Those good intentions

What’s with the stick?

Oh no, what’s happened to you?

What’s wrong with you?

I can see where these questions come from. I’ve asked them myself (except for the last one, which seems really off, to me). They’re well meant. They’re compassionate. Sympathetic. They recognise that I am injured, and they want to know why. They want to know if I’ll be ok. They want to know what’s going on with me. And from close friends, those questions are obviously fine. But from acquaintances, or even strangers, I’ve been getting increasingly uncomfortable with them.

The story around my hip and back issues is long, complicated, and not particularly interesting. I have a lot of pain, which is exhausting, and I don’t particularly want to have to explain the details several times a day. In fact, I don’t really want to explain the details at all. So I tend to brush it off with “it’s complicated, but I’m getting better.” Often this results in tales of hip replacements (which I don’t need) and offers of referrals to specialists – which, again, are well intentioned, but misplaced. I have a team. My well being is a work in progress. I don’t need your advice, your medical history, or the horror story of your friend and her hip replacement.

But it wasn’t until my daughter shared this article from The Conversation in her Instagram Story, and it included the comment “It is inappropriate to ask people about their diagnosis or impairment if not related to the topic at hand” that it dawned on me that, actually, even though people ask with good intentions, it’s ok to defend my privacy, to deflect, and to say “I really don’t want to go into detail.” And it’s NOT ok to ask people why and how they are impaired.

Like I said, I’m sure I have asked those questions. And it applies to trans people, too (not that being trans is an impairment!). Cisgendered people (ie not trans) want to show their support, and sometimes they do it by asking a lot of questions. Questions like: Are you on hormones? Have you had surgery? When did you know you were trans?

Not that being trans is a disability. But trans folks and disabled folks are faced with similar lines of intrusive questioning. “What’s wrong with you? What medical treatments have you had? What treatments are you going to have?” Along with a whole heap of unwanted advice. We should not be asking people about their medical treatment, or diagnoses, or why they are using mobility aids. It’s not our business. Just stop. Please.

In Sydney last week I was getting into an uber when a random stranger nearby decided I needed help. She was tiny, and kind of frail, and in the same breath as asking if I needed help, she picked up my heavy bag (which I was very capable of lifting myself) and slung it into the uber, tried to help me as I got into the car, and then helped make sure my skirt wasn’t going to get shut in the car door. All the while ignoring my response that I was ok, thanks, and did not need help. She was extremely well intentioned. As I thanked her she said “My husband is in a wheelchair, I know.” She was trying to help. I didn’t actually need help, I just needed time and space to get myself into the very low slung car (a problem for tall folks with mobility issues), and I was ungainly. I did appreciate her help. I was happy to have met such a kind person. But at the same time I could see how someone else might have felt disempowered by her leaping in and giving help where it wasn’t wanted or needed.

I have a close friend who I call my adoptive big brother. He is an impressive human being in many ways, but one of the things that always strikes me when I spend time with him is how alert he is to the people around him. He doesn’t leap in where he’s not needed, but he is aware of anyone struggling around him, and he will just pause to make sure they’re ok before he moves on. That is incredible compassion and understanding. Many of us, with compassion but less understanding, will leap in and try to help where it’s not wanted. My big brother just checks that they’re ok, and doesn’t intervene until it’s really necessary. And even then, he will ask, and honour the response.

It’s that sensitivity to people’s autonomy that is difficult for most of us, but something we should all be striving for.

It’s ok to want confirmation that someone is ok. It’s ok to want to know what’s going on with them. But maybe we need to stop, more often, and ask ourselves “is this something I need to know?” “Is this really my business?” “Am I asking very personal questions?” and just stop before we get started. It’s also ok to ask if there’s anything we can do, but be prepared to be told “no”, and honour it.

Start from the assumption that people are private, and autonomous, and you won’t go far wrong.

Sticks and Stones

Like many people, life has been throwing a lot at us over the past year or so. Much of it, it may surprise you to learn, I haven’t written about. Turns out I do have boundaries. Or limits. Or something.

One of the particularly challenging things has been my hip troubles, which, despite support from a fabulous physiotherapist and wonderful myotherapist, have been quite recalcitrant. I work hard, make progress, then get hit by something else that sets me back yet again. For example, I was very nearly back to normal mobility when I got covid in April of 2022, and the combination of being bedridden and largely immobile for too long, and the inflammation that goes with covid set me back so far I began to believe progress was impossible. My attempts to prevent pain and protect my poor abused muscles lead to a kind of cascading failure state where everything I did to try to fix one thing made something else sore. I felt quite beleaguered.

It reached the point where I was lurching like some kind of twisted, drunken, troll, and couldn’t even begin to figure out how to walk normally anymore. At some point along the way I purchased a walking stick, having carefully measured according to all the guidelines I could find, though I resisted using it for anything except extreme pain during travel. Unfortunately that careful measurement failed me, because none of the guides to measuring reminded me to wear shoes. The only stick I could find that was tall enough was only tall enough (and it was marginal) when I was in bare feet. Like most people, I wear shoes when I’m out, and a walking stick that’s too short tends to make the twisted, drunken, troll thing even worse.

When my physio suggested using a stick to train me to walk more upright, I embarked on a search for a walking stick tall enough for all 185cm of me. Sadly, the walking stick industry appears to cater exclusively to short people, and I was stumped. I managed to find a nice tall set of crutches, which my kiddo made much more palatable to me by decorating them with rebellious slogans like “Fuck da patriarchy (& the fossil fuel industry)”, “Trans Rights”, “Crazy Cat Lady”, and my personal favourite: “Warning, will attack the education system if left unsupervised. (Supervision may not be sufficient).” I felt so seen.

Elbow crutches, though, are tedious, especially in the heat, and tend to rub on the forearms if used for any length of time, so I was keen to graduate to a walking stick. On social media I lamented the lack of options for someone my height. Enter my amazing friend, Christian Klopfer.

Christian is the founder and proprietor of Oztables, where he makes the most extraordinarily beautiful, functional, and strong furniture you’ve ever seen. In 2020 he designed and made these glorious shelves for our living room – note how the wood grain on the front of the cupboards goes all the way across, those doors were made out of a single piece of reclaimed timber – and we have long admired his work.

Christian offered to make me a walking stick out of reclaimed timber that would be exactly the right height for me, long legs and all.

Being a meticulous sort, he carefully researched the ideal shape of both stick and head, and set to work. He chose an absolutely beautiful piece of timber (though I suspect that all timber becomes beautiful in Christian’s hands), invited me over to test drive the handle and check the height, and then finished it with careful polishing and a natural hard wax finish. I was so inspired by the final result that I used it as the centrepiece of a talk at the ATSE Activate conference.

My walking stick is a truly glorious thing that brings me great joy, and every time I use it I am reminded of the power of friendship, kindness, generosity, and sheer artistic talent. I am extraordinarily lucky in my friends. See for yourself.

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.

Not gone, but apparently forgotten

Covid entered our house again this week, this time taking down my husband and my daughter. For now the 15yo and I seem to have escaped this round, but it’s early days yet. Based on the incubation period and when my husband tested positive, we could still succumb.

Fortunately we’re all as vaccinated as we can be, and while they were pretty sick for a couple of days, covid doesn’t seem to have hit too hard. The trouble is, there’s always the possibility of long covid. Or any one of the myriad other “side effects” of the virus that can hit in the years to come. Increased risks of Parkinson’s disease, Diabetes, and heart disease are just some of the ones we already know about, and these risks all seem to be independent of the severity of the initial infection.

Here in Australia there is a new covid wave rising. Hospitalisations (our only even remotely reliable measure now) are rising, though as data is only reported weekly, we don’t know how sharply yet.

I’m at high risk for many reasons, the one that scares me the most is that I’ve already got long covid. I’m getting better, but I am terrified of what another infection will do. Long covid can completely destroy your quality of life.

What really worries me, though, is that we don’t know who’s at risk. Anyone can get long covid. Anyone can suffer heart disease as a result of covid. Anyone can wind up with Parkinson’s. We don’t know what the risk factors are. We still don’t really know what this virus does, or how it does it. And it’s not going away.

Which is why I find it utterly bewildering that governments around Australia have removed all of the public health measures that might shrink the wave. On Thursday the Queensland Health Department tweeted that the best things we could do to avoid covid were to sanitise and maintain social distancing of 1.5 metres indoors. I can’t remember what the third thing was, and I can’t check, because the tweet was deleted after Professor Brendan Crabb from the Burnett Institute politely and eloquently shredded them.

It’s outrageous to me that a government department of health should be spouting nonsense that was firmly debunked literally years ago. We know that covid is airborne. It can hang in the air for hours after the infected person has left. Social distancing is useless if you are in a poorly ventilated space. Sanitising is irrelevant to the spread of covid. We know that the things that work against the spread of airborne diseases are better ventilation, HEPA filtration, masking, and avoiding indoor crowds. Incidentally the flu is also airborne, so these measures would help protect us from that, too. Yet few people know this, and even fewer seem to care.

No-one is required to mask anywhere except in hospitals and other healthcare settings. Not on public transport. Not in shops. Not in cinemas or theatres. Vulnerable people are told to just stay home, yet I cannot stress enough that WE DO NOT KNOW WHO IS VULNERABLE TO THIS DISEASE.

Of course telling vulnerable people to just stay home, even if we know exactly who they are, is an appalling violation of human rights and basic decency. Just isolate indefinitely. Forget having a life. Forget being able to be a part of your community. If you want to be safe, just become a hermit. We don’t care about your wellbeing, we just don’t want to have to wear a mask, or install better ventilation, or organise our events to be properly covid safe. (Or risk losing an election by forcing everyone to do that.)

Next weekend there’s an event I’d have loved to be able to attend, but it’s at a bar, in a small, poorly ventilated space. It will be overcrowded, and we’ll have to shout to be heard, which means everyone will be breathing hard and no one will be masked. It’s ideal conditions for a superspreader event. And this is normal. Because we’re back to normal. Living our lives. Not being afraid.

Yet if you’re not afraid of covid, you really haven’t been paying attention.

Our health system is broken

In my book, Raising Heretics, there is a section about the disturbingly unscientific nature of medicine. One of my proof readers commented on that section, saying he didn’t think it could be accurate. Medicine is considered a science, after all. It is, ostensibly, evidence based, rigorous, and carefully documented. This is the start of that section:

“When I was a kid, doctors were treated as demigods. Patients did what they were told, and trusted that medical treatment was always based on science and evidence. Despite a range of negative experiences with the medical profession over the last few years, my default response to health professionals is still one of trust, so I am always horrified when I look into the evidence base for particular treatments, or specific drugs, and discover the alarming lack of scientific rigour that underpins a lot of common medical treatments.
It is disturbing in itself that the term “Evidence Based Medicine” was first coined as late as 1991, by an academic by the name of Gordon Guyatt at McMaster University. It was not, initially, a way of practicing medicine. Instead, it was the name of a course designed to encourage medical students to make their practice more scientific.
If evidence based medicine was only just being talked about in the nineties, you have to wonder how medicine was practiced before that. Sadly, a startling amount of medical practice has historically been based on assumptions, untested theories, and arrogance. And much of it still is.“

Excerpt from Raising Heretics: Teaching Kids to Change the World, 2021.

Unfortunately, faith in medicine, in doctors, and in test results, is often not only misplaced, but very dangerous indeed. Much of this is not the fault of doctors, who remind me of teachers in that many of them, especially General Practitioners, are doing a wildly difficult job without nearly enough time, resources, or support to do it properly.

In 2016 my daughter had an X-Ray taken of her hips. The radiologist – a qualified medical specialist – who reported on the X-Ray described her hips as normal. When we showed that same X-Ray to her orthopaedic surgeon, he measured the angle of her hips and found it was massively abnormal, which explains why her hips were spontaneously dislocating with every step. Had we paid attention to that radiologist, Zoe’s hips would likely still be dislocating. As it is, she has had radical surgery on both hips and can now walk normally.

In 2000, after four or so years of a debilitating post viral condition that massively impaired my quality of life, and endless rounds of blood tests, scans, and appointments with dismissive medical specialists who felt I was just “trying to do too much”, or possibly I was just an anxious person, I finally figured out that I was probably insulin resistant. Tests came back positive, I started a low carb diet, weight training, and medication, and soon had a whole new quality of life.

I am not a medical doctor. It was hours and hours of trawling through medical literature, as well as online stories from other sufferers, that helped me figure it out. Recently, a random GP at the practice I attend announced in horror “You’ve put on 24kg in FOUR YEARS!” and stared at me accusingly for some time, as though I had spent those four years on a gluttonous rampage of repulsive proportions. After going home distressed, and ranting about that GP for some time, I realised I am once again insulin resistant. Tests confirmed it, it’s now being treated, and on we go.

In 2005, when a friend’s daughter was diagnosed with fructose malabsorption, I went and read up on it and figured out that it could well explain a lot of my gastrointestinal issues. Another round of tests and yep, there I was, successfully diagnosing myself again.

In 2016 I saw a sleep specialist who was alarmed by my symptoms, booked me in straight away for a sleep study during which I got NO deep sleep AT ALL, found my sleep apnoea score was low, and dismissively told me I was fine, I just needed to relax and lose weight. I went home crying.

Eventually I got myself a Continuous Positive Air Pressure (CPAP) machine despite my low score, and found my quality of life improved dramatically, but still wasn’t great. I eventually summoned the courage to see another sleep specialist, who, while correctly diagnosing and treating the remaining problem, pointed out that a low score like mine (above the diagnostic threshold but not crazy high) was indeed fine to ignore, unless the patient snores (FYI, without CPAP I snore like a crazed rhinoceros), in which case CPAP is very effective.

In 2021 my daughter, Zoe, went to see a cardiologist because we suspected she had POTS – Postural Orthostatic Tachycardia Syndrome) – as she kept getting incredibly dizzy, even fainting, when she stood up. That specialist swept into the room, magnificent in his arrogant confidence, and pronounced Zoe merely “deconditioned” as a result of her hip surgery.

Despite the fact that she was very fit and active, he declared that she just needed more exercise. Zoe was understandably dispirited by this, and as her condition worsened over time, she eventually got a referral to a different cardiologist, who reviewed the first cardiologist’s notes and found that BY THAT FIRST SPECIALIST’S OWN CRITERIA, the tests done by that arrogant, ignorant, buffoon of a cardiologist showed that Zoe did, indeed, have POTS. Had Zoe taken that first doctor seriously and not followed up to get a second opinion, it could have been very dangerous.

I hesitate, under the current conditions of vaccine hesitancy and covid denialism, to write a piece that could undermine confidence in the health system, but here we see the huge difference between medicine and science. Vaccines are developed in the lab, rigorously tested, thoroughly documented, and side effects tracked. Much of the medical treatment we receive is not subject to these standards. At all.

But I am so very, very tired. I don’t want to have to become a de facto specialist in order to understand and treat my own health. I want to be able to go to a compassionate, empathic doctor who can see me as a person, take my reported symptoms seriously – even if they can’t measure them! – and use careful, scientific approaches to diagnose and treat any issues that arise. That doesn’t seem to be an approach supported by our health system at all. Ten to fifteen minutes for a standard GP appointment is not enough for the GP to tackle anything complex, or even to explore different explanations for the patient’s concerns.

This health system of ours, with specialities carefully sectioned off, as though the cardiovascular system and, say, the musculoskeletal system are independent entities with no influence on each other, is badly, dangerously broken. From the heart to the gut, the teeth to your toes, the body is a single system with complex, interwoven needs that are poorly served by siloed compartmentalism that looks at a single organ in isolation.

When a specialist can declare a patient “fine” because they do not have that specialist’s particular issue, regardless of the patient’s quality of life or the possibility of future damage from undiagnosed conditions, we clearly have a problem.

When a specialist can ignore the evidence in front of him in favour of his own arrogant assumptions, and there is no-one to call him out on it, we clearly have a problem.

When patients with complex, chronic health conditions must repeatedly self diagnose before they can make progress, we clearly have a problem!

As Anna Spargo-Ryan, author of A Kind of Magic, puts it:

“This is true of all chronic illness; I have had to fight desperately just to be understood well enough to be pointed in the right direction.

When people with complex mental illness aren’t able to self-advocate, they die.“

I can’t help wondering how many people are quietly suffering, having been misdiagnosed, or told they were fine when they clearly were not, because they mistakenly trust in a system that is not fit for purpose. Too many patients, especially women, are told they just need to relax, stop working so hard, or just stop fretting.

We need to demand better of our health system. Our GPs need time to listen, to pay attention, to research, and to see the whole patient. Our specialists need to be trained to see the whole patient, not just the particular condition they specialise in, and they need to be trained to be sceptical of their own results – to test their theories, and to query their assumptions. Doctors are human, and they make mistakes, but the system assumes they are perfect. There are no checks and balances. No-one to coordinate and challenge patient care except the patients themselves, who are very rarely qualified to take that role, particularly while unwell!

Above all, as patients, we need a health system that hears us, takes us seriously, and concerns itself with our quality of life, rather than merely with our test results.

The long twilight of long covid

Medicine is alarmingly unscientific sometimes. For a whole host of reasons, including privacy, politics, and arrogance, there is no systematic tracking of side effects of drugs, or reactions to different infections, or how effective various surgeries are as interventions for particular conditions, or anything at all, really. And nowhere has this been more apparent than in our collective response to long covid.

What is long covid? We have no idea, except that it could be a collection of any of over 50 different symptoms – quite possibly many, many more.

How long will it last? We have no idea, except that we define it officially, as still experiencing symptoms from 12 weeks post infection.

How many people have it? We have no idea, except that some estimates suggest as many as 30% of people with covid will experience long covid to some degree. It could be higher.

The numbers, at least, we could be tracking. In Australia, confirmed covid cases are largely recorded – originally, we had a record of who had tested positive on a pcr test, and now we are supposed to register a positive rat. Sure, lots of people who get positive rats probably don’t register them, and lots of people who have covid probably don’t bother to test.

Still, we have an unprecedentedly large cohort of people we know have had covid. Probably. (Rats and even PCRs can have false positives from time to time.) We could be following up with all of those people, or some representative sample of those people, or really anyone at all to find out how they are tracking with symptoms. But, although there is research into long covid, there doesn’t appear to be any systematic tracking & followup of people who have had covid. So we don’t know much at all.

The thing is, this is still a huge step forward over how much we know about existing post viral syndromes, which have been wreaking havoc among a small section of the population for decades – probably a lot more. Until long covid hit the global consciousness, Post Viral Fatigue, or Chronic Fatigue Syndrome, or Myalgic Encephalitis, or whatever you want to call it, was largely considered a myth. An excuse. Extreme hypochondria. Nothing real. Nothing worth taking seriously.

I had post viral syndrome in my early twenties, and I was gaslit by many in the medical profession, who seemed to think I was just trying to do too much, or a little anxious, and I should really accept the energy levels I had available to me. I spent years struggling with exhaustion, brain fog, aphasia (inability to find the right word), and frequent recurrent infections. I was horribly unwell, my lifestyle wildly compromised, largely unable to work, and told this was just my life now, and nothing to really worry about. I eventually found a supportive immunologist, but there was little he could do aside from acknowledge that I was genuinely unwell. That, in itself, was enormously reassuring, because even my parents, with their medical backgrounds, did not believe I was actually ill.

Eventually I clawed my way back to health. I learned a lot along the way, including the very tough lesson that trying even harder to get well could make me worse. I had to learn to rest, push myself a little, rest some more. Too much pushing could send me backwards, but so could too much rest. Those few times I summoned the strength to get out and socialise, I could appear almost normal while I was out, but it was painfully easy to overdo things, and I’d wind up paying the price for days, if not weeks.

There’s an art of knowing when, never try to guess.

Toast until it smokes and then

twenty seconds less.

Piet Hein, Grooks II

But there was no guidebook. No rules. No clear, evidence based approach to getting better. I was determined, but I was also lucky. Some people never got better. I don’t think I ever got all of my energy back, but I did pretty well. I got fit. I had kids. I had a busy working life.

Enter the pandemic, and the one thing that we do know about long covid, which is that people who have had anything like it before are very likely to have it again, probably worse.

In May, after over two years of extreme caution, I got covid. Last Friday my post covid fatigue officially became long covid (because it’s been more than 12 weeks and I still have symptoms). I have a little aphasia, but not as much as last time. I get brain fog, but this one is different – it feels more like a weird compression headache. I know when my head feels that way I need to stop and rest immediately. It probably means I needed to stop and rest an hour or so earlier, but who knows? I get hot flushes, random pain, dizziness, constant exhaustion, breathlessness. I don’t want this to be my life.

Sometimes I get out and do things. Others I lie on the couch and struggle to summon the energy even to heat up a bowl of soup for lunch. I’m working, but less than usual. My social life is carefully doled out, like strictly rationed treats, and sometimes it’s still too much, but without social contact I won’t cope at all. Meanwhile I’m also trying to repair a hip injury, which requires a consistent approach to exercise that I am simply not capable of right now.

This all sounds dreadful, but I’m a lot better than I was, and I think I’m probably on the road to full recovery. I am better, this time, at not overdoing things (it would be hard to be worse!) and more likely to rest when I need to. That will help. I’ve just had my fourth booster. That will help, too. But it will almost certainly be a rollercoaster, with plenty of frustrating ups and downs. Everyone’s experience of long covid is different. Some people might never get better. Some will wind up with auto-immune diseases like Multiple Sclerosis or Parkinson’s. Covid leaves a footprint, and there’s no knowing who it will crush, and who will barely feel it.

Last time I had post viral syndrome I lamented the fact that I couldn’t use my body as a science lab – tracking everything, monitoring the smallest variations, trying to find correlations between minute changes in, say, nutrient levels, or hormones, and how I felt. I really wanted to understand what was going on with my body, and try to optimise my recovery.

This time, with so many people falling ill, maybe we can finally apply some science to this thing. We are sometimes very arrogant about our understanding of the body and what we can do, but the sad fact is we remain wildly ignorant. Sure, we can chop out mis-aligned hip joints, reposition them, and bolt them back into place facing the right way, but we can’t do anything like that to the immune system. Perhaps it’s time for a little humility, and a lot of science. And trying really hard not to get (or spread!) covid.

* For more on medicine’s lack of scientific rigour, check out Chapter 2 of Raising Heretics: Teaching Kids to Change the World.

Less is More

I grew up believing I was terribly lazy. My kids find this bizarre, because they see me as a workaholic. In my head I still identify as a lazy person, though I sometimes wonder we were all taught that we were lazy, because we didn’t give 100% all the time. Certainly the dominant ethos that I was raised with, at home and at school, really amounted to “if you’re not giving everything 100% all of the time, you’re slacking off.”

The trouble with this idea, of course, is that the human brain is not capable of giving 100% all day every day, and it’s not capable (nor should it be!) of caring about everything the same amount. We have to choose where to devote our energy. We have to have times where we’re just doing the minimum to get through, as well as times where we are actually resting. Really resting. Lying on the couch, feet up, lazing about style resting. That’s a literal requirement of physics, physiology, and biochemistry, that downtime. We are not physically capable of sleeping 8 hours, working 8 hours, and “playing” 8 hours. We need breaks. Lots of them. And even when we’re not on breaks, we can’t be working at maximum output continuously. It’s just not how we’re wired.

But the message I grew up with was clear. Work hard. Do everything as close to perfectly as you can manage. If there is a problem, work harder. If you don’t achieve what you wanted to achieve, put more effort in and you’ll get there. If anything is out of reach, keep stretching. Want to do well in that subject? Study harder. Want that promotion? Work harder. Need to lose more weight? Diet & exercise harder. You can fix anything just by putting in more oomph.

Which is why covid recovery, for some, is psychologically brutal. Because to get better, you need to rest. You can’t exercise your way out of it – that makes you sicker. You can’t diet your way out of it – that makes you sicker. You can’t push through it and work your way out of it – that makes you sicker.

But you also can’t exactly rest your way out of it. Because if you become bedridden, you lose muscle, you lose fitness, you lose lung capacity… everything goes downhill. If you stop thinking about hard problems, you soon lose the ability to think about hard problems. And, for me at least, if you stop seeing people, you start to completely lose your mind.

There’s an art of knowing when

Never try to guess

Toast until it smokes and then

Twenty Seconds Less

Piet Hein, Grooks II

So you have to strike a balance between physical and mental health. Between not overdoing it and not doing enough. Between staying alive and having a life. It’s tough.

It’s a little like recovering from a joint injury, like a sprained ankle. If you just run on that sucker, it will get worse, fast. But if you don’t walk on it enough, it won’t get better. And there’s no convenient readout that tells you when to stop, and when to do more. Of course, the ankle is just one joint. It’s a relatively constrained problem. There doesn’t seem to be any limit to the bodily systems covid can impact. And fixing some conflicts directly with the rest required to fix others, which is a joke at least as cruel as the one that made all the junk food we crave bad for us in the long run.

Until tech solutionism does something useful for a change and develops a forehead readout that tells us exactly what’s going on with our bodies in excruciating detail, and what to do about it, there’s no way of knowing how much is too much or too little. Medical support remains thin on the ground (and, frankly, doctors are still at the ‘throwing things at long covid and seeing what sticks’ stage of treatment).

I just want nice clear rules to follow. I will work any amount of hard to fix this. Unfortunately, working hard is exactly the wrong thing to do. So here we are, fumbling around, trying to maximise our energy and minimise our suffering, and remain viable human beings in the meantime. What fun.

Covid, like grief, doesn’t necessarily have an end

When you suffer a shattering loss, there seems to be an expectation – almost a requirement sometimes – that your grief has an end date. That it is contained, and follows some kind of predictable, regular path, with widely understood scope and processes. If you’re lucky, an outpouring of kindness provides casseroles and flowers for a week or two, and then life goes back to normal. Except, for the bereft, it never actually does. New foundations must be built. New coping mechanisms created. A new life constructed out of the ruins of the old one, perhaps looking much the same, but irrevocably different. And grief, of course, never ends.

Eventually you learn to incorporate grief into your life such that you can, for the most part, carry on. There will always be times, though, when it crashes over you like a wave. Sometimes pulling you under, sometimes merely leaving you cold and shaken.

Obviously that’s intense grief. Some griefs are smaller – more transitory – though they do tend to accumulate, and trigger surges of the griefs that came before them.

There’s no objective calculation that tells you how you will experience any particular loss. For some, the death of a parent is little more than a relief. For others, a devastating blow. Sometimes a chance met stranger becomes a fundamental part of your life in moments, and their loss is devastating. There’s no equation that can tell you how close a person is to your core, how connected they are to your heart.

A month ago I finally caught covid, after dodging it through a combination of caution and luck for over two years. It turns out that covid is a lot like grief. Some will experience it sharply, but briefly, while others are shattered by it indefinitely. Still others barely even know they have it. And we still expect it to have an end date.

Vaccination helps reduce the severity, but there’s always a risk of ongoing effects, and there’s no known way of calculating who is at risk. You can be young and fit and suffer for years. You can be older and more sedentary and be over it in days.

Yet it feels as though we have developed a narrative for handling the idea that someone we care about has covid. We recognise that everyone’s experience will be different. We check in diligently for a week or so, but just as quarantine ends on day 7 (except it doesn’t, as some symptoms require you to remain in isolation, although few people seem to know that), so, too, does our care and concern. Just like grief, we require covid to have an end date. To stop worrying us. To stop being difficult.

We expect workers to return after 7 days. We expect students to be back in class. We expect all disruptions, and causes for concern, to be swept neatly under the carpet. Secure in our smug “Only old people die” story, which is both untrue and deeply dubious from an ethical standpoint, we look away from the auto immune disorders, cognitive dysfunction, and heart problems that we know are accumulating, and bury our heads in the sand.

Peek a boo, I can’t see you

Everything must be grand

Book a pee, you can’t see me

as long as I’ve got me ‘ed in the sand

Peek a boo, it may be true

there’s something in what you’ve said

But we’ve got enough troubles in everyday life.

I just bury me ‘ed.

The Ostrich, Flanders & Swann

Just like grief, or climate change, or any other complex and terrifying phenomenon, it’s much easier to believe it will just go away. We’ll get over it quickly, or solve it with technology, or it won’t happen to us. The trouble is that there’s no way of knowing who it will happen to, nor even what will happen. It’s entirely possible, indeed quite likely, that there will be long term effects of having had covid that we don’t even know about yet.

It’s much easier, and more comfortable, to look away. To pretend this is just another flu. To “go back to normal”, as though we’re not facing a threat of unknown magnitude. As though there will be no consequences. As though we’re safe.

Five weeks post infection, I know that’s not true for me. Like grief, covid has left a heavy footprint on my body. Who knows what bruises I’ll find in a week, a month, a year. Perhaps I’ll find that new foundations must be built. New coping mechanisms created. A new life constructed out of the ruins of the old one, perhaps looking much the same, but irrevocably different. Just like grief, it’s possible this will never end.

We can’t keep looking away.

This is something I will remember

When my daughter suggested in December that she buy tickets for Andrew and I to go to Midnight Oil for Andrew’s birthday, I hesitated. Omicron wasn’t yet a big deal, but I was still nervous about crowds, and we’ve been incredibly cautious. Here we are in April, and we’re still being super cautious, but the concert was outside, and… well… it was Midnight Oil’s farewell tour. They’ve been a big part of our lives. How could we say no?

So there we were, last night in Rutherglen. All Our Exes Live in Texas were a fabulous warm up, followed by the amazing Hoodoo Gurus, but Midnight Oil is where our heart, our history, and our activism come together in Peter Garrett’s passionate roar. From the moment the Resist Fist clutching a flaming earth appeared on the screen I was transfixed.

All of my emotions were on that stage all night. I cried. I raged. I soared in ecstasy. I screamed, and sang until my throat was raw. (I’m doing an excellent Barry White impersonation this morning.)

Every song is a complete act of protest. Every line a statement of outrage, of desperate sorrow, of a demand for justice. Where some try to write stirring speeches, Midnight Oil put their heart and soul into songs that give no quarter. That tear down our complacency and replace it with a burning urgency for change. They give eloquent, searing voice to our yearning for justice.

It amazes me that Rob Hirst’s drumsticks don’t catch fire. There was one particular drum solo last night that didn’t seem physically possible, it was a frenzy of sound and movement that created an extraordinary moment. Surely it took five drummers, not one, to produce that magnificent complexity. But it was the acoustic version of My Country, when Rob’s sweet, sweet voice joined Peter’s, that took my heart out, tore it into shreds, and reassembled it into something better.

Delayed from March due to covid ripping through the band, and other concerts cancelled due to the kind of amped up storms that are par for the climate change course, Peter Garrett declared that it was no longer the Resist tour – they were now calling it the Persist. And that is singularly apt, for a band that has resisted, and persisted, and spoken up for what they believe in, from start to finish. This is something we will remember. Remember. REMEMBER!