Husband and I are in Thailand at the moment, decompressing and enjoying the tropical warmth and sun (from the shade. We’re a bit too pale to enjoy it more directly, especially my redheaded self). We just spent four days on a live-aboard diving tour of the Similan Islands (we went with Similan Diving Safaris and I recommend them without hesitation), and it’s hard to be back on land with no prospect of diving any time soon. Our resort isn’t really positioned for easy day trips.

Anyway, the important thing is that after twelve years of diving and about 270 trips beneath the surface, I’ve finally seen a whale shark. A little one.

Here’s the story of how that happened. I tried to keep it short, but you know me.

We did a spectacular dive on the Koh Tachai Plateau, and I was floored. It was breathtaking. Visibility for miles, clouds of hundreds and thousands of fish, so many species, so much to see that I didn’t even know what to write in my dive log when I got to it. We had a newish diver (about 15 dives, hadn’t dived in years, doing her advanced) and, as we all do at that point, she tended to gas out (erm, run out of air) pretty quickly. This meant that when she was ready to go up, I still had half a tank on a beautiful dive site.

That’s okay, the guide (Alex) had given me a spare SMB (surface marker buoy), and Michael and I are experienced enough divers that we could be left to our own devices. Unfortunately, Michael was having some nasty foot pain and wanted to quit so, sadly, I ascended with the group.

On the boat, I noticed that Alex was about to get back in. “Mini-dive,” he said, since he also still had nearly half a tank left (a bit less after ascent and safety stop). “Is that an option?” I asked. “Sure,” he replied.

I fished my dive computer out of the tub, unhooked the SMB and GoPro – it would be a short dive and I thought I wouldn’t need it – and we jumped back in for a short dive.

The site took my breath away again, and I followed Alex as we ambled around and explored, witnessed giant trevally hunting, and generally just had a grand time. I got down to my reserve (50bar), and let him know, so we began to head slowly back to the mooring line.

By the time we got there, I was at about… 35 bar? 30 maybe? My computer started counting down my stop, so I hooked my legs over the line (you can’t always do that, sometimes they’re covered in barnacles, but this was a clean one) and relaxed to admire the view.

The boss had brought his kids along, so I could watch them diving off the back of the boat and snorkelling (with the captain, who was also partial to a swim). The youngest boy waved at me, I waved back, feeling at peace with the world.

Then the call came out from the captain, who ducked down, pointed, and managed to shout underwater. I didn’t hear what he said, just the urgency of it, and both the guide and I swivelled our heads and turned. There were a few splashes over head as people grabbed snorkels and dropped in off the back.

I saw this distant, blurry shape. “It can’t be,” I thought. But it was! A whale shark came briefly into view – a mere glimpse, just for a minute, maybe less, and then disappeared. I figured that was it. The guide indicated he was going to go check it out, reserve be damned, and then the shark turned back towards us and swam directly towards me, where I hung, on the mooring line, now down to less than 30 bar in the tank, my safety stop timer having finished a little while ago.

It was just a baby, maybe 2.5m long at most, and a little shy. It came within maybe ten metres of us before turning sharply and sauntering back off into the blue.

The whole thing probably took less than five minutes, but I was high for the rest of the day.

So, I have been on 30mg Vyvanse for a whole (checks diary) four days. I was diagnosed with ADHD on Wednesday, and today is Saturday. Probably I should wait a bit longer before I deliver the truth bombs, since my brain’s response will adapt, but everyone is keen to know the deal, and I do have stuff to say already, so here goes (I can update as this changes).

Vyvanse is a slow-release version of dexedrine. It has a lysine molecule attached to it which apparently slows metabolism and delays the overall release and processing of the drug. Instead of getting a four hour effect and having to take three doses a day (which is what I would have to do on dexies), it’s supposed to last for 12 hours.

The actual studies report that it kicks in two hours after taking it and lasts for 12 hours, so there is a reported consistent effect from 2 to 14 hours after ingestion.

The downside (because I like to finish on a high note)

I metabolise things quickly. I always have. Painkillers and other drugs with a noticeable effect kick in sooner and taper off more quickly than expected. I get about two hours relief, max, from painkillers that are supposed to last for four hours. Alcohol hits me hard, but on the upside, I sober up very quickly (to the point that it confuses people who are expecting me to still be drunk). I wouldn’t test this by, say, trying to drive, but my impulse control and ability to make decisions after I’ve done this rapid sobering up trick are… pretty solid (as long as I haven’t completely destroyed myself, which I haven’t done in a very long time, since I decided it actually wasn’t fun; and last time I did, it was by accident! Long story involving my neighbour making me Long Island Iced Teas and having trouble with the measuring…).

So, what does this mean for Vyvanse?

It means it kicks in at about 90 minutes and it seems to drop off at about 9-10 hours after I take it. Which means I’m getting 7-8 hours of effect. Seems good, right? I mean, why complain?

Except that when it wears off, I drop into an anxious jittery mess. I get anxiety that lasts for about half an hour, and then after that I’m all twitchy and ADHD and can’t focus and Twitter all the time and what were you saying and brain fog and fuuuuuck…

So one of the things that I want from treatment is the ability to actually relax in my downtime: that is, to sit down, to read, to watch TV, to be present in the moment with friends, husband and self. I’m unable to relax when I’m being ADHD and it’s been a problem for a long time. The other problem is that most of the writing I do is done in the evening. That’s my writing time, my sit-in-the-snuggery-with-the-cats time. So I really, really want those extra four hours of Vyvanse effect.

What’s the solution? Well, it turns out this isn’t an uncommon problem, and some people only get four hours out of Vyvanse and crash MUCH harder than I do (so far; like I said it’s early days). I suspect (for reasons mentioned below) that my starting dose is too low, which would be quite common as well; but increasing the dose won’t increase the duration. I could split my dose throughout the day (they’re capsules, so it would involve dissolving them in water and leaving them in the fridge, which is hard if I’m at work and get home late). Or, if my dose went up, I could take two of these a day, which would be easier (although would require phone reminders – that’s okay, that’s already my life). Or there’s the possibility if an instant release (IR) booster, like an actual dex pill, to take in the afternoon. Apparently there are things I can do which might increase duration: eat high fat meals for example (HELLO KETO except I’m not keto at the moment because I ran out of spoons due to insane life, long story, and can’t get back on it until mid-May due to travel).

Obviously, I can’t really do any of these things without consulting my specialist, and the appointment isn’t for six weeks. I’m considering emailing her office with a short list of questions about what I might do in the meantime, but otherwise, I just have to tough it out and deal with the fact that life is going to be unpleasant at about 5-7pm (depending on when I take my meds).

The other downside there is that the Vyvanse wears off at roughly the same time that my body is about to call it quits. I have (suspected, probable) Ehlers Danlos Syndrome which includes (definite, absolute) hypermobility, which means that my muscles work twice as hard as everyone else’s do just to hold me up, so after a day of being me, I’m wrecked (not also: autonomic dysfunction, low blood pressure). Even with good sleep. Even with eating right. Those things help, but my body just… is done. My joints just can’t even. So around that time, having the Vyvanse wears off is kind of like being knocked over with a brick. I would prefer to have those things occur at different times.

The upside: this stuff is so fucking good

Here’s the positive stuff: the meds definitely work. I’m able to make decisions without panicking that I’m not making the absolute best decision and going over and over my choices (we’re talking “what to have at a café for lunch”). I’m able to be on time for things (well, I’ve done it once, but I’ve only tried once so far, so watch this space). I’m able to plan my tasks more effectively and accept that I can’t do everything because I’m more aware of time. I do still get stuck in loops with Twitter and so on due to indecision and executive dysfunction – which is why I think my dose is too low – but part of my brain is aware of it and it’s easier to break out of it.

Concentration

I read a paper yesterday, in the car (we’re on a road trip right now). I cheated a bit. I picked a paper on a topic that I’m very interested in, and that I don’t have any imposter syndrome or anxiety about (crinoid taxonomy. I’m very comfortable with crinoid taxonomy, it’s my jam). But even though there was a podcast playing in the background, and I occasionally got distracted, I was able to get through it (and as a bonus, found one of my papers cited at the end! Which was very nice and gave me quite a thrill). And I did have to reread some bits, and I did skip the species descriptions (although that’s my personal bugbear: I don’t feel there’s a point reading species descriptions unless I have specimens right in front of me for comparison. They are necessary but very boring). But I finished. And it made sense.

I even downloaded another paper that was referenced out of interest and I’m not terrified of trying to read it.

Now, I’ll be honest – and this is another reason I think my dose is too low – it was exhausting, and afterwards I did feel like my brain had been through a shredder, and I needed to close my eyes and not focus for a while.

But I did it.

All the FEELINGS

Emotional dysregulation is a very common part of ADHD (and ASD, incidentally). It means we basically don’t have the same brakes and filters that everyone else does when it comes to feelings. I can be crushed by really very minor setbacks and my whole day is ruined. Now, I’ve been aware of this problem since at least high school (although “Katie, you’re so sensitive” was the song of childhood so… hm), and I’ve been developing coping strategies – conscious, decisive strategies – since early uni. I have a lot of “calm down, it’s okay” in my head, a lot of “take a break, think of something else, remind yourself this isn’t a big deal” voices. There’s a lot of effort, actual tiring effort, that goes into presenting myself as a calm person who’s not upset by every tiny little thing.

Part of this was because I’d never get through a day if I kept thinking “I can’t believe I missed the tram, that’s so fucked up, I’m such a loser” before I even got to my chemistry prac (literally the day that I started consciously practicing this “mental redirection” stuff).

Another part is that if I actually lost my temper the way my brain wants me to? I’d have no friends. So there’s a lot of “[x] means well and is my friend and loves me and doesn’t mean to hurt me and doesn’t know that behaviour sets me off” and “[x] will see things that way because their life has been different to mine and their feelings are valid, it makes sense, don’t get angry”.

Now, these strategies don’t work for genuine panic attacks and flashbacks due to trauma and abuse, which I have, and it’s important to separate those things I can’t control from things I can mediate. But they’re super effective strategies for normal, day-to-day life.

Here’s the thing: they’re hard. They’re so deeply ingrained in me now that they’re almost instinctive. But they’re hard, and they’re tiring. I’m constantly talking myself down from an emotional cliff.

…which by the way is also exhausting because of my (suspected) autism situation, where emotions are difficult to access and you feel them before you even are aware of them and you can’t articulate them (and cards on the table, I’m fucking articulate). So I have to play this weird double bluff game where I have to manage feelings I’m not always aware of but I know something’s up.

And on Vyvanse, I don’t need them. I mean, I still do, but nowhere near as much. Nowhere near. And it is… so good, and so relaxing, to not be constantly calming myself from a state of intensity. I can just experience a setback or a disappointment and think “Ah well, bummer,” and move on without getting obsessive about it, or artificially forcing myself to move on by (sometimes) completely suppressing that feeling.

So. That’s a win.

Fine motor control

Something I learned from combing the primary research literature (I am what I am, dammit) is that ADHDers often have quite poor fine motor control. Dopamine is useful for motor control and we don’t have enough of it. I spend a lot of time getting very frustrated because I drop things and can’t do minor stuff like get things out of my bag without consciously thinking about how my fingers and arms should move, or stuff goes everywhere. It’s really frustrating. Confounding factor: ASD people often also have this problem, and Ehlers-Danlos makes proprioception (body awareness) really hard as well.

On Vyvanse, so far, my fine motor control is improved. I make a lot less typos when it’s in effect. That would be a measurable test. I can manipulate objects with greater ease. And, thanks to the emotional effect, when I do mess up, I don’t get nearly so frustrated.

Maybe I should take up knitting.

Less anxiety

So: as my specialist explained to me, anxiety makes ADHD worse, and ADHD makes anxiety worse, and the whole thing is a horrible feedback loop. One of the long term goals with the medication is to break that feedback loop and to ease some of that long term anxiety (the aspects of it that aren’t hard-wired or due to other causes, that is).

I have a lot of anxiety about getting things done, forgetting things, being on time, letting people down, etc. And on Vyvanse, I’m a lot calmer. I can focus. I’m clear-headed. That much-anticipated quiet in my head is really there. It’s not 100%. As I said, I think my dose is too low. I still get a lot of soap bubbles, and some of them pop before I can get to them, but I don’t feel the same urgency to get to all of them as quickly as possible.

I can manage my life and not freak out about how I’m failing to manage my life.

Conclusion

In conclusion: the meds are great. They help. They don’t make me high. They make me a lot more functional. But there are some problems: the crash is unpleasant, they don’t last long enough, and I think the dose is too low. Still, those problems can be resolved or mediated without too much trouble, and I’m optimistic.

Watch this space.

This is a long story, and some parts of it are really hard to write about. It’s got a pretty good ending (or beginning, strike up the cellos, etc.), so while that’s a spoiler it’s probably worth sticking through it for that. I try to stay factual, but it get personal. Maybe it’ll help other people have epiphanies, who knows?

It starts with some other letters: ASD.

A couple of years ago now, I tied together a bunch of scattered clues and, with a sinking feeling – and then a hopeful feeling – I began to piece together a story of self-diagnosis. I read widely. I tried to stay skeptical. But the pieces fit: the sensory bullshit, the executive dysfunction, the difficulty reading people and emoting, and a long, long list of other stuff which is beyond the scope of this post. It all landed in a giant messy heap that said “By the way, Kate, it’s possible you make your home on the autism spectrum.”

It was useful, and a weight off my shoulders, because now that I knew what the problem was, I could work around it instead of beating my head against a wall trying to be like everyone else and feeling like a horrible failure when I just… wasn’t. I wasn’t just going to grow out of social anxiety or my difficulty task-switching or my reactions to food textures or wool clothing or bright lights or loud noises, much in the same way that I wasn’t going to suddenly sprout wings and fly.

So I put together some strategies, strategies that would help me cope with what I now accepted as a physical reality rather than a personal failing. I did a bunch of research. And I felt at home with this. I didn’t feel the need to go any further with it.

I bounced off the idea that ASD and ADHD are often confused with one another, and also the fact that they’re frequently found together in the same person. Didn’t apply to me. I was a good student, after all. I studied hard. I have a PhD, fer cryin’ out loud. I followed the rules. ADHD didn’t apply to me.

(so… turns out there are some very common misconceptions about ADHD and I had them)

Meanwhile, I continued to suck at time management. To horrible, nauseating levels. I would make endless lists. I would back calculate from my time of arrival. I would allow an extra ten minute – fifteen minutes – half an hour – and still, I would be late for everything. I would consistently and forever fail to understand how long things take, even if they were things I did all the time. Every time I apologised for being late, I felt lower and lower. More and more hopeless. More and more disgusted with myself. Why can’t I get this one thing right? It’s not that I don’t care. I started to lose faith that it would ever get better. I started to feel that my apologies were worthless, because I couldn’t change this. I’ve never been late for a club dive, but that requires Herculean mental effort and it’s exhausting.

(side note: if you’re a person who thinks that people who are consistently late don’t care, please, knock that shit off. There are some pretty solid neurological reasons that people can try and try and try and still fail at that, and it doesn’t mean they’re blowing you off. I understand it’s frustrating. Waiting around is awful. Being made to feel like your time doesn’t matter is really, really awful. You absolutely get to decide if it’s a deal breaker. But just don’t think it’s because someone doesn’t care. Just because it’s easy for you doesn’t mean it’s easy for everyone else)

I would make these long to-do lists for my days at home and drive myself to exhaustion trying to get everything crossed off, and still feel at the end of the day that I hadn’t done enough. I would crash and just take a one hour break to do something that wasn’t work or an errand or a household task and…

—

…time…

time is unlimited and doesn’t pass if I’m not paying attention to it

in my mind it’s still the last time it was when I looked at the clock

if I don’t look at the clock it’s still five minutes ago

it doesn’t pass

oh shit

a whole bunch of it just passed while I wasn’t watching

while I was reading

while I was playing a game

while I was trying to relax and calm down

I don’t have enough of it, I can’t afford to have it just disappear like that.

And now I can’t relax, because time will disappear. I can’t trust it.

Slippery motherfucker.

—

I was reading a forum where this issue of being on time was discussed (actually, it was Captain Awkward), and a bunch of people piped up that yeah, that’s something that a lot of people with ADHD struggle with, and even setting a bunch of reminders doesn’t work (I set two reminders on my phone for every appointment).

Oh, I thought. That’s… interesting.

But no. Not me. That would just be an excuse. I have enough diagnoses, right? I have Crohn’s Disease and Ehler’s Danlos Syndrome (suspected), I’ve had endometriosis, I have major depressive disorder and seasonal affective disorder and I’m almost certainly autistic. I’m just looking for an excuse.

I can’t have ADHD.

But that’s… interesting.

—

Work days, days which were stressful due to commuting and the sheer panic of being around people all the time (because even when I like people, I’m still pretty sure I’m ASD), were kind of a relief. Because being at work was a break from my at-home list of do all the things right now as soon as you think of them because you’ll forget

you’ll forget

you’ve forgotten already

what

what was I thinking

just now, it was important, I know it

it’s gone

I will sit down on my bed in the morning, one shoe on my foot, glaring at nothing, waiting for that thought to come back, in case it’s like a cyclist in a velodrome and it’s going to be back on another circuit any minute now, when in reality thoughts are like soap bubbles and my brain is a giant foamy bathtub.

Sometimes they come back.

Mostly they just pop.

—

I started bullet journaling recently. I thought it might be a good way to get on top of my time management and my forgetting and all that jazz, especially as it’s recommended for ADHD people and I was beginning to suspect. The plan was that when I had a thought of something I needed to do or get on top of, I’d write it down.

I can’t describe the relief that I felt when I first started doing this. The relief that I’d written it down, and that all the things I wrote down were all in the same place, and I could find them again, and it was under control. The stress drained out of me.

But I learned something.

I learned that I think of things all the damn time. It never stops. My brain never shuts up. I reach for my bullet journal every five minutes until my daily to do list covers multiple pages and I’m desperately trying to make sure I get everything done because if I don’t I’ll fail again. Those soap bubbles just form and form and form and they don’t stop. They pop. Constantly.

It’s loud in here. I can’t think. I can’t sit still.

I have a lot of ideas. That’s great.

I can’t focus on any of them.

The lists help.

Then they overwhelm me.

—

I can – barely – watch a 22 minute show on Netflix. I can’t watch a 30 minute show made for Netflix that doesn’t need those eight minutes for ad breaks. I twitch. I check my phone. Constantly. I pause to see how much time is remaining. I get distracted. I check my phone again. Do I need to put the laundry away? Shit. What just happened on the show? I missed it.

I can’t watch movies, not by myself. I can’t watch TV shows longer than 20 minutes- not any more. It’s different if I have company, someone else to ground me. Sometimes I can do cross-stitch and that helps. Cross stitch can get me into a kind of pseudo hyperfocus. I can’t sit still.

I try. I used to be able to sit for one hour lectures. Mind you, I took a lot of notes. That kept me going. There was physical feedback and information and the rush of learning. That I could do. That I’m good at.

I’m really good at it, and being good at something is enough of a rush and reward to get me through it.

But I can’t get through a session in a conference. Shift. Move. Twitch. Fidget. My postural muscles suck, I’m hypermobile, but it’s not just that. My brain skims out. Wanders. I bring it back. I bring it back. I can’t focus. I take notes I know I’ll never read, just to try and keep my mind on track.

I can’t think.

I have to leave. Every couple of talks I just have to discreetly leave the room and walk around, sit down, because my brain has filled up with white noise and it has an almost physical weight and I’m exhausted from sitting still and focusing. I feel sick with it.

—

I can hyperfocus with writing. Sometimes. If it’s going well.

But more often: the slightest distraction and… it’s gone.

—

“I’m sorry, I missed that?”

I zone out in conversations all the time. In meetings. It’s normal for me. I’m constantly correcting, bringing my mind back into place, politely asking people to repeat themselves if I can get away with it, because everything they said just faded to white noise. Background to the noise in my head.

It’s not that I don’t care. It’s not that I’m not interested. I just get… distracted.

—

I’m a scientist. That’s my job. That’s my bread and butter. That’s what I do.

I can’t read a paper all the way through.

I haven’t read a paper all the way through in 12 years.

Do you know how humiliating that is to admit, for a working scientist?

The key issue is all the way through. I have strategies for coping, for making sure I get the relevant information, making sure I can still critically address the paper, but it’s difficult. It’s hard. It’s exhausting. I need to put my head down after a couple of pages. I feel literally nauseated. It’s like forcing my brain through a cheese grater. Exceptions are papers I review, because then I have a physical task: critique and write notes. But reading a paper just to absorb the information?

Colleagues send me papers to read, with cheery comments: “hey, this will be of interest to you!” and I just want to cry. Because I can’t. I can’t. I’ll sit down. I’ll get a cup of coffee, maybe a snack, and I’ll get comfy. Pick the right music, maybe that’s it. Maybe that’s what will make the difference. I had enough sleep last night. I can do this.

And I will try to force my brain into it.

The general low quality of scientific writing as a form of readable communication does not help. Well-written, eloquent work will be easier. But it’s still a slog. The fact that we have to write scientific papers as dispassionately as possible, and the fact that the methods section will always be dry because that is how it’s supposed to be and that’s a good thing and- I can’t read it.

And I can’t do it. My brain won’t sit. It will take in three sentences. GOSH THOSE WERE SOME SENTENCES. THAT WAS GOOD. LET’S GO DO SOMETHING ELSE. No, read the next sentence. WHAT WAS THAT FIRST SENTENCE AGAIN? I LIKED THAT ONE. LET’S READ THAT ONE AGAIN. No. Next sentence. LET’S SKIP TO THE RESULTS. DO WE EVEN HAVE TO DO THIS. YOU’RE OUT OF COFFEE. SHOULD YOU GET MORE COFFEE? DID YOU LOCK THE DOOR THIS MORNING? DID YOU REMEMBER TO ASK YOUR BOSS ABOUT THAT THING? HEY, YOU SHOULD MESSAGE YOUR FRIEND ABOUT LUNCH. NOW. BEFORE YOU FORGET.

WAIT.

YOU KNOW WHAT. I WANT TO KNOW HOW FITBITS HANDLE SLEEPWALKING. DOES IT KNOW YOU’RE ASLEEP?

WAIT.

WHAT WAS THAT FIRST SENTENCE AGAIN.

Let me tell you, I skim. I am pro at skimming. I’m very good at scanning paragraphs and picking up the words I need. The depth and the detail and the discourse? I miss those. I need conferences to get those.

And I keep sitting down with these papers. Maybe if I take notes. Or highlight things.

I can do this, I say, but I just. Can’t.

And I just want to throw up. Or cry. Or both. Because I’m not stupid, and I’m not lazy, and I’m good at this shit, but I can’t do it. And I feel both very stupid and very lazy.

And I go back to the drawing board and try to find another way.

—

Colleague on voyage: “I was up reading papers last night.”

Me: “ah, my sympathies.”

Colleague: “oh no, well, you know, reading papers can be fun though.”

I want to punch him.

Everyone on this voyage is working on their science. They’re reading papers and writing them. I feel like a fraud. I open up my paper draft, and I feel genuinely nauseated and I want to cry. Everyone else can do this. I’m smart. I have a PhD. Why can’t I do this?

Fuck this, I’ve got a few more episodes of The Flash to get through.

—

I can’t even read epic fantasy novels any more. The payoff is too slow. I can’t focus. This shit is getting worse, not better.

It turns out that’s a pattern. It turns out women with ADHD actually often hold it together pretty well – through school, sometimes through uni if they have a lot of structure – and then somewhere in their mid-20s or mid-30s, they crack. It falls apart. That’s when routine changes, when life gets less structured, and also when hormone levels change (that’s a factor). It’s not true for everyone, of course. Some get diagnosed early, in childhood. But mostly, in kids, people are still looking for a loud disruptive boy, and not a daydreaming girl with a wandering mind who – it turns out – can do very, very well at school without having to study, or concentrate, and so who slips under the radar.

No-one would think there’s anything going on there. She gets straight A+s, she behaves in class, she’s polite. Some social problems, but ah well, that happens, doesn’t it? Smart kids, and she’s a bit chubby and bossy, so she’ll have problems. But ADHD? ASD? No.

In her own way, she becomes invisible.

For a long time.

Until she’s 36.

—

ADHD is profoundly genetic. This does not surprise me in the least.

We tell stories in a very particular way in my family.

It gets convoluted, and dramatic, but it’s very entertaining. If you want an interesting, loud, overwhelming evening of entertainment, come to dinner with my brother, my father, and myself. You will not get a word in edgewise. You will hear some weird shit.

But I promise: you will not get bored.

—

I had my specialist appointment today. I was nervous about it. I’ve been anticipating and dreading it for months, because what if I don’t have ADHD, and I really am just lazy and don’t know how to focus? I’ve tried so many things, what can I possibly have missed, I try so fucking hard–

I have ADHD. Yes. I really do. That’s why I keep trying and failing. I have Attention Deficit Hyperactivity Disorder and I don’t have enough dopamine in my brain and the whole system is just borked: poor executive function (ability to make decisions, organise, task switch), emotional dysregulation (I feel things super keenly and too much and I can’t watch sad movies or read sad books because it will destroy me and I’ll be miserable for days and it will actually affect my life, I am not joking or exaggerating), poor short-term memory, poor impulse control (BUY ALL THE THINGS), tendency to hyperactivity, and – as is in the name – difficulty focusing.

Specialist – very warm, approachable, super-competent – listened to me babble at full speed for 20 minutes (and if you don’t know me, my full speed babble is… amazing. It’s just a string of syllables but apparently it was coherent). She took notes. She asked questions. She gently brought me back on track when my mind wandered. She had me take a couple of questionnaires, even though she was fairly happy to diagnose me on my history, because my medical situation is complicated and there are some confounding factors.

I’m not sure if she diagnosed me on history or my 20 minutes of light-speed topic-jumping babble, to be honest, but no judgement if it was the latter.

And now I’m on medication.

And I’m not lazy. I’m not stupid. I have been trying. I don’t think meds are the be-all and end-all, or actually magic. I expect to have to still use coping strategies – but now I think they might actually work. I look forward to the possibility of watching a TV show by myself. Or sitting down to write and actually writing and not doing a hundred other things instead. Not reading papers, because that would be a miracle, although… a girl can dream.

Or maybe I could be on time for something. That’d be pretty sweet.

But what I want most of all is for my brain to shut up, because the noise is exhausting. I want to focus. I want to think.

In six weeks I’ll go see her again, and we’ll see how the meds are going, and then when the edge of it all is taken off, we’ll discuss other coping strategies, and talk about how to assess me for ASD now that the confounding factors of ADHD symptoms might be a bit less… confounding.

In the meantime, I feel vindicated, relieved, and embarrassed. I have a lot of labels now, and a lot of diagnoses, and it feels like a bit much to get my head around, but mostly what this means is I can try and cut myself some slack; because it turns out this shit isn’t my fault. I can relax a bit.

Well, I can try. We’ll see how we go.

And I know there are people out there who will think that taking meds is the “easy answer”. Maybe it is. Maybe there are other tactics I could use. But fucking hey: I feel like I’m fucking entitled to a few easy answers at this point.

I am Australian. I love my country.

I love the land. Australia is deserts and rainforests and reefs, strange and beautiful and wild. It’s isolation and distance and a scattered cascade of stars spiralling around the Southern Cross. It’s lyrebirds and magpies and mopoke! mopoke! It’s the smell of eucalyptus, the startling double-take when a tree stump unfolds and hops across the trail in front of you, fat tail stretched out straight for balance behind. It’s a wallaby meeting your gaze and waiting to see who’s going to move first.

It’s a wild sense of space, of grey leaves and red sand.

It’s bizarre and surreal, sometimes. It’s wedge-tailed eagles taking down drones, giant kangaroos taking down trucks on desert highways, and wombats literally crushing predators using the bony plates on their rear, because you can’t get much weirder than a fat blob of muscle that kills things with its arse. It’s giant huntsman spiders that you try to get rid of, and then give up and name “Fred” so you’ve got something to call it when it scuttles out from behind the TV. It’s a place where it’s a genuine national obligation to mess with tourists and internationals by spinning the most bizarre stories you can come up with as absolute truth I swear and having people believe it because Australia really is that weird, as far as the rest of the world is concerned.

Australia is being horrified to discover that so many other countries don’t have preferential voting or bulk billed medical clinics (and yes, I cry when I see Americans starting GoFundMe petitions for basic fucking healthcare. I literally cry). Australia is knowing that I have time to finish my degree without having to work my backside off just to afford rent, because I have a Student Allowance (more on that later). Australia is wondering why you’d need a gun to go for a walk. Australia is being incredibly laid-back about religion such that I have no hesitation describing myself as an atheist, because that won’t affect my job prospects or my social life in any meaningful way.

There’s a punchline. It’s coming.

I have a lot of privilege in Australia. I was born here. I speak English. I’m white (to be honest, if I were any whiter, my albedo would ban me from crossing the road. The reflection would blind people and cause traffic accidents). I’m very comfortably middle-class. And even though I am on the queer side, I’m a cis woman who likes blokes, and I’m married to a bloke, and monogamous, so my queerness is unlikely to appreciably affect my life in any way. Even though I have chronic illnesses, I’m heavily shielded from the consequences because, firstly, they’re largely invisible and don’t affect my mobility much, and secondly, my economic privilege cushions me from a good deal of the fallout.

So yeah: for me, Australia is a pretty good deal (I don’t feel guilty about my privilege. It’s not an accusation. I’m angry that other people don’t get to feel as safe as I do).

But Australia is deeply flawed. Australia is a colonised land, built on a history of deliberate massacre, of genocide, of horrific racism and suffering, and while overt genocide is considered gauche these days, apparently mysteriously dying in police custody is just fine. Australia is an insular, self-involved country that literally locks up and tortures people who did nothing worse than desperately ask for help. Australia is a puritanical moralistic warrior who took an embarrassingly long time to allow marriage equality, in some part because the Australian Christian Lobby held far too much sway for a country that considers itself to be super chill about religion. Australia is taking pride in the glory of our natural wonders and then selling it to mining companies because moral conflict is only something that happens to other people. Australia is loving Aussie rules football so much that we seem to think it’s okay to rape people as long as you’re good at kicking a footy around. For a country whose mantra is A fair go! and whose values supposedly include mateship, it’s nauseating how much worse our social welfare systems are getting, day by fucking day. Australia is an appalling lack of self-awareness, it’s Fuck Off We’re Full and Love It Or Leave It stickers on utes belonging to people who take an inexplicable pride in their bigotry and ignorance.

Love it or leave it.

What fucking nonsense.

There is no perfect country, and no place in the world where universal fairness and perfect justice hold sway. There is nowhere to go to get away from the flaws in your own nation.

Love it or leave it.

What jingoistic bullshit.

I’ve been challenged on this, defiantly told that Aussies love their country and it’s THE BEST COUNTRY IN THE WORLD and HOW DARE YOU CHALLENGE THAT. I’ve been told by otherwise intelligent, self-aware people that the United Nations shouldn’t criticise Australia because other countries have problems too.

This is what we call a false dichotomy, where you can hold only one of two positions: either Australia is terrible and you hate it, in which case you should leave; or it’s perfect and you love it, in which case you should never criticise it.

I love Australia. It’s my country. I never want to live anywhere else. There are things about it that are wonderful and amazing and glorious. There are things we get right. There are things we get almost right.

And there are things that we are so wrong about that it’s heartbreaking. I love Australia and I argue and debate and vote the way I do because I believe it can be better. I believe we can have a fair go for all. I believe that we can protect our environment and our economic interests at the same time if we use our brains. I believe that improvement is possible. I believe we can prosecute rapists and that hell, maybe they’ll be replaced by good athletes that don’t rape people. I believe that we can stop being racist pricks if we stop and think about it and actually take the time to give a shit.

But none of that will happen if we’re blind to the problem. None of that will happen if we’re busy chanting AUSSIE AUSSIE AUSSIE OI OI OI and refusing to hear a word of criticism. None of us will get better if we’re not aware of what we’re doing wrong in the first place.

There is no conflict between loving your country and wanting it to be better. Believing that it can be better is real love, and real faith. There’s no dichotomy here.

There is, however, a lack of jingoistic bullshit.

I’m developing a new policy before arguing with anyone. Essentially, arguing with people about things that I care about is exhausting. It’s emotionally trying. It can bring me to tears – which is already an uneven playing field for people who don’t care about what they’re arguing, who just want to stir up shit. It’s almost impossible to explain to someone who never has a personal stake in these arguments what it feels like to have a personal stake in these arguments. No, you’re not hysterical. You’re not overreacting. This is your life. It’s personal. It’s real. It matters.

So, when I argue, I’m investing, heavily. Often, the other person isn’t. Often, they just want me to perform.

I’m operating on a limited resource budget. I do not have the spare fuel to dance for the fucking audience.

Here’s my question: do you care about the truth?

No, I’m not a conspiracy theorist. I’m asking: do you care about the bigger picture? Do you care about robust statistical analyses and studies that tell us what’s going on? Do you care about the risks, the realities, the danger, the damage, the suffering, the truth?

Does it matter to you that you’re actually correct? Do facts matter?

Or is it more important to you that you score points, throw out rhetoric like a thirteen year old who has just had debating explained to you by your underpaid English teacher?

What if you’re wrong? Honestly. What are the consequences of you being wrong, and do you feel bad about it? If you care about being wrong – if that would actually bother you, if it leaves an uncomfortable feeling in your stomach – that’s a good thing. It means you’re invested.

If you’re wrong, have you done harm by being wrong? Are you willing to accept the possibility that you’re wrong? What would convince you that you are wrong? Or are you so ideologically committed to this argument that literally nothing will convince you? That you cannot imagine the evidence required to shift you on this point?

These are important questions. These are the questions that change the world, the questions that change you.

I’ve seen people change their minds. In Australia, we’ve seen that very recently – the postal survey on marriage equality was an unnecessary exercise in psychological torture, but the result was telling: people have changed their minds. A lot of people have changed their minds. How and why that happened is a story other people have told a lot better than I could, but the important thing is that it did happen.

I’ve seen people change their minds about sexual harrassment and toxic masculinity. I’ve seen people change their minds and admit that privilege is a thing and that maybe that privilege prevents them from seeing certain problems. I’ve seen scientists who were convinced that anthropogenic climate change was a myth run their own experiments to support their theories and step back when the results came in. Because… they were wrong, and wow, did the evidence overwhelm them. They had to let go of the cognitive dissonance.

Obviously, being a progressive lefty socialist sort of person, I find these to be positive changes. I haven’t seen a lot of changes in the other direction, but that’s probably because I’m not looking at the places where those changes happen. I have my own biases that I need to be aware of.

I have to be able to extrapolate beyond my own environment. If I believed the whole world resembled my immediate environment, I’d be living in paradise. I’m surrounded by compassionate, good-natured, generous and intelligent people, the vast majority of whom do care whether something is true, and they do care if something is fair.

I can use anecdotes and experiences from my life as supporting evidence. I cannot say that it’s the whole picture. I need access to a wider picture, to more data. I need to read things I actively disagree with – and believe me, I need to be in a good mental space to do that, because depending on what the topic is, I can be literally nauseated and enraged – because otherwise, I won’t learn.

Because it matters if I’m wrong.

It matters if what I’m doing is right, if what I’m saying is fair, if what I believe is true.

Of course, some shit is subjective. Some shit will only be true because your priorities are different from the other person, whose priorities are different, and for them, what you’re saying isn’t true. Reality needs to be experienced, and it needs to be interpreted, and consequences need to be prioritised. I think most of us are aware of this on some level.

Most of us are aware that, sometimes, we prioritise what we want over what is true or fair. Some of us find that uncomfortable (I sure as hell do), and some of us are perfectly okay with that.

I am really good at rationalising my behaviour, so good that I have to keep an eye on it. When I’m deep in a depressive episode, I can justify all sorts of bullshit impulse decisions. Even knowing that this is true, I have to be on guard.

And sometimes I let myself get away with it. Hell, I’m not perfect. I never claimed to be. I have my subjective priorities, just like everyone does. I’ve internalised a bunch of toxic bullshit, just like everyone else has. And living inside an interrogative framework to make sure that I’m trying to be fair and truthful most of the time is a bit tiring.

All the same, I’m going to ask this question, because some things are too important to leave up to ideology and rationalisation. People have rhetoric and anger and frustration and it builds up and spills over, because we’re fucking mammals, and sometimes we just don’t give a shit. We want what we want, we get defensive as fuck, we’re often bigoted assholes and it can take us a really long time to learn, and that’s if we even want to learn.

But if your response to feminism is “well, I believe in EQUALISM and women already have euqal rights”, or if you think we live in a post-racial society, or if you think that I would be less likely to be murdered if I carried a handgun on my person in the city (instead of the statistical reality that I would be many times more likely to die), then I’m pretty sure you haven’t run the numbers.

Sure. It’s more comfortable to think these things are true. It’s easier.

Climate change is scary. The idea that men kill women at a bizarre and ludicrous and indefensible rate is scary. The fact that people are still racist and bigoted and homophobic and that this perpetuates suffering and injustice and cruelty… is distressing.

Most people don’t want these things to be true. It’s exhausting and upsetting.

Thinking about whether what you believe is true, raising the possibility that you’re being unfair, or unkind, or that maybe there are some things about yourself that are less than fair and forthright- well, that’s uncomfortable. It’s squirmy. It’s painful. It can even be horrifying.

I still think it’s worth it.

Pace yourself when you argue, and – if you don’t already do this – ask whether you care if you’re wrong. Ask whether it matters. Ask whether you can be convinced.

Because if the answer to those questions is no, then you’re wasting my goddamn time.

There’s a lot of talk lately about living with pain and what to do about pain, and as a person who is in pain a lot, I thought I might throw my two cents on the pile.

People who aren’t in chronic pain, or who have never done anything worse than had to get through a crappy sprain, might not understand what it does to you long term. Now, that applies even to relatively low level pain that marches along in the background: if that pain was short term, no worries. You’d just tough it out, maybe try some paracetamol (if that works for you), or ibuprofen (if you’re able to take it. I’m not). You’d rest, take it easy.

The problem comes when even that low level pain is constant, or even only goes away for an hour or so at a time (FREE! I WILL DO ALL THE THINGS!).

I’m not saying my pain is low level. Pain is incredibly individual. My pain is abdominal and crampy, so it’s the kind of throbbing, burning ache that can sneak up on you. You shift a bit, feeling uncomfortable, but keep doing what you’re doing. You lean forward a little, frowning, but turn the page in your book. Then it gets bad.

I often don’t know how bad it’s gotten until I realise I’m hunched over, breathing through it, and I’ve closed my eyes, or I’m leaning on a desk waiting for the wave to ease. I do get sharp stabby pains (obviously bad!), and they floor me, but they’re not super common and they’re not the real problem.

Being in constant pain is not a not tough enough problem; it’s a medical problem, for a couple of reasons, even if you want to be a hardarse about it.

• Long term, constant pain can lead to hyperalgesia/hypersensitivity, which is where the pain comes on even when the cause is gone. Your spine is sending panicky pain signals that are either completely unnecessary, or way overblown. I have that in my intestinal tract. Good times! There are a few ways to treat and reset hyperalgesia, and I’ve gotten some benefit from them. I recommend a really good pain specialist, if you can afford it (and that’s a real issue. My pain specialist is absolutely not cheap).
• Long term, constant pain, whether it’s turned into hyperalgesia or not, is a mental health issue. It affects your concentration. It affects your energy levels. It promotes severe anxiety and depression. It makes you cranky and angry. I put in a lot of disclaimers when I complain about things, mostly because I know that when I’m in pain I tend to be really negative about everything else. If you don’t have the self-awareness to know you’re lashing out (and nobody is perfect), it can have appalling effects on your relationships and your family life. I know when my patience is running low, and I try to avoid people (even people I adore) who will set me off. I don’t walk Amos if he seems extra bouncy on those days, because I won’t be patient enough with him – and he’s a dog, he has no idea why I’m upset.

Essentially, expecting people to harden up and tolerate chronic pain, even low level chronic pain, is going to have devastating effects on their life. This is not to say you shouldn’t just go “oh well, I have a mild headache, might just take it a bit easy and drink some more water” – that’s not a terrible idea. Try icing and/or heating a muscular ache that’s just come on.

The thing is: chronic pain sufferers have already tried toughing it out. They’ve tried icing and heating – many of them keep doing that, to reduce the amount of painkillers they take. Since my pain is through some layers of fat and muscle, that… doesn’t help me. I’ve tried a few things. Sometimes a heat pack helps. The ice pack makes the cramps worse (possibly I was too keen with it), but about an hour afterwards, the pain seems to subside.

And sometimes, I say, fuck it, I’m done, and I take the painkillers.

My pain tolerance is actually pretty good (you might not think so, given the amount of painkillers I take), but there are some limits to what I can get through and what I can get done.

Here’s a list of the ways pain interferes in my life (not exhaustive) and how much. I’ll break it up into things I have to do and things I want to do.

Things I have to do

1. Physio work and resistance training
   I have to do physio work and resistance training because I’m hypermobile. My joints basically collapse if I don’t, and then I end up in more pain. Now, the problem is that I have to do a lot of core work. I have to. But core work compresses my abdomen, which is already sore and crampy and inflamed. So it can make that pain worse, and the pain distracts me from proper form and tires me out. Still: it’s something I can work through.
   Interference level: mild to moderate – can tough it out most of the time
2. Concentrate on reading scientific papers, designing experiments, analysing data
   This is a really bad one. This is my actual job. Pain can cause brain fog, and it’s hard for me to concentrate. It’s hard from me to separate this from me low blood pressure issues and muscle fatigue relating to the (suspected) EDS; they both interfere like bastards. What I have found is that if I take painkillers, my concentration is (usually) much better. I can string thoughts together and get stuff done. If I was allowing myself to try and tough it out, I would do an extremely shit job.
   Interference level: absolutely fucking appalling – toughing it out makes me useless
3. Repetitive lab work
   This, surprisingly enough, is okay! I have been doing lab work long enough that it’s basically muscle memory at this point. I double check my maths, I line my reagents and tubes up with my tip boxes so that I know if I’ve missed something – I have a bunch of different strategies, the kind that most lab people develop, to account for my native absent-mindedness. I can get through a long day of lab work while in very bad pain, and still get stuff done. I shouldn’t, because of the whole hyperalgesia thing, but I can, for at least a day.
   Interference level: surprisingly low
4. SCUBA diving and guiding
   This one is a mixed bag. For the most part, I do quite well. I have a lot to distract me from the pain – people to talk to, equipment to check – and when I’m underwater, the cold actually helps ease the pain mostly (unless I get the stabby style of cramp, and then I just have to tough it out. That’s only happened once though!). I don’t have trouble concentrating because, like lab work, diving skills are very much in the “muscle memory” category. Check gauges, check on group, count heads, point out cool things, help people with stuff. It’s all quite natural. Now, walking around wearing cold water dive gear is hard muscular work, but it’s not high impact or cardio, and I manage.
   Interference level: mild to moderate
5. Sleeping
   It’s a problem. On the one hand, pain makes you tired, and when it gets past a certain point, you just kind of drop off (assuming you don’t have actual insomnia); but research (and personal experience) shows that sleeping while in pain actually does not result in quality sleep. You sometimes wake up feeling just as tired as when you went to bed. On the other hand, I’m not moving around, digesting food or compressing my abdomen when I’m sleeping, so it’s a mixed bag. I don’t like pain killers before bed because my (extremely wrong) instinct is that I could just sleep through the pain. I might take a sleep aid, maybe once a week (2-3 times in a bad week, not at all in a good week) on average.
   Interference level: mild (when pain is moderate), to severe (when pain is bad)
6. Interacting with other humans and not being a complete dick
   Ah, this is a fun one. Sarcastic and impatient Kate comes out when I’m in a lot of pain. I’m less polite, less careful, less filtered. As a spectrummy lass, a lot of energy goes into my filters and my careful examination of what I’m saying and how people might take it (YES I OVERTHINK THINGS HUSH). I have to really tighten my grip on myself. A lot of the time, I’m not even upset or snarky, but my voice will come out very tight and strained and people think I’m angry with them, and then I have to manage that. I won’t ever take painkillers just so I’m not a dick with co-workers – I have a bit of a map with long term colleagues – but if I have to interact with a lot of strangers and I’m in a lot of pain, I will.
   Interference level: variable depending on context
7. Writing stories
   This is not quite as bad as the “reading scientific papers” (unless I’m outlining. Outlining requires a lot more sharp focus for me personally), but it falls under that category. And yes, I do have to do this to stay sane.
   interference level: moderate
8. Voyage work
   I love voyage work, but it is extremely intense. It’s 12 hour shifts, 7 days a week, for multiple weeks, surrounded by people I don’t know very well. It’s basically a stress keg (and often heat keg: most of my voyages are in the tropics, which sets off the Crohn’s and the low blood pressure issues). I would not physically be able to do this without good pain management. Without painkillers, I would lose a significant portion of my income. I’m a contract, casual scientist. My last voyage earned me more than 2/3 of the previous year’s earnings.
   interference level: ahahahahaha massive

Things I Want to Do:

1. Cardio (running, swimming)
   I could argue this is something I have to do, because it helps my overall fitness and energy levels, but people are more likely to argue the point, so it ends up here. Running is high impact, and it’s really bad for Crohn’s pain – but it’s my major cardio outlet, I’ve worked incredibly hard to be able to do it as a person with hypermobile joints, and it is incredibly good for my mental health. Pain interferes with it abominably. Running changes blood flow to the gut, and wow, does it show, it’s appalling. It can bring me to my knees (almost literally, but I very rarely fall over). Swimming… that’s something I don’t do much, just because of the level of faffing about required to make it happen, but even then, the increased blood flow seems to set off my pain. Not as bad as running, but still quite shit.
   Interference level: bad to really really bad
2. Rock climbing!
   Pain does not interfere that much with rock climbing unless it’s super bad. I am a very slow climber because I have to set my joints and because keto doesn’t leave me with much explosive power (glucose is much better for that), which will limit me in a lot of ways, but it does mean that climbing is extremely low impact. It is core work, so that can be a problem, but it’s negligible. Unless I have very bad pain, I don’t have to take painkillers for this.
   Interference level: quite low
3. Housework, dog walking
   I don’t put this under “have to do”, because the house can get to a fairly appalling state and life will move on, but it’s important for my mental health to keep things moderately tidy. Still, I can get a fair amount done in pain. I just focus on the next little thing. The next little thing. And the next little thing. And then it is done, and I relax, and feel a bit better about everything – whether it’s because the bed is made with fresh sheets, or the kitty litter is changed and the bathroom no longer smells like cat urine and poop, it’s nice. I’ve put dog walking under this because – again – Amos will survive without walks (he has other mental stimulation) for a few days. I can usually manage maybe 20 minutes while in pain.
   Interference level: low

I’ve exhausted my brain a bit here, and no doubt I’ll think of more as soon as I click “Publish”, but let’s go with the list as is. The important thing to note is that, even when the interference level is low, that’s only short term. If I had to do tedious lab work on end while in pain, it would become impossible.

If I let myself be in pain all the time?

I wouldn’t run. I would barely do physio. My joint health and muscle tone would decline until walking was exhausting (I’ve been there quite a few times). I would barely talk to friends. I’d suffer through interactions with co-workers at a bare minimum. I wouldn’t read papers or manage proper analytical work – I’d effectively be out of work and I would certainly not meet my grant conditions. I might get some lab work done. I would sleep a lot, but poorly. No voyages. No running. Severe depression. Possibly permanent damage to my relationships and friendships. My health would deteriorate on a number of fronts. I would barely write.

It almost goes without saying that my hyperalgesia would get a lot worse.

Now, here’s the deal: my GP, my main pain specialist and my gastrointestinal specialist want me to take painkillers regularly. They’re high dose codeine, and they have knock on effects that aren’t great for Crohnies, but it’s more important to shut up my spine and try to get the hyperalgesia under control. My other pain specialist (the guy who is covering while my main specialist is on maternity leave) wants me to not take painkillers. He wants me to be mindful, and expect to be in pain. I don’t hate the guy, but that attitude pisses me off. I’m okay with a very low level of occasional, unavoidable pain. In fact, if it’s very occasional, I’m even fine with higher levels of pain.

I’m not okay with visceral hyperalgesia that dramatically reduces my quality of life.

I only have one life. I have things I want to do with it. I’m not okay with fading into the background because of chronic pain.

This is a bummer of a post, but there’s an upside: I recently did a stint in hospital for an IV ketamine infusion. It wasn’t a magic bullet. It hasn’t made my pain disappear. I’m still needing painkillers, which really upset me at first, until I ran the numbers.

But.

I am needing a lot less of them. Which is super nice, and something to focus on whenever I cramp up and get upset about it. Now, whether that’s because of the ketamine, or because I am pushing myself to tough it out (ketamine doctor is the one that doesn’t want me on codeine), I don’t know. It does feel like I’m getting less cramping. I am simultaneously disappointed and excited, which is an interesting mix of feelings, let me tell you.

Now, from the above list, I have choices as regards a management plan. I could look at all the things where pain interferes heavily with my activities, and I could decide only to take painkillers (i) when I’m doing those things and/or (ii) when I’m doing those things and my pain is quite bad. I could do that. It would reduce my opiate intake – win.

But.

I have hyperalgesia. It might make that worse. So here’s the other angle.

I could take painkillers when the cramping starts – trying to fine tune a dose that works, which is very difficult, because codeine is packaged with paracetamol (acetaminophen for you U.S. folks). I can’t just take a tiny amount, see if it works, and then take a bit more if it doesn’t. I’m stuck with whatever dose I take for the next 4-6 hours – which can be catastrophic if I’ve badly misjudged my pain levels. This would mean I’m in a lot less pain overall, and it would be much better for the hyperalgesia, but it would make the side effects of the painkillers worse, and it would increase the risk of addiction or dependency (although, I do tell my GP exactly how much I take and when I take them, and she continues to tell me I’m low risk, and has promised to tell me when that situation changes. I trust her to do so). It might also increase the risk of tolerance, and making the painkillers less effective – which I really don’t want. It’s the main reason I’ve tried so many other non-opiate strategies. I don’t want to be dependent, chemically, and I also don’t want the stuff that works to actually stop working.

So this, my friends, is what I refer to as “painkiller math.” It’s a weird dance, and it’s difficult, and no matter what I choose, someone’s going to judge me for it.

Still.

Halved my dose.

That’s pretty cool.

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]