starts when you develop a condition that we don’t currently have the technology to measure. And I constructed that sentence very deliberately, because I do believe that most health issues are measurable, but there are so very many that are sufficiently complicated, or poorly understood, that we simply don’t know how, yet. Long covid, for example, is currently poorly understood, but there is so much research pointed its way that we are slowly gathering a collection of measurable things that will no doubt help with treatment in the long run.

But show up at your GP’s office with headaches, dizziness, exhaustion, insomnia, pain, and nausea, particularly while guilty of being a woman, and watch how they dismiss, belittle, and gaslight you into thinking maybe it’s your diet, your exercise habits, your lifestyle, your weight, or in some other way your fault and also not serious. None of these things are objectively measurable (yet), so it is very easy to pretend they don’t really matter, or even exist.

It’s a form of confirmation bias, really. The doctor who says “Oh, I had a patient who complained of headaches and nausea, but I told her it was all in her head and she went away.” may never learn that that patient’s quality of life continued to deteriorate. Instead, the doctor smugly assumes they have prevented someone from continuing in their hypochondria, and never becomes aware that they have been one more gaslighting, bullying asshole in a patient’s endless health system trauma.

You could be so ill that you can barely stand some days, but if it’s not visible on a blood test or MRI, the health system simply shrugs and turns its back. We are a highly educated family capable of reading the latest medical literature (and understanding it), and yet we are struggling to find a path through this.

Meanwhile, Zoe’s condition continues to deteriorate, and her quality of life is terrible, though you’d never know it from outside, because her courage and strength of character keep her spine straight until no-one is looking. You’ll find a lot of chronically disabled folks are like this. (Try to bear that in mind when you are tempted to judge someone for things they do, or do not do, while wrangling complex health issues.)

So if you are lucky enough to be a textbook patient (if you are a patient at all) who responds in all the expected ways, revel in your good fortune, but spare a thought for those of us who are not. And if you work in the health system, I urge you – no, I beg you – take your patients seriously, listen to them, and take the time to provide them with the support they need, whether their condition is objectively measurable or not.

Start from the assumption that people seek medical help for good reasons. Who knows what you might learn?

Unsubscribing from gender

We are bizarrely obsessed, as a society, with knowing someone’s gender. And trying to draw lines around what we define as “real” gender. Recently, while listening to my non binary 15 year old casually referring to one of their friends as he, they, and she in the space of just a few sentences, happily careening from pronoun to pronoun, it occurred to me that our desperate societal attempt to cling to rigid gender categories is doomed to rightful failure.

Our society has some really weird attitudes to gender, but I’ve been slow to realise that, perhaps, the weirdest attitude to gender is the idea that it matters at all.

My parents, born in the 1930s and raised in white, middle class, conservative families, would often say in too-loud, whispered asides “You can’t tell whether that’s a man or a woman!” when they saw anyone whose gender was at all ambiguous. (And, it must be said, their idea of ambiguous gender presentation was a man with long hair…) It seemed to them to be the most outrageous, bizarrely extreme idea ever that a person’s gender was not writ large upon their presentation. The idea of trans folks was one they simply could not wrap their heads around. The culture in which they were raised did not allow it. People must be labelled on sight, and squished firmly into one of two boxes. In hindsight, maybe that was one of the reasons our relationship was always rather fraught. I have never been very good at staying in my box. Or my lane.

I do notice, though, that if I don’t catch myself, my brain tends to run along disturbingly similar lines. When I see someone new, I automatically try to categorise them. To fit them into a box. I have rather more boxes than my parents did – my boxes include non-binary, agender, and in a nod to the mountain climbs in the Tour de France, one I think of as “Hors Catégorie” (“beyond/outside category”) – but they’re still boxes. To some extent, boxing people is a trait that’s built into the human brain. It’s helpful to categorise, in order to save our brains from continuously calculating every detail of a scene. Even if it’s only “threat” or “not threat”, we do need to categorise. But why are we so hung up on knowing people’s gender?

If young people can throw pronouns like confetti, and be wedded to none of them, why must society still insist on fitting people into neat little gender boxes?

In actual fact, why do we ever need to know? I can see why, medically, sometimes it’s important to know what organs a person has, (which, of course, does not tell us anything about their gender) but beyond that, it really doesn’t seem relevant. Perhaps we could stop. Perhaps, when a baby is born, instead of asking if it’s a boy or a girl, we could ask for their name, and whether they are healthy.

My business is legally required to ask if my employees male or female, for tax purposes – it’s likely part of the identity verification process, but there’s absolutely no meaningful need for it. We could scrap that, for starters. Clothing in shops – easily fixed, sort it by style, not by gender. Dresses. Skirts. High waisted, fitted jeans, low waisted, straight jeans. Clothes for tall folks (oh, please!). Clothes for shorter folks.

Toilets? Urinals, and stalls. Easy. Toys? How about we let kids pick the toys they are genuinely interested in, instead of forcing them into an avalanche of strongly gendered choices.

Sports? Why not sort them by strength, size, speed, or ability, instead of gender? I know a young man who is extraordinarily good at volleyball, but it’s all but impossible for him to play professionally, simply because he is “only” 183cm tall. How is that fair? Miguel Indurain, record breaking professional cyclist, had a lung capacity much larger than average, which was a huge part of his advantage. How was it fair for him to race against cyclists with normal lung capacity? Splitting sport into mens’ and womens’ is a lazy bigotry that has nothing to do with fairness, and everything to do with reinforcing stereotypes.

Maybe we have actually reached the point where we can move past our obsession with gender and work, instead, on obsessing about health and happiness, and making sure everyone has the support they need to reach their full potential.