Woo By Association

It’s possible that, with a PhD in genetics, I consider myself to have more than dipped my toes in the streams of science. As a person with two chronic illnesses (and that’s not counting endometriosis: I’m fortunate that it appears to have been resolved via laparoscopic treatment), I am a hearty and enthusiastic fan of evidence based medicine. I believe in expertise and expert advice.

As a person who has had a slew of sub-par doctors and who now has an excellent medical team, I also know that sometimes expertise is no defence against error, oversight, dismissal and short-sightedness.

For example: a patient presents with recurring peri-anal abscess. She’s been hospitalised for them several times, since the age of fifteen. They’ve been resolved and surgically. They keep occurring in slightly different locations. Do you…

a) diagnose her with hidradenitis suppurativa without a dermatological consult [edit: would have said “this is not HS. I have seen HS. This doesn’t look remotely like HS.”] and just say “oh well, sucks to be you, come back if it happens again and I’ll give you horse-pill antibiotics” (note: the horse-pill antibiotics do work if they get in soon enough, so no disrespect on that point)

b) order an endoscopy because perianal abscess is strongly associated with Crohn’s Disease and we should probably rule that out?

If you chose (a), congratulations, you’re the doctor that makes my current specialist and GP make faces and try so very hard not to say “that guy was a fucking hack.” (note: all the GPs and specialists I have seen have been way too professional to say this, but even a spectrum lass like me can read the facial expression that means “HE FUCKING WHAT?!”)

A patient presents with sudden onset pelvic pain and breakthrough bleeding between periods. Yeah, she has kind of unpleasant periods but sort of thinks it’s normal and shrugs helplessly when you ask how much pain she has because – naturally – she has no basis for comparison. You rule out urgent things like tumours, STDs and ectopic pregnancies and try to perform a Pap Smear, but it’s too painful to get it done. You order an ultrasound for PCOS and sub-acute appendicitis which comes back inconclusive. You refer her for possible PID, which comes back clear.

Do you…

a) continue to suspect possible sub-acute appendicitis – which is unlikely to show up in an MRI – and send her for an MRI, and when that comes back negative, diagnose her with severe constipation, give her Fleet and lactulose, and tell her she’ll be spending Saturday night at home within six feet of her toilet?

b) mention that endometriosis is a possibility, since it affects an estimated 10% of women, and while it’s a diagnosis of exclusion, it might be worth getting it checked out?

If you chose… (a)… good work. You’re that guy again.

A patient presents with overwhelming fatigue. She says she needs at least 10 hours sleep a night or she’s useless. Do you…

a) ask whether the medications she is taking might cause fatigue?

b) Order a fatigue panel (liver function, thyroid function, B12, iron, blood count, CRP, vitamin D, etc.)?

c) Tell her that some people just need a lot more sleep?

In this case, if you chose (c)… HI YOU ARE THAT DUDE.

This is going to sound like doctor bashing – and wow, actually, it really does. I’m not a doctor. Not even close (a PhD in genetics and marine biology does not qualify me). To be fair, the first scenario speaks to two doctors I’ve seen. The second is a merge of about three doctors. The final one isn’t even mine, it’s something a friend of mine dealt with. I can come up with more.

Doctors have a fucking hard job. The human body is fabulous, but in the immortal words of Doctor Gregory House, it’s also really stupid. There are so many things that can go wrong with it, and they’re confusing and interrelated because biology is the most inconsistent and wacky of the sciences. I’ve learned on my trip through diagnosis roulette that diagnostics is hard. It’s really, really hard. The first line diagnostics for Crohn’s Disease failed me – they came back negative or just slightly weird. I was fortunate in that I had a specialist willing to take my word for the pain (and who also thought that the number of abscesses I had was just profoundly stupid) and keep searching. I actually have an enormous amount of sympathy for some of the doctors in this scenario. I’m only genuinely angry at one of them. This disclaimer is really important to me.

Because in spite of the last (pause to check stats) 750-odd words I just wrote, I actually am probably going to side with the medical community in most cases. It’s easy to get it wrong. It doesn’t mean they’re incompetent. It means mistakes happen. Even the wrongest (no, that’s not a word; yes, I’m going to use it anyway) of doctors knows a billion times more than I do about the human body and human medicine. There’s only one relevant area where my knowledge exceeds theirs, and that’s my own perception of my own symptoms.

And even then, that’s iffy. It’s subject to the placebo effect. It’s subject to the nocebo effect (the opposite deal. Also fascinating, and a good deal more frightening). It’s subject to confirmation bias. It’s subject to reversion to the mean. There are so many ways that my own perception can’t be trusted. Statistically, I should consider myself a data point, and I should consider that my health will behave according to those statistics.

I’ve written about expertise before. Mostly, I stand by those words.

But there are areas where I don’t – and that’s where this post comes in, and where the title comes in. For example, I think paleo is based on some profoundly appalling ideological scaffolding. I also think (as explained in that linked post) that there are reasons that some people feel better on it, and that they aren’t necessarily ascribed to a placebo effect.

Before my (very awesome and kind and hilarious) GI doc said I probably had isolated small bowel Crohn’s, I’d pretty much concluded that was what was going on. I needed a push from that dermatological resident who took one look at my abscess site and said “dear god, you do not have HS. How long have you been told that’s what you have?”, but from then, the evidence began to snowball. I searched and searched and trawled the medical literature (reading outside my field is daaaaaangerous) for links and indications.

The thought that I had endometriosis had never occurred to me, for different reasons: menstrual pain is dismissed. We’re told menstruation hurts. We expect it to hurt. Some say it’s not worth complaining about. Some are bedridden. We have no way to know the relative severity of our experiences because pain is profoundly subjective. So I didn’t self-diagnose that one – a resident at the Mercy Hospital told me that was what she thought was going on, after a negative finding for PID.

I needed a push with hypermobility, too. A physio said that I was crazy hypermobile, and I looked into it, and ended up with a self-dx of Ehlers-Danlos. I’m booked in to see a specialist to talk about my possible EDS-related low blood pressure and related fatigue, because my reported symptoms of bendiness and dysautonomia were enough to triage me into a profoundly overbooked clinic.

There are so many GPs who would look at this and say “OH GOD. GOOGLE UNIVERSITY. THE FUCK IS WRONG WITH YOU.” And that’s entirely fair. That’s the problem. It is realistic to be concerned about people trying to diagnose themselves. There’s nothing particularly special about me that says I should get away with this bullshit when other people get smacked down for it, except that I have a PhD in the biological sciences and so I’m a bit more critical of my source material. I look like a hypochondriac – except I keep getting tested.

And… I keep being right. I’m not learning the right lessons here, because I keep. Being. Right. I can’t placebo myself into low iron, or inflammation and ulcers in my small intestine. I can’t placebo myself into dysautonomia (or… can I?) and soft tissue injuries (although I’ll be brutally honest: you probably can placebo yourself into low blood pressure. I’m not sure whether that would be orthostatic hypotension or low BP across the board, but I can see it working).

This brings me around to the woo side of things. I would say I’m pretty anti-woo. I think homeopathy is so profoundly bad and stupid that it would be hilarious if it weren’t so dangerous. I can’t believe the shit people feed themselves to avoid Big Pharma (you know, the Big Pharma that tests and refines things so that you get a predictable result – even though, of course, Big Pharma is profoundly problematic in so many ways. Nothing is all good or all bad, hmm?). I am almost militantly pro-vaccine. I am pro-choice in a balls-to-the-wall kind of way.

But I eat a ketogenic diet. And, as a friend recently pointed out to me, when you try to research keto, you end up surrounded by the world of crystal healing bullshit, and there’s guilt by association. Fucking Pete Evans is in favour of very low carbohydrate diets, and I think that guy is dangerous and wrong in so many ways.

I’ve described my keto as medically indicated. It is. When I confessed (really really nervously) to my GI doc that I eat a low carb diet, and in one rushed horrified breath explained why I did it and how I managed it and how long it took me to get it sorted, he backed me up. He said, “Don’t worry, you are doing the right thing.” The tension disappeared from my hunched-up shoulders. When I told my GP, she frowned a little and looked at my lipid panel and said, “Look, you have the best HDL/triglyceride ratio I’ve ever seen. I actually don’t know much about keto diets, but this is clearly working for you. We’ll keep monitoring. When it’s not, I’ll tell you.”

When I eat keto, as I’ve said elsewhere, I feel much better. My resting heart rate is lower . I stop developing thrush (TMI! Ah, too late). I don’t bloat and fart so much. I’m in much less pain. I have more energy. I feel less nauseated. I don’t feel hungry and sick all the goddamn time. My fasting insulin went from the pre-diabetic state down to almost normal and then down to barely detectable as my carbohydrate consumption dropped. I can eat breakfast, feel fed, and move on, instead of cramping and nausea.

(sidebar: I do actually still have some cramping about 20-30 minutes after eating breakfast, but it’s much less severe, and a lot of that is probably the fact that I still have Crohn’s, and putting food in my small intestine hurts, because my small intestine is inflamed and has ulcers, and it doesn’t matter what I eat, that’s always going to suck)

I get less abscesses. Which means less surgery. YES. My diet means I can have less surgery and I think that is fucking important.

There are downsides to keto. SO MANY DOWNSIDES. I have some spectrum sensory processing issues, which mean I can’t eat salads or many veggies, so I try to cover my bases by taking multivitamins (I take prenatal, partly because I was going to try for a kid before I ended up on teratogenic medications, but also because Surgeon Sam wants me to get more folate as a Crohnie. We sometimes don’t absorb folate well and need to supplement). Keto means low insulin, which means your kidneys dump water and salt – so I have to drink more water than most people, and I also have to supplement salt to avoid cramping and headaches and irritability and fatigue (hey, if you’ve ever gone low carb and had those symptoms? Please smash more salt). Keto means not having some of my favourite foods – and I love food. I am a pastry elemental. Keto means reduced explosive power – the metabolic pathway employed in a ketogenic metabolism is much less efficient than a glucose-based metabolism and it makes some of my favourite activities, like running and rock climbing, more difficult.

Keto is work. It’s maths. It’s weighing and logging to make sure you’re not over-carbing, or even over-proteining (yes, that’s a thing). It’s trying to figure out how to get more calories in the form of fat without overdoing the other macronutrients. It’s wanting to scream at another supermarket aisle that adds Healthy Wholegrains or More Sugar to some delightfully Low Fat products that you don’t want and don’t need, and yes, I would prefer artificial sweetener to sugar, because aspartame and sucralose and erythritol and sorbitol won’t make me nauseated or give me thrush and sugar fucking will.

Because my small intestine is damaged and doesn’t absorb sugars properly (it’s called “secondary carbohydrate malabsorption” and happens to some Crohn’s people).

But the diet is medically indicated. I need to be on it. I can take breaks from it – I frequently do. Sometimes it’s for my own mental health, because I don’t have the spoons to plan food and I just need to fucking eat something. Sometimes it’s because I’m holiday and travelling and it’s just too hard. As long as those breaks are pretty short (<2 weeks) and don’t happen too often, it’s manageable. I went off keto for a month while I was at sea last year and… there were consequences.

Here is – finally – where the threads of this post come together.

I figured out keto myself. No-one told me to try it. No doctor or nutritionist or dietitian said “Hey, drop the muesli.” I noticed a pattern, that the lower and lower GI my food went, the better I felt. I noticed that it would work for a while, and then I would feel sick again. And I looked into it and said, “You know. Fuck it. Let’s try this. We’ll try it for a few weeks and see if I feel better. I absolutely reserve the right to kick it as soon as it sucks.”

But I knew this was a big change, and that it could affect me badly, so I wanted to make sure I was ready for it all.

I researched everything. I learned about salt. I learned about the difference between monounsaturated, saturated and polyunsaturated fats when it came to muscle membrane interactions and insulin sensitivity. I learned about adaptation, how long it would take, how shitty I would feel, and how important it was not to interrupt it. I learned that keto isn’t just “another diet”, but that the ketogenic pathway is a separate, liver-intensive metabolic pathway that focuses on mobilising fats (which is why interrupting it is bad. The minute insulin spikes, ketone production stops, and you’re back on the glucose pathway for a while until it subsides – which can take days). I learned that your brain can feed on glucose and ketone bodies but not on fatty acids, and that’s why if you go low carb but not low carb enough to produce ketone bodies, you get brain fog and “bonking”. I learned how keto would affect my exercise plans and successes, and that I would basically be retraining my cardiovascular fitness to deal with it (oh god. OH GOD). I read and read and read.

And I critiqued. Because fuck, there is a lot of really, really good science about keto out there. There’s a lot of good biochemistry. There’s a lot of good sports science and dietary information. And there is an absolute bucketload of crazy bullshit. It’s heartbreaking.

It’s heartbreaking because every time I have to tell someone I eat “very low carb”, I tense up, waiting for them to give me the side-eye and either imply or say outright that I am so full of it. I don’t want to say “I’ve done my research!” – even though it’s true – because that is what anti-vaxxers say and they are not immunologists and their wrongness is so profound and so absolute that it literally kills babies. What makes me different? What makes me any better? I mean, if I’m wrong about my diet, no children are going to die from whooping cough, so that’s a win right there.

It’s heartbreaking because I’m not trying to convert anyone to keto. I genuinely think that some people would feel better on it, that some people could take it or leave it, and that for some people it’s not a great idea (psychological factors are important here. Keto is a great window into orthorexia if you’re at risk of that, and you need an eating disorder kind of like you need a hole in the head). Because nutrition and metabolism and dietary tolerance is extremely idiosyncratic. It comes down to gut flora and various organ functions and health and a whole shitload of other factors that I do not understand. The only blanket statement I could offer is that, if you’re pre-diabetic or have type II diabetes and are even remotely interested, it might be worth a shot. But ask your doctor! Unless your doctor doesn’t believe it’s possible to do keto in a healthy way, in which case, you’re kind of sunk, because it is factually possible to do keto in a healthy way, it’s just that most people don’t know how, or won’t put the effort in, and will just start eating a lot of bacon and wondering why they feel sluggish (sidebar: bacon is awesome). You want a doctor who knows it can be done, but might have more insight into whether or not it is a good idea for you, who is willing to work with you and monitor you, and who will tell you when it’s not working for you – “You tried. Fair play. But no, let’s stop this.” Or who will tell you when it is! “This is going really well. Keep it up. Maybe we should fine tune the kind of fats you’re eating, or the salt.”

You may notice that I have not at any point mentioned weight loss as relates to keto. The next three paragraphs are going to be about that, then I will not mention it again, so if that’s something that’s going to upset you, skip these paragraphs. I am mostly a Health At Every Size person. I don’t believe that being fat is necessarily unhealthy, although abdominal fat is not hormonally neutral, and if you’ve got joint problems like moi, less pressure on those is good – but then again, trying to lose weight long term is not something that seems to be possible for most people, and why beat your head against that brick wall when you could just do your own thing? So. (I would normally use more whitespace here, but I gave that paragraph warning, so I have to stick to it)

Keto appears to be helpful in weight loss for some people. The reason this works is two-fold. Firstly, keto is high fat. Fat is calorically dense, and really filling – even more so in people who usually eat high-carb, low-fat. So you will eat less food overall, which creates a caloric deficit. This one’s a bit of a no-brainer. When I first started keto, I had real trouble eating enough food.

Secondly, keto means that your insulin levels drop, because your body isn’t busy dealing with blood sugar (which always takes priority, because high blood sugar is super toxic). So suddenly, fat metabolism is much easier and your body can devote more time to it. Instead of just shunting fats into storage to be dealt with later, they get rolled up into ketone bodies and actually used (I am taking some artistic license. I don’t think these are actually like fruit roll-ups). We can store a lot more fat for energy than we can glucose. If we become very efficient at fat metabolism, it’s a very even and useful energy source for sustained work (like long-distance running. Not sprinting). If you have insulin resistance (as I did at one point, and my insulin response is probably still a little borked), your background levels will be high enough that you’re just not mobilising fats properly. They get shunted into storage, and can be even if you’re eating at a deficit. People who are severely insulin resistance have a huge problem in this regard. They can be really hungry, and a lot of the food they eat just won’t get used, and they do need to eat more, and they will still gain weight. This does not violate thermodynamic laws in any way. It’s just that metabolism sets ground rules that your body will follow. I am hoping not to start any fights with these paragraphs, but I just really don’t want people to be given shit for being blasted with horrible fat-shaming treatment when they are legitimately hungry people trying to take care of themselves and live their goddamn lives. So that’s why I bothered to write these three paragraphs. Now we’re done. Your three paragraphs about body size shit are over, we are safe now.

So when I start looking up keto recipes and end up finding some woo-bullshit, I get a bit sad, because it just makes the rest of us look like idiots. When I read some article about how KETO IS SUPER DANGEROUS Y’ALL THIS WOMAN GOT OSTEOPOROSIS I just want to bang my head against a wall, because… you can have dairy on keto, just not bucketloads of milk. Calcium is still important. Proper nutrition is still important. You can get the things you need without carbohydrates (and if anyone wants to do their “aha! Checkmate! Cells need glucose, noob!” I’ll remind you that your liver is perfectly capable of manufacturing glucose from protein. It’s called gluconeogenesis. Move on from that one). So yeah, you can be malnourished on keto, like you can on any fucking food, if you don’t know what you’re doing.

When I read about how “Moderation in all things is important!” I just want to sigh, because you can’t actually do keto in a moderate way. Keto is, by definition, extreme, and extremes worry people – with good reason! But if you try to low carb in a moderate way, you’ll “bonk”, because your brain needs glucose or ketones, and if you’re getting enough carbs that you’re not producing ketones, but not enough carbs to feed your brain… fatigue. Brain fog. Just… don’t.

When I read about how keto will cure cancer, I almost want to vomit because… no. Just. No. It will not. Ever. Please don’t do that. That’s awful and irresponsible.

Guilt by association – or, rather, woo by association – pisses me off. It’s like people who ruin the benefits of physiotherapy by confusing physios with chiropractors (and yes, there are good chiropractors who don’t believe stupid woo, but it is much simpler to find a good physio). Or who decide that dry needling works so therefore the ancient wisdom of acupuncture is ALL TRUE. Or who notice that pharmaceutical companies are sometimes corrupt and publish their results in unethical ways and then decide this means that… medicine is bad and they should take ginseng or something. No. Noooooo. Shit is complicated.

There is a huge amount of inertia when it comes to finding out what works – and mostly that’s a good thing. We should be skeptical. There’s a tendency to diminish people’s self-reported successes – and that’s understandable too, because the placebo effect is powerful and real.

How do we walk the line between finding out what works and accepting that some of these things are enormously variable between individuals? How do we create a world where I can say “I eat keto” without someone wanting to shout at me about healthy whole grains and me wanting to slap them in the face with my lipid panels (and by the way, lipid panels are also not the be-all and end-all and that is another entire rabbit hole of crazy)? How can we find a balance between listening to people’s experiences, and also trying to apply evidence based systems that seem to work for the majority?

I don’t have an answer. I honestly don’t know. I find a real conflict in myself between my earnest desire to trust expertise and throw myself on the mercy of my specialists, and the realisation that I took a pretty giant nutritional leap off my own non-expert bat and found myself in less pain, needing less surgery, and less clotrimazole. I don’t know.

There are no simple answers. There are never simple answers. Sometimes you just have to tug at the strings and see where they end up. Just… try not to assume someone’s being an idiot because you associate something they’ve said with something stupid. Leave the door open to find things out in your own way, and leave it open for an expert to walk through it and talk to you about it as well.

If we need moderation in anything, perhaps that’s where it should go.

[Edited to add this postscript. A friend reminded me that my road to keto was even more haphazard than that, so, in précis: I was told to eat a low glycaemic index diet for my acne, on the theory that it might help with the hidradenitis that I later turned out not to have. This helped. Then eventually I got tested for fructose malabsorption after two other friends shared some TMI symptoms that sounded very familiar. That came back positive. So then I gave up wheat (which contains fructose, but crucially was my primary source of dietary carbohydrate) and reduced sucrose (because that contains fructose as well). Things got better, but then plateau’d. I briefly flirted with paleo before I learned that gut enzymes actually evolve really quickly and that there are more holes in that argument than in a good-sized block of Swiss cheese. That’s why I eventually noticed that trend of improvement regarding low carb. And then I read about ketogenic diets, and by that stage I was frustrated and grumpy and thought: what the hell. So that’s the story]



Sick But Not Sick Enough

I am both fortunate and unfortunate in the challenges my body has thrown my way. On the one hand, I have confirmed Crohn’s Disease of the small bowel and (semi-diagnosed) Ehlers-Danlos syndrome (hypermobility type). I have Seasonal Affective Disorder (I get miserably lethargic and non-functional in winter). I’ve had endometriosis.

These are not good things.

But on the other hand:

  • I am cashed up enough that we can afford tools to mitigate my S.A.D. (sun-lamp, sunrise alarm clock, redecorating to make house look bigger and brighter and so that more light reflects off surfaces, also going on holiday to warmer sunnier places in winter).
  • My endometriosis case fell into the two-thirds of cases that actually are resolved with a single laparoscopy. I no longer have symptoms.
  • My EDS is a moderate presentation (partly due to the fact that I was a sedentary kiddo and thus did not accumulate long-term connective tissue damage like a more active kid might have done. This is a feedback loop – moving was awkward and painful, which is why I was a sedentary kiddo…) so I can do a lot of things that more severe sufferers cannot. Even more, we’re financially secure enough that I can afford to work casual/part-time so that I have more time for the extra exercise and sleep required to manage EDS. And we can afford physiotherapy, clinical pilates, gym memberships, etc. without worry.
  • My Crohn’s Disease is solidly in the “mild” category. It’s only in my small intestine. It’s scattered. There’s little to no scarring, only limited narrowing, and no real risk of obstruction. I don’t have chronic diarrhoea. I don’t need a stoma. I can still absorb enough nutrients (not efficiently, but I can do it). Mild Crohn’s is still no picnic: I am in pain all the time when I’m not taking something to manage that pain, I have secondary carbohydrate malabsorption due to my inefficient gut, sometimes I feel nauseated after eating (less so when I’m on keto), and currently I’m dealing with monstrous fatigue issues possibly due to B12 absorption problems, but otherwise, I’m dandy.

Number four is the topic of today’s post.

Since my diagnosis, I’ve been on the following drugs to treat the Crohn’s (I’m not listing pain relief here. That’s a whole different post):

  • Budesonide EC/Entocort. This is a corticosteroid, much like prednisone, but with many fewer side effects because it is largely processed in the liver. It’s distributed through the lower small bowel, terminal ileum, and upper colon. These are the most common sites for Crohn’s to affect, and some of my inflammation sites are in that area (all in the ileum though, not the colon). I’ve been on the maximum dose (9mg/day) for over a year. Surgeon Sam thinks it’s not doing much, and he doesn’t want me on corticosteroids for no reason, so we’ve tapered that to 6mg in the last month. My pain seems to be worse though, so I will report back on that front.
  • Imuran/azathioprine. This is an immunosuppressant, also used to treat leukaemia. I took it for ten days and developed facial redness and scaly skin, which apparently means it’s a sign you have an allergy or intolerance and you can’t safely take it. Well, bugger.
  • 6-MP/mercaptopurine. This is the pre-metabolised version of Imuran. It’s associated with more side effects, but can sometimes be effective when Imuran doesn’t work or isn’t tolerated (the reverse is also true). I took this for about a month or so, and then it turned out I was producing nearly four times the level of toxic secondary metabolites that humans can tolerate. So I had to stop that one.
  • This is another immunosuppressant, but it operates along a different pathway to the other two. I had monster nausea the first time I took it, which is not uncommon, but as soon as I started smashing the supplementary folate, it went away. However, when I was away at sea for a month, I developed extensive and bizarre bruising. Now, I’m uncoordinated, and I was on a boat, and I’m also on corticosteroids (see (1) above) which can weaken capillaries a bit. EDS sufferers also bruise very easily due to our wacky collagen. Given these profoundly confounding factors, it’s not entirely certain that the methotrexate (or mtx to the in-crowd) was responsible for the bruising, but I was away at sea, so – via email – my surgeon advised me to stop taking it.

Right now, I’m taking a tapered dose of Budesonide and that’s it.

The Budesonide is not working. It barely takes the edge off. So, if I’ve tried Azathioprine, 6-MP and methotrexate, and none of those seem to be safe for me, what’s left?

Well, there are a few other treatments. Very powerful, scary, effective treatments.

It’s just that they’re also incredibly expensive. We are talking ludicrous numbers. Now, I live in a country with very good socialised, single-payer healthcare, and I’m used to benefitting from that. However, the budget isn’t endless, and Medicare (the Australian version) won’t cover these newer treatments unless you are very sick. Basically, my Crohn’s has to be much, much worse before I’m able to be treated with these medications.

It’s good that I’m not sick enough for Remicade. I don’t want to be that sick.

But I also don’t want to be untreated. Crohn’s Disease is a progressive condition. Even if you’re asymptomatic, it can progress and do a fair bit of damage to your digestive system (which is why “controlling it with diet” is a bit suss unless you’re also being regularly tested and checked out for inflammation). If I leave it long enough, I will get sicker. The inflammatory patches will spread. They will get more severe. The pain will get worse. I will develop other symptoms and side effects I currently don’t have to deal with (everything from internal fistulas and abscesses to painful skin rashes to gall bladder issues and even to bowel obstructions).

And then… then I’ll get treated.

At the moment, we’re trying to avoid that outcome. I’m scheduled for a ketamine infusion in ten days to treat my chronic pain (visceral hyperalgesia). I’ll be in hospital for a week. If that goes well (or even if it doesn’t), I’ll go and see Surgeon Sam afterwards, and we’re going to try putting me back on the methotrexate – only this time, we’ll be monitoring my liver tests weekly. This way, we should be able to work out whether the bruising was caused by the mtx or not. If not: sweet. I can stay on the mtx.

Hopefully, I can be on a medication long enough to find out if it’s actually doing anything, because there’s the possibility that mtx might be safe for me to take, but might also not effectively treat the Crohn’s.

One sad undertone to all this is that I really would like to have a kid at some point, and Budesonide is a teratogen and methotrexate is an abortifacient. So my only real hope of doing that is to get into remission and go off the meds. It’s possible. My Crohn’s is mild, and remission is definitely achievable.

Right now it’s a frustratingly distant possibility. I’m 36. I haven’t got forever.

Confessions of a Language Pedant

Above all else, I prize precision and clarity in communication. I delight in capturing an experience verbally in a way that makes sense to me. I am horrified by imprecise, confusing language. My head aches and my stomach rolls when I try to untangle twelve line sentences filled with an excessive abundance of dependent clauses (there’s a reason I only studied law for one semester. I’m convinced judges don’t know how to end sentences, so they just keep going and hope nobody notices).

I used to prize writing my texts and emails and social media updates with the same sort of language I use in my blog, in fiction writing, in scientific writing, in academic essays: expressive and precise. I can never quite manage concise, but I take precise to be a requirement. I would use full stops. I would capitalise appropriately. I would not use “weird, made-up words”. I would cast severe shade on people using “u” and “ur” as actual tools of communication.

I’m over it.

Over the last ten years or so, I’ve witnessed the same thing so many have: the rise of a multitude of technology-inspired dialects. First inspired by slow typing and awkward phone keypads (remember having to press a button three times to get the letter you wanted?), and then spreading like wildfire when smartphones appeared. Perhaps the typing got easier, but by that point we were used to the shorthand.

Pundits opined the decline of literacy, and while on the one hand I felt a bit confronted by this new vowel-reduced stream-of-consciousness, I also felt that this was – to put it bluntly – a bit of a pointless wail. Rapid communication in one form does not in any way preclude being able to write precisely in another. If I say “I’m gonna lose my shit” aloud, it doesn’t mean I’m unable to write “I’m actually getting quite angry,” should I need to communicate more formally.

It took a little longer for me to pick the other problem: there’s a huge amount of privilege in being able to correctly and precisely employ standardised written language. A good amount of it is class privilege (education-based); some of it is able-bodied privilege (it is very hard to take time to type accurately on small phones if you have, for example, crippling joint pain in your fingers; and it is hard to mentally structure sentences if you have chronic pain affecting your concentration; not to mention learning disorders).

Did I really believe that those people who didn’t have access to my advantage – not the least of which was my ability to absorb language and grammatical rules like a goddamn sponge from a ludicrously young age – had less of a right to be heard?

No. No, I did not. For a little more effort, I decided, I could translate some confusion in punctuation and capitalisation (although I have trouble when people use giant walls of text. I can’t parse that. My brain has its own quirks that require a bit of kindness, and one of those is a desperate need for whitespace. In the absence of whitespace – that is, appropriate use of paragraph breaks – I get completely lost).

There are certainly limitations. Punctuation and capitalisation exist for a reason – the sentence structures of English can be extremely convoluted, and common examples (such as “Eat, my children!” vs “eat my children” and “helping my Uncle Jack off a horse” vs. the alternative sentence without capitalisation) readily highlight the problem. We’ve standardised the written language for a reason, and the reason isn’t to be a complete snob about grammar: it’s to aid in communication and understanding. And yes, I get very twitchy about inappropriate apostrophe usage (or lack of apostrophe when needed), but I have learned to just quietly correct them when reviewing papers and move on.

It is all very context dependent. Certain modes of expression are hilarious on Twitter but useless in a formal email. If my friend texts me “so fkn drnk” I know exactly what she means – and even, to an extent, can read a mood through the sort of text dialect she’s using – so I don’t care. At the same time, I’ve read text messages from employers that make zero sense due to their inability to figure out how to insert a comma, and emails from other employers that sound like they’re shouting at me because they are so internet-clueless that they don’t realise USING ALL-CAPS IS ACTUALLY VERY RUDE.

There is still a value to standardised, precise language. At the same time, and to use a bit of a hackneyed phrase, language is a living thing. It evolves, and it does so rapidly. Whether social media has accelerated the pace of that evolution or whether it’s simply accelerating the geographical spread of those changes is a question that I’m not in a position to answer. I’m not saying anything new here: numerous people have come to the same conclusion.

One very important example – at least as I see it – is the use of the singular “they” pronoun. Far from people whinging and wailing about the grammatical awkwardness of it, it seems to be that it is less of an imposition on standardised language than the rate at which we currently generate new words, the rate at which we “verb nouns”, to the point where people honestly have entire conversations in meme-speak and emojis (I do love a good emoji sentence. It appeals to me on a very basic level. I find it inherently hilarious, because it subverts expectation).

Add in other people’s preferred pronouns – be it xe, ze, etc. – and I’m now just starting to think of them as little sub-names, not too much different from a prefix or a suffix. It’s not so different from the fact that I’m technically called Doctor in some contexts, and Ms in other contexts, and I have the luxury of a nice, easy, binary pronoun: she/her (good morning cis privilege, we haven’t spoken today!). It’s a little identifier. We can change our names. Why shouldn’t we have some say in our other identifiers?

What I’m trying to say is that the labels we give ourselves, the labels we give each other, the labels we give things out in the world, and the way we structure our communications – these things are always in flux. They have always been in flux. Somehow, the human animal manages to keep up very well. Throw us a curve ball in language, and we might blink and scramble a bit, but generally speaking, we’ll catch it. Everything from management-speak to strange shorthand (“totes”) to combined words (I’ll bring up “chillax” as an example, even though that’s one that I actually can’t get behind. Some people hate the word “moist”; I hate the word “chillax”).

Picking one thing to get upset about – over all the other shifts and changes we just take in our stride daily – seems like it has deeper meaning. Sure, there are certain kinds of dialects we associate with certain traits – I’ll never be able to convince some people that use of the phrase “going forward” or employing “action” as a verb doesn’t inherently mean that person is a wanker (I actually find them useful shorthand, and I don’t manage anybody).

But we need to move beyond this idea that incorrect grammar or punctuation means someone is somehow deficient in understanding, or that they don’t deserve to be heard; we need to move beyond this idea that the language we have now, or that we had yesterday, or – to be more specific about how humans actually work – the language we had when we were learning language ourselves is somehow the ideal Plato’s fucking cave language and that all subsequent changes to language are a corruption of the glorious ideal.

We need to remember what language is for. It’s for communication and expression. It can be beautiful and wild and precise and reasonable; most importantly, it is for making yourself understood and for understanding others.

Speak. Write. Be heard. Use the dialect that makes sense to you. Make yourself understood. Have patience. Embrace the change – because you’re not going to be able to stop it.


Gotta Die Of Something or “Quality of Life vs other Quality of Life”

(note: apologies for the long gap between posts. I’ve been overwhelmed lately, but I have so many ideas and also personal updates, so I’ll catch up, I’m sure!)

I was born at the very start of the 80s, the height of the low-fat and jogging obsessions. The adults in my life were profoundly scathing of “wankers” who cared about health, seized on any vaguely fluffy research that declared red wine was good for you, and loudly proclaimed that one had to die of something (while, by the way, being very anti-smoking and anti-drugs, based on their own personal experiences).

This attitude has waned a little (along with the low-fat obsession, and thank fucking god for that one) and it’s a little less prevalent, but now it emerges in a different way. It feels like there’s a constant tug of war between the gluten-free-meditate-yoga-wellness crowd and the oh-for-fuck’s-sake-you-tosser crowd. I admit, I don’t have a huge amount of patience with the former, because a lot of what is promoted isn’t actually supported by science, and I don’t want to waste my time and money.

(Note: yoga, when performed correctly, seems to be very good for muscle development, balance, mood, flexibility and strength. It does not – as some of my yoga instructors have claimed – balance my pituitary gland. In the same way, a good chiropractor can help ease back pain. They cannot cure or prevent viral disease.)

But I’m not entirely sure I have a lot of patience for the second crowd either. I’m not talking about people who have just decided what matters to them and what doesn’t. That’s what everyone has to do. No, I’m talking about people who feel judged the minute you excitedly share that you got a personal best at the gym (and I don’t even mean when you talk to them directly), or that you’re excited about a new low-carb recipe.

This is the “You gotta die of something” and the “Who wants to live forever anyway” and the “you won’t live forever, it’ll just feel like it” crowd.

I’ll take “Appalling Logical Fallacies and Over-Simplifications” for $500, Alex.

The amount of time and money I spend on my health is legitimately ridiculous. I’m exercising constantly. I run 2-3 times a week. I lift weights at least once a week (preferably more, but I’m having some scheduling issues at the moment). I go to clinical pilates once a week. I have a sports podiatrist that I see regularly. I scuba dive (although I could argue that’s a net negative for my health; another story). I go indoor rock climbing. I try to sleep a sensible amount (I’m so bad at this one right now). Most of the time, I eat a very strict low carbohydrate diet, in order to reduce the nausea and pain from Crohn’s. That means no sugar, no wheat, no rice, and almost no fruit. Sugar-free everything. I also take supplements, because it turns out that when your gut isn’t good at absorbing nutrients (thank you, Crohn’s Disease), and you’re required to cut a bunch of stuff out of your diet for various reasons, you miss a few things. Also, when you’re hypermobile, taking fish oil for your joints goes from “might as well” to “actually, you really notice when you stop.”

I’m that person who will occasionally order the almond milk decaf cappuccino and then add in two packets of artificial sweetener, because I’ve finally admitted that I actually don’t like almond milk decaf cappuccinos very much, I just want the psychological crutch of a “coffee” in the evening without staying awake all night and getting the gut discomfort of lactose consumption.

I turn down alcohol because my reaction to it isn’t worth it, 95% of the time. I don’t want to lose my entire next day to fatigue and sore joints.

I am, in the parlance of the adults around me when I was a little kid, a total wanker.

I’ve given up things I really love eating (not forever; I break keto for extended periods due to travel, and then I get to have pizza and almond croissants and yum cha and also feel very sick).

This was all my choice, but I sometimes feel taken aback when I end up talking to one of the “gotta die of something” crowd, because I always want to reply, “That’s true. How soon would you like that to happen? How much would you like it to hurt when it does? Do you want to be able to move in the meantime?”

I don’t reply that way. It’s more trouble than it’s worth, and it’s important to leave people to their own priorities and decisions. But I want to.

The fact is that I’ve given up some things, and forced myself to do other things (all that working out is time I could spend doing other things) and in that sense I’ve missed out on some fun. I’ve reduced my quality of life from that measure.

But in another sense, my quality of life is profoundly better because of this.

I can walk straight, now. Pilates has repaired my posture to the point where it doesn’t hurt to sit at a desk or go for long walks.

I can lift heavy things without whimpering. Basic everyday tasks are easier. Chores are less overwhelming. My energy levels are still profoundly shithouse, but I do have two chronic illnesses, so that’s not surprising. They are, however, better when I’m eating right and working out than the rest of the time.

I don’t feel sick all the time. I am in pain, but again: my Crohn’s Disease is not being effectively treated (that’s another whole story) and that’s an expected outcome.

I get less abscesses and less of certain other very unpleasant recurrent conditions because of the shift in my eating. I am less bloated.

I get less sugar cycling, less fatigue, less afternoon crashes.

I get less mood swings and less anxiety.

And I’ll take missing out on booze, on almond croissants, on office birthday cake, on indulgent take-away dinners. I’ll take that, because now I can move. In a way, I hate that it all works so well. I hate that exercise really does help with the pain and fatigue of EDS, and I hate that the diet mitigates my CD symptoms. It’s great that it works – because oh my, something that works? Gives me power over my life and my illness and my body – but I kind of wish it was a beat-up, and that I could stop doing it, because it all takes a great deal of mental and physical effort (and cash. Much cash).

The price is high.

The pay-off is so good.

I’ve decided that feeling awake and mobile matters to me more than those things I gave up. Most people I know have picked out their priorities, and decided that some things give them enough joy that the health costs are worth it – and I’ve made that decision for a few of my activities – while other things aren’t worth it, so they’ll take the hit there. This seems very sensible to me, because there are so many different kinds of quality of life. There are things that give you joy, and things that make you healthy and reduce long term pain, and most of the time in life you don’t have to decide between them; but sometimes you do.

And it would be nice if we could stop calling people wankers for making that call.

On the personal side? I struggle with smokers. My step mother died of terminal lung cancer, with six months from diagnosis to death. It’s hard to watch the people I love smoke. But when it comes down to it, that’s their call. They know. I respect the people I love. I respect their adulthood, their intelligence, their own priorities. They’ve made the call.

The hardest thing I find to deal with is where ignorance is involved (obviously, smoking is not a culprit here; everyone knows it is profoundly linked to lung cancer). People who don’t do what their physiotherapist tells them because they “get enough exercise” (and then wonder why they’re not getting better). People who don’t vaccinate because they think it causes autism (yes, being like me is much worse than dying of measles-induced encephalitis). People who don’t know that they should get the pain in that joint or muscle investigated, because it could be an easy fix and then they won’t have to deal with it any more. People who are bloated and complain of constant gut pain but won’t get checked for an allergy or an intolerance because they might have to give something up. That’s not an informed choice.

So yes: I struggle with this too. I want everyone to have all the information they need to make the choices that will make them happiest, whether that means giving something up or doing something extra to stay healthy, or whether it means deciding they can tolerate a risk or a discomfort because something makes them really happy. And it’s hard to get that information sometimes. Not everyone has a background in science. Not everyone has a fantastic medical team that they can trust to listen to them and tell them what they need to know.

And that infuriates me most of all.