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?

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.

To sleep, perchance to bounce

I didn’t think anyone would be particularly interested in my sleep medicine saga, but I wanted to write it up because that’s one of the ways I process things. So I wrote it as a really long facebook status (I know, I know, facebook is not far from public) and figured people could choose to read it or ignore it. I expected most to ignore it, and I was therefore fascinated to find that it got a lot of attention. Maybe there is a hitherto unexpected hunger out there for information on sleep disorders and doctor shopping. Or maybe my facebook friends are just weird. You decide.

For those interested in tales of bizarre sleep therapies, read on. For those who are not, I’m sure there are some cat videos further on in your feed. Move along, and whatever you do don’t make eye contact with the crazy lady.

My sleep is lousy and has been for a very long time. I went to one sleep specialist who agreed there was a pretty severe problem. He did a sleep study on me (which involves being wired up like a processor board and then told to “sleep normally” in a hospital bed) which proved that, yup, my sleep is woeful.

“Just sleep normally,” they said.

The study showed mild sleep apnoea and a whole lot of unexplained, but extraordinarily poor quality sleep. My doctor therefore declared that there was no real problem, and very helpfully suggested I lose weight. Let’s not even talk about how hard it is to diet when you are beyond exhausted. That’s only a minor issue. It turns out that sleep deprivation actually changes your blood sugar regulation making weight gain more likely.

Let’s just say that particular specialist didn’t get another visit (except in my dreams where I shouted at him a lot). What I was dealing with wasn’t the problem he was looking for (severe sleep apnoea), therefore as far as he was concerned there wasn’t a problem. This seems to be a surprisingly common attitude among specialists. “You don’t have my problem, so you don’t have any problem.”

I felt utterly defeated,and quite desperate. After doing a lot of reading, and against the advice of my specialist, I treated the mild sleep apnoea with a CPAP machine (Continuous Positive Air Pressure), which helped a lot, but didn’t quite get me over the line. The initial bounce eventually settled and I remained exhausted. Not as exhausted as I was before, but it was still dragging my quality of life way down. In despair, I slugged about feeling rotten for months. Feeling exhausted all the time is second only to being in a lot of pain all the time – I have tried both, and I really don’t recommend either!

Finally I decided to try a different specialist. I went back to my GP who didn’t know who to recommend, so we perused the list and eventually chose one for the very technical reason that he was nearby. Well. That turned out to be an extraordinarily good move. This guy listened. And cared. And talked about evidence. While the previous specialist seemed rather disconcerted by the way I turned up to our first appointment with graphs, and horrified by the way I wanted access to the data from my own sleep study, this new doctor actually seemed to find my nerdy, data-centric approach useful. After a full, frank and quite entertaining exchange of views, and a few attempts at more conventional therapies, he suggested sleep restriction – basically an attempt to persuade my body to maximise its sleep quality by restricting the amount of sleep it has access to. Not for the faint hearted!

Taking an exhausted person who is getting  around 10 hours of sleep per night and suggesting she cut back to 6.5 is a brave move – my kids were concerned it was some kind of oblique murder attempt aimed at them – but I was desperate enough to try anything. In a move that endeared my doctor to me no end, he was quite open about the fact that although it is well studied and documented for insomniacs, there is limited evidence for sleep restriction in cases like mine, where the sleep quality is poor but getting to sleep and staying asleep is not a problem. He was very clear that it was a long shot, but I figured it was worth a try. I’m a sucker for scientific honesty.

So for 2 weeks I cut back to 6.5 hours of sleep per night and went quite spectacularly mad… and then, quite suddenly, it started to work. Subjectively I was feeling a lot better, and objectively my actigraphic sleep tracker was actually showing flat spots – I was lying still! – as much as 75 minutes long. This is something I have never seen before. My usual sleep pattern has no flat spots at all. Constant movement is my theme – I sleep like a threshing machine.

Interestingly when I extended the sleep back out to 8 hours the wheels fell off, so it’s back to 7.5 for me, and maybe 7 if that’s no good. I can tinker with it from here to get it as close to perfect as possible. But there is light at the end of the tunnel. I’ve had a couple of days of bounce – and it’s been a long, long time since I have bounced. If this really works my students are in for quite a shock.

There is one chief lesson I take from this, which is that when a doctor tells you that you don’t have a problem, or that nothing can be done, you have only his or her word for it. Doctors are as fallible as the next person, and the human body is far more complex and variable than we really know how to admit. Just because one doctor is stumped, or uninterested, doesn’t mean that there is no-one out there who can help you. Finding a doctor who takes you seriously, listens, and is willing to experiment, is sometimes a challenge, but it is definitely worth the struggle.

The second chief lesson is that your health is in your hands and nobody else’s. You don’t have to do what you are told by a doctor, however eminent, and you are always entitled to a second, third, or even fourth opinion. Medical professionals may rail against “Dr Google”, but an educated patient is best equipped to participate in his or her own treatment. I don’t have medical training or specialist knowledge, but I need to understand my own condition and explore my options. A doctor who doesn’t think that’s a good idea is not someone I can work with.

The third chief lesson (I’ll come in again) is that quality sleep is the foundation of absolutely everything, and more sleep is not necessarily the answer. I was tired, so I slept more, which worsened my sleep, so I slept more (I think you can see where this is going). I needed expert advice to fix that, but I needed a good relationship with that expert to make it possible. Some relationships are never going to work, in which case you should not hesitate to move on and find one that does. It can change your whole life.

Now if you’ll excuse me, I have some bouncing to do.



That’s Dr Thingy to you

Saturday’s appointment with YAS (Yet Another Specialist) sparked a small and unexpected revolution in my head. It was a teeny, tiny spark, but I am beginning to think it was more significant than I realised. Let me explain. This particular specialist had earned my undying gratitude by coming in on a Saturday to give me an appointment two months earlier than his waiting list would otherwise allow. I was disposed to adore him before we met.

Nonetheless, when he opened the door, he greeted me with “Linda, is it? I’m Dr Thingy*.” I introduced my husband and we sat down in the waiting room to fill out the obligatory forms. I carefully filled in “Dr” where it asked for my title. I worked hard for that PhD, and I like to have it recognized, but it’s particularly useful in medical situations. Even though I don’t have a medical degree (and never pretend that I do), I like to establish that I am a trained scientist and I can handle technical terms. I like to be taken seriously. I shouldn’t need a PhD to be taken seriously, of course, but the truth is that it does tip the scales sometimes.

I’ve always called doctors by their titles. Well trained by my doctor father, and also of a respectful and somewhat conservative bent by nature (20 years on I still find it hard to call my school teachers by their first names), it comes more easily to me to call a doctor “Dr Thingy” than “Jess”, even though many doctors now introduce themselves by their first names.

But even the doctors who hide behind their titles and surnames like battle armour always, always call me by my first name. And it suddenly dawned on me that using surnames and titles reinforces a psychological distance and a power relationship that might not be in my best interests. As a patient I have always had an irritating tendency to want to understand my diagnosis and make decisions about my own treatment. It drove my dad nuts, but I stuck with it. It took me a while to get to this point, but now when I encounter a doctor who isn’t comfortable with me making the decisions, I dump them post haste. This is my body. This is my health. This is my responsibility. My doctor is a partner in my quest for better health, but she can never, ever be in control.

Astute regular readers may have detected a touch of the control freak in my approach to the world, but I think this attitude transcends a mere personal tendency. For too long, some health professionals have treated their patients as devices to be fixed at worst, as naive children too young and ignorant to know what’s best for them at best. Either way, patients taking charge of their own health are not a welcome development in such cases. Here the battle armour is crucial to reinforce their supremacy and control. “I’m Dr Thingy. You’re just Linda. I’m the expert. You do what I tell you.”

To be sure, sometimes there’s a fine line between making your own decisions and ignoring expert advice in favour of quackery. I’m well aware that many anti-vaxxers believe they are making informed decisions. But it is rare that any condition has only one possible treatment, and extremely rare that treatments are without complex consequences. There are always choices to be made. There is quite a lot of medical literature documenting the fact that patients who inform themselves and take equal roles in their own treatment have by far the best outcomes.

Recently while in hospital I was told I needed a test I had already had – even though I had mentioned the results of this test to 3 separate doctors during this visit. I told them again, and repeated the date of the test, and they agreed it was unnecessary. This test was going to cost me around $400, but it was harmless (if rather unpleasant). No harm would have been done if I had allowed it to proceed, except to my bank account. A few weeks later I got a letter telling me when my appointment for the test had been scheduled! Now imagine it was a drug I was on that had not made it onto my file. Or a life threatening condition. These mistakes happen. Imagine, then, if I was put onto a drug that would interact with something I was already taking, and I didn’t question it, because my godlike Dr Thingy is the expert. He knows what he’s doing. He’d be offended if I questioned him!

It happens. It nearly killed a friend of mine a few years ago, in fact. After that he got kind of stroppy and started to push his doctors to explain and justify themselves, and his healthcare improved immeasurably.

I can’t help feeling that the best and most productive doctor-patient relationship is one of mutual respect. So if my doctor calls me Dr McIver, I will happily call him Dr Thingy. But if he’s going to go with first names from the start, then I think it might be important to put myself on an equal footing, both in his head and in mine, and just call him Fred. After all, we’re in this together.

*Not Whatsit’s real name. I should also add that the real Dr Thingy’s attitude has been fabulous, and he has not exhibited any of the issues discussed in this article. :)

Hoping for the worst

On Monday I hope to get test results that tell me there is something wrong with my daughter, Jane.  That wasn’t a typo. I don’t want to hear that there’s nothing wrong. I want to know what the problem is. Most people who hear she is having a gastroscopy say “Oh you poor things. Don’t worry – I’m sure they won’t find anything!” It is difficult to explain why this is such an appalling prospect, without ranting for hours and beginning to foam at the mouth. (You have been warned.)

You see, I know there is something wrong. It has taken me most of her 3.5 years of life to persuade various members of the medical profession that something needs to be done. She is not underweight, although she’s far from porky. She has fallen from the 90th growth percentile to the 50th, but that’s not particularly alarming (unless you look around at her parents and sister, all of whom tend to make giraffes look a little runty). She is a picky eater, but that can be said of many 3 years olds.

Recently she has developed into a tanty monster of extreme proportions, coinciding with significant sleep problems. Again, this isn’t terribly unusual when you’re 3, and her sleep has always been appalling. She is dairy, citrus, tomato and wheat intolerant, and suffers from silent reflux, but since she is not horribly malnourished, the standard position on that seems to be “she’ll grow out of it”.

Really, there are no obvious, objective signs, like massive green spots on her forehead, that I can point to and say “Look! You can see the problem.” Nonetheless, there is a problem, and I am so tired of tramping from gp to specialist, gp to different specialist, etc ad nauseam, without finding anyone who will take it seriously. It took us until she was 2 to get her reflux diagnosed in the first place. In the end we got desperate, gave her half of an antacid tablet and had the best night’s sleep we’d had since she started on solids. (Never mind the ensuing panic when I realised that those tablets are not for the under 6s!) Then we went back to the gp who put her on reflux medication, and things improved. But they were still very patchy. Better, but still not good.

Apart from the sleep deprivation, the worst part was that Jane’s normally sunny, laid-back personality became ever more clingy and withdrawn. It was heartbreaking to see. In those rare times when the reflux meds were really helping, she was a different child – happy, outgoing and relaxed. When the reflux gets the better of her, which is most of the time, she is miserable, frustrated, distressed, and incredibly shy and clingy.

I am stubborn, highly educated and medically savvy, and I have battled to get answers for our family. How many families are suffering because they can’t get doctors to take them seriously when they say there is something wrong? If I had believed every doctor who said “it’s behavioural” or “there’s not a problem” or “she’ll grow out of it”, I shudder to think what hell we’d be occupying today. Here’s the thing. I know my child. Don’t tell me I am imagining it, or it’s just a phase, or any other patronising platitude.

Recently, we were very lucky. Jane’s reflux got worse. She had a mild gastro, and then suddenly her vomit contained “coffee grounds”. I’ve no idea how I knew that this meant there was blood in her stomach and needed to be taken seriously – presumably I had read it somewhere during my endless researching of reflux.  Regardless of how I knew, it’s very lucky that I did, because although she was diagnosed with gastritis and a short term increase in her reflux medication fixed that problem, it meant that we now had medical proof that something was not right in her digestive system. And we had it in writing, in the form of a report from the hospital emergency department.

Finally people started taking us seriously, culminating in this appointment for a gastroscopy on Monday. There is a long list of things they are looking for, and they are all treatable. I don’t care which one they find, I just want an answer, and a way out of the misery and sleep deprivation of having a chronically ill child. I want her sunny nature to be able to flower unchecked. I want her to be able to sleep peacefully, eat healthily, and have an easier life. Naturally I want all that for the rest of us, too! So I am hoping for the worst. Cross your fingers for us!