Fresh Air and Open Windows

I’m a very open person. I’ve tried being private, honestly, and it just doesn’t work. Things slip out – sometimes little snippets that I think are interesting, or funny, but mostly, things I feel an urge to talk about. I don’t always examine that drive; it’s just there.

I’m writing about it now because there are some interesting consequences to being open online, and I’ve only recently run into them. Because I share so much online, sometimes people buy into the idea that they know you personally. This has led to some bewildering communications that eventually got just a tad creepy. Even people who don’t get creepy come to the conclusion that they know you very well and it is quite weird.

It’s not entirely wrong, either. These pieces of myself that I share are real – and if you read them, you probably will come to know me. You’ll be missing the pieces that I don’t share online, but that’s the way of things; there’s stuff I don’t share in person, either. My blog-self and my Facebook-self and my Twitter-self are no less sincere or less complete than my in-person self.

The reason it’s confusing is that I don’t know you; it’s a one-way street. I had someone shove their way into my awareness in a way I really didn’t want, and I’ve had people that I don’t know that well think they know what’s best for me, and it’s a consequence of openness that I never really considered.

It’s not enough to stop me, and by the way, don’t let it stop you from saying hi or chiming in! Most people know better than to be creepy or interfering, so I don’t assume that’s how it’s always going to turn out.

There’s also the risk that when you show your weak spots, people will come for them. Mostly I haven’t had that, probably because I’m not widely read and most of the people I know are genuinely lovely.

There’s the risk of stigma. A good deal of what I write about carries stigma, and the risk of professional consequences.

And yet: that drive. The drive to talk, to tell, describe, explain, narrate, share. I’ve always wanted to tell stories, and there are some stories that cut you badly if you don’t tell them. They can suffocate you if you don’t let them out.

But when did I start allowing myself to be open? Because that requires a trust and a confidence in my own safety (physical, emotional) that wasn’t always there.

I didn’t have a great time in primary school, and it took me a long time to trust my high school friends. They… wanted to hear what I had to say? No way. They were interested? Couldn’t be.

They… believed me?

And they didn’t think less of me, for the things I felt and the stories I told?

I couldn’t accept it, for the longest time, but when I realised there were people who were willing to hear me, it was as though a window opened inside – and the stories could get out, and the love and the support could get in. The air shifted inside, was less stuffy and toxic.

All of which is a long-winded way of saying: I don’t have much of a privacy line. That’s clear from reading this blog. I’m always willing to share details of my life, my medical history, my brain function, my past. There are some windows I’m still not ready to open, but glimpses have turned up if you know where to look.

Over time, more and more has spilled out, simply because I’m bad at keeping the windows closed. I need the air that gives me, or it gets too thick to breathe in here.

At one point, I wasn’t going to write about mental illness, about depression – but then I did anyway. Because I felt it was more important to tell the story than to fear the stigma. I knew I wasn’t the only person who had been through that, and I know also that reading other people’s stories helps me. It heals. I want to read about other people going through this shit, reading what they’ve worked through, their wins and their losses, just so I know it’s not just me, I’m not alone with this.

I want to put my story up there, firstly for my sake, so I can breathe; secondly, so that it’s there in case there’s someone out there who needs to read it. Maybe if they’re ready, they can open a window and breathe deep.

I wasn’t going to write much about personal things, but it’s all crept in. I can write about the medical issues – and other people can know they’re not the only person figuring this shit out and struggling with how isolating it can be. I can write about scientific or academic burnout, and colleagues who feel such intense shame (and it’s intense, painful shame) can know it’s not just them, and if we decide that it’s a personal failing and a weakness (it isn’t. It really isn’t), well, at least we’re not the only people to fall prey to it. I wrote about chemotherapy for my cat, and wrote again when he died; I wrote about rehoming a dog I loved and adored for three years, and how awful that was; I wrote about dog training; I wrote about how abdominal MRIs have a 1 in 6 chance of a false negative for Crohn’s; I wrote about the fact that sometimes it’s scary being a woman in the gym; I write about feminism, and how much it hurts when you begin to fully see the world you live in and the way you’ve been treated; I write about writing; and I write about how I like planes, and how it feels to sleep on a ship out at sea…

Sometimes I write about things that make me feel naked and exposed, and vulnerable, and awful, and I fight the urge to take the post down almost instantly, because it is so easy to hurt me, and there are some windows that are hard to open – but I leave it up, because those are the important ones.

Those are the ones where it is crucial that people know they’re not alone. It’s not just them. And yeah, it’s going to be weird if I meet someone at a conference and they’ve read that post. That’s going to be fucking weird.

And that naked, exposed feeling is awful, and I think I’m going to throw up at those times, but I feel like it is a small price to pay for making it abundantly fucking clear that a lot of people go through what I went through, and it’s not okay. It’s real. And you’re not alone.

I do have a few rules. I may not have a sense of privacy, but no-one else signed up for a role in my stories. I carefully cut around the people in my life (except when it’s utterly benign). I make sure that if I paraphrase someone as an example that I need to tell my story, it will not be recognisable to anyone reading it. This is my ethical line in the sand.

There is precisely one person whose preference for privacy I fundamentally refuse to respect. That person gave me the stories that I should never have had. Those stories should have been thought-provoking, compassion-inspiring fiction, not personal experience. And they’d prefer I didn’t tell those stories, because it makes them look bad (why, yes. Yes, it does).

And frankly, they can get fucked.

Ultimately, I don’t really understand why I don’t have the privacy gene. I know that other people are uncomfortable with some topics, and so I try to be a bit more circumspect in person, or in starting conversations. Here? Anything goes. There is so much to talk about, so much to say, so much to be described and researched and considered and overcome.

So much to feel, so much to share.

Sometimes I feel strange and weird about it, knowing that people judge others for being open; a little internal voice says I’m being narcissistic, assuming people want to hear the stupid details of my insignificant life; or that I’m being an exhibitionist, demanding attention for the stupidest things; or even that I’m immature, not having worked out that some things are not to be discussed; or that I’m naïve and stupid, not realising that being open has consequences and the internet is forever.

That’s not it. Everyone has stories in them, and to quote Hannah Gadsby, my story matters. All stories matter. I have a drive to tell mine, so I do.

I’m not ashamed of who I am or what I’ve been through.

I am not ashamed of my scars, my identity, my opinions, my obsessions or my passions.

I get to decide how my story is told. This is my power. I choose to open the window. I choose the words. I shape the dream. I build the fire. This is mine. It makes me free.

The stories come out, the wind roars in, and I can breathe.

Advertisements

Morning Coffee Feminism: Risk Assessment and Dying in the Park

Content Note: assault, sexual assault, rape, trauma, abuse, violence, rage

I had to calm down before I could write this post. It’s taken about a week and a half since I cracked, crying, unable to stop, unable to believe what so many people seem to think.

I mention this not to demonstrate my emotional fragility (I’m actually in pretty good shape), but to emphasise a point before we go any further: this is personal. I don’t just mean for me – I mean for women in general, or for people socialised as women. It’s personal, and it has a deep, heavy weight to it, one that I didn’t even realise until I finally caved under the onslaught.

But for people not affected by it, it seems to be a thought experiment. A mild sense of discomfort, a desire to play “Devil’s Advocate”, to run the numbers, to make a wry face and look offended. They dive eagerly into the discussion, tossing aside heart-wrenching personal experiences, ripping apart horrifying statistics of abuse and suffering, insisting that they and they alone are the logical ones, the sensible ones, and they demand attention right now.

This makes the discussion inherently unbalanced, right from the start. It makes it exhausting for one side, because we are cracking ourselves open to try and get through to people, and there is only so much feeling and horror you can share before you are wiped down to nothing; but the other side is tireless, relentless, and apparently lacking in the ability to shut up and listen.

Be kind. If you don’t know, if you don’t understand, if you need to question and discuss – be kind.

I don’t do well in those kinds of exchanges. I simply don’t have the patience.

But this? This I can do.

The objection appears to be thus: women should not be angry or suspicious of male behaviour just because a tiny minority of men attack women in parks and murder and rape them.

If women are suspicious and scared, if they do things like cross the road when a man is walking behind them, if they carefully assess their exit strategy before being alone with a man, they are – apparently – being awful discriminating bigots because they are tarring all men with the same brush. If they point out that, among men, there is a very common attitude of entitlement to women’s time, attention and bodies, an entitlement that we have always dealt with, and usually tolerated with a smile because the alternative is personally dangerous? How dare you generalise. I don’t have that attitude at all.

If they dare to suggest that maybe raising men the way we do is a problem – and here, I mean limiting their accepted emotional expression to superiority, lust, anger, and other feelings on that axis, and then tightly tying those emotions to masculine identity, and then heavily emphasising the overwhelming importance of gender to their very sense of self, not to mention making it almost psychologically impossible to ask for help when they’re at breaking point?

Well, you can’t say that. That means you hate men.

(I mean, I point out that we’ve tied men in psychological knots socially, because I would like less men to commit suicide, actually, which kind of suggests that I like men, and I would like them to be less miserable, not to mention less homicidal)

Apparently, the only way to treat male violence towards women is as an inevitability, a natural disaster, an unstoppable force. It just happens.

Except it’s not. It’s not an accidental, unavoidable tragedy. It’s an action that someone chose to take. There is agency here.

And we, as women, as apparent potential victims, don’t have any control over that choice, made by people bigger than us, stronger than us, who aren’t limited by assumptions of civilised behaviour.

We can only make choices about our own actions, and it’s a complex mess of risk assessment.

Let’s talk about risk assessment, because if you’re wondering why you’re going to be tarred with the brush of potential threat, you need to understand this.

We’ll start with Type I vs. Type II errors.

MEDICAL EXAMPLE: SENSITIVITY VS. SPECIFICITY

It took me a long time to be diagnosed for Crohn’s Disease, because the sneaky bastard was hiding deep within my small intestine, a location that is largely inaccessible to most diagnostic procedures. If the disease is advanced enough (ultimately, mine wasn’t), it can be seen in a particular kind of abdominal MRI.

Now, an MRI isn’t a statistical test, but it will illustrate my concept nicely, so bear with me.

When we test for things, statistically, we’re generally looking for the effect of one thing on another thing. We’re trying to see if two variables have a relationship.

Our basic assumption, to start with, is that there is no relationship. We refer to this as our null hypothesis.

Then we have to test this null hypothesis. We need to find out if we should accept it (no relationship between those two things, back to the drawing board) or reject it (aha! Something is afoot! MORE TESTING!).

When I go in for an abdominal MRI, my null hypothesis is that I don’t have Crohn’s Disease. That’s situation normal. Nothing will show up. (again, I am stretching this a little. Hush)

The MRI will either give a negative result (null hypothesis true) or a positive result (null hypothesis false – I have Crohn’s).

Of course, these tests have to have options for failure. No test is perfect. If we mistakenly reject our null hypothesis, thinking that something is going on when it isn’t? That’s called a Type I error. If we mistakenly accept our null hypothesis, thinking that nothing is going on, when something in fact is going on? That’s called a Type II error.

In medical tests, the likelihood that the effect really is there when the test says it’s there is referred to as specificity. Conversely, the likelihood that the effect isn’t there when the test result is negative is known as its sensitivity.

Now, an abdominal MRI looking for Crohn’s in the small intestine has a specificity of – effectively – 100%. That means it’s almost never going to make a Type I error. If that test says I have Crohn’s, well, we can be pretty confident that I have Crohn’s and no further testing is necessary.

The test, however, has a sensitivity of about 86%. That sounds high, right? But that means that if the MRI says I don’t have Crohn’s disease, there’s about a 1 in 6 chance that it’s wrong.

The MRI did in fact say that I didn’t have Crohn’s. It came back negative. And it was wrong.

Type II error in action.

So now that I’ve given us a solid personal example of a Type I vs Type II error (in the absence of any actual statistics and tests of p-values, which isn’t really relevant here), we can move on to Basic Risk Assessment.

BASIC RISK ASSESSMENT

As a marine biologist, I’ve embarked on fieldwork where I’m required to SCUBA dive. This involved submitting risk assessment to multiple institutions involved in the project, and I won’t lie, I was genuinely intimidated by the paperwork I had to fill out for this.

But a basic risk assessment rubric requires two primary components:

  • Likelihood
  • Consequence

The issue of likelihood vs. consequence came up in one of my field trips in particular. We were in Tasmania, at Binalong Bay in the north-eastern corner of the island, and we were gearing up for a dive. We’d finally found a place where we could easily access the water, and the local environment looked like it would support the species that we were looking for.

I was halfway into my dry suit when two women walked past and eyed the three half-dressed SCUBA divers. One of them said, “You do realise there’s a shark out there, right?”

We laughed, because we get this all the time. Not a day goes by on a field trip that some winking fisherman doesn’t say “Aw, mate, you better watch out – I saw a shark out there this morning, and he was THIS BIG” while yanking his hands out as wide as they can go. People like to mess with divers. We don’t worry about it.

“Yeah, I’m sure there is,” one of us said (I don’t remember who) with a grin.

“No – really. There was an attack yesterday. A thirteen year old girl was attacked and a bunch of the beaches are closed. You didn’t notice the helicopters?”

We collectively blinked, and looked up. Sure enough, there was a helicopter, apparently patrolling the area in search of a shark.

We thanked the women for their warning, and then had what we later referred to as an emergency meeting of the OH&S committee in the carpark, half-dressed.

We knew – as marine biologists working in Australia, we knew – that the shark in question was almost certainly miles away by now. They don’t hang about. Significant encounters are uncommon to start with (I’ve been diving on the south coast of Australia for 12 years and never encountered a large shark), but repeat encounters are just about unheard of.

We knew – based on experience, statistics, migration studies and the advice of genuine experts – that the likelihood of us encountering a large, dangerous shark in Binalong Bay on the planned dive was very small.

But the consequence, if we did?

There are usually about five levels of consequence in risk assessment rubrics, ranging from “minor” (bruises and grazes, minor damage to property) to “major” (hospitalisation required) to “catastrophic” (death, permanent disability, multiple deaths, etc.).

It’s fair to say that a shark attack on a group of research divers would fall under the “catastrophic” consequence level. Level 5.

Now, when you calculate the risk value for paperwork, you multiply the likelihood by the consequence, and in this way, extremely unlikely events become “high risk” by way of their catastrophic consequence.

We decided not to dive. If nothing else, we’d feel pretty damn stupid in those last awkward moments, and no-one wants that.

The potential consequence was too high. We leaned towards a Type I error over a Type II error.

FINALLY: CONTROLS

Let’s put this together, and we’ll bring in the third factor here in our risk assessment: controls. Controls are necessary in order to bring down the level of risk. We want to reduce the likelihood of the event, or even the consequence. If you’re wearing the appropriate protective gear, perhaps the worst consequence of a particular laboratory disaster is a few bruises instead of death.

We enact controls all the time.

When women assess their personal safety in regard to the risk of male violence, we’re deeply aware that our Type I and Type II errors are unbalanced.

Let’s say that our null hypothesis is that Fred is a nice, normal guy, who honestly has no intention of attacking or raping anyone. Let’s expand that: he wouldn’t even continue to kiss a woman if she pulls away, even if she’s already said yes. He wouldn’t even have sex with a woman who’s passed out drunk. Guy’s a real prince (yeah, I have a bugbear about consent. Fight me).

Our null hypothesis is basically: Fred is not a threat to my safety.

Let’s look at our Type I and Type II errors in terms of consequence.

Our Type I error is that we assume Fred is a threat when he isn’t. This, by the way, is what so many men seem to be up in arms about. They’re furious and angry that women might treat them like potential rapists (or, hey, murderers). That’s the Type I error.

I’ve decided Fred could be a threat.

I enact controls.

Some example controls might be:

-crossing the road if Fred is walking behind me; getting off the train if Fred is making me feel scared of uncomfortable; calling a friend, either to make it clear I have help on the line, or even to come and pick me up; hiding in the toilets; taking out my earphones so I can hear if Fred’s footsteps are coming closer; perhaps making sure that I’m never alone in a room or an elevator with Fred, if I’ve encountered him at a social event; not accepting a drink from Fred-

It depends on the circumstances.

All these are designed to reduce the risk. They involve living in fear, or at least suspicion, and a heightened sense of stress and awareness, any time you’re in a vulnerable situation. The point so many women are trying to make is that we are constantly making these judgements and assessments, and constantly deciding whether or not we have to enact these controls, whether we have to sacrifice yet another piece of our autonomy, yet another moment of a life we’d like to live without fear that someone will decide they have a right to our bodies, to our lives.

It’s tiring living in this kind of interrogative framework.

Alright. Let’s talk about the consequences of our Type I error. I’ve enacted my controls, my risk assessment has said Fred could be a problem, but I’m mistaken. Fred’s apparently a mensch, and not really a threat.

Oh no. I’m wrong. I’ve made a mistake. It happens.

What’s the consequence?

Fred’s feelings are hurt. Fred feels affronted. Fred feels taken aback. He feels frustrated, maybe even angry, that someone has jumped to conclusions about him. Does he really seem like that kind of guy? Really? It’s not fair. He’s never done anything to deserve this.

And I’m sorry, Fred, because in our scenario, that’s absolutely true. You haven’t done anything to deserve this. And it isn’t fair.

But.

Let’s talk about our Type II errors.

Let’s say we’ve decided that we can’t live in fear. It’s all overblown hype anyway. Fred seems decent enough. Who cares that he’s following a little closely? Who cares that he seems way too interested in where you live? And maybe there’s not even anything like that, and he really just does seem okay. You’ve got mutual friends. Maybe he is a friend of yours, or a family member. For whatever reason, you’ve decided he’s fine.

We’ve decided Fred isn’t a threat. He’s not going to do anything. Great! We don’t need to enact any controls around him.

But.

Now we have to talk about the consequences of a Type II error, because if we’re wrong about Fred, it could get ugly. Really ugly. I’m not talking about him being an inconsiderate douchebag who’s disappointing in the sack, or any number of relationship crimes. He could rape you. He could maim you. He could kill you. He’s strong enough – stronger than you. If he decides to ignore your refusal, if he loses his temper violently, the outcomes for you are really, really bad.

They’re level five: catastrophic.

And you didn’t enact any controls, because this is a Type II error. Or maybe you did, just out of habit, and it didn’t reduce the risk enough, or maybe it did and you just got unlucky.

Stepping back and summing up: when a woman is assessing her safety in regard to a particular guy, she has to make assumptions. She runs the risk of being wrong, no matter what those assumptions are, because while some guys give off dead fucking creepy vibes, as a rule, they don’t wear signs or pointy hats indicating what side they’re on. She can be wrong in a Type I sort of way – assuming he’s a threat when he isn’t – and then she’ll enact controls, and he’ll be offended and hurt, because it’s not fair that he should be assessed as a danger when he isn’t one.

Or she can be wrong in a Type II sort of way – and be killed.

That’s what we’re talking about. That’s why this hurts so much. When men start getting angry about women jumping to conclusions about potential rapists and murderers, when they start talking about how it’s unfair and about how we can’t talk about male violence because it’s rude and mean and generalising (in spite of the fact that male violence is a fucking problem), it hurts. Because what they seem to be saying is that it’s okay if we die in parks, if we’re beaten bloody and violated and living in fear, as long as we don’t talk about male violence and offend them.

I mean, those things just happen, right? That’s just how it is.

It’s not as though someone made a choice to do it. It’s not as though it matters why that choice was made or how we can prevent it.

Let me tell you: no one ever made the world a better place by saying that’s just how it is. No one ever fixed a problem by refusing to talk about it, or ignoring the reality.

And if we’re emotional about this, it’s because we’ve been living with this weight our whole damn lives. We’re raised with it. We’re saturated with it, constantly told what we’re supposed to do to avoid it. The statistics on domestic violence are horrific – men we trust, men we live with do this to us (and I am aware that women commit domestic violence, given that I am an actual survivor of one, so spare me that – and it’s a conversation that needs to happen, but it’s not this conversation), but we’re also warned about strangers – men we don’t know, men we can’t see, men we can’t defend ourselves from because there are monsters out there in the dark.

It is impossible to assess the other component of our risk assessment rubric, likelihood, because the cultural saturation, the stories we hear, and our own personal experience simply reinforce the fact that we can so easily be hurt, or killed, and it happens so often. Do we calculate the likelihood of being attacked by a man in a park after dark? Do we calculate the likelihood of it in this park? What about dusk? What if it’s a main street, but it’s late at night? Or maybe we should calculate the risk of a date rape – we’re alone with a man we’ve been our with a few times, and things seem fine – but they’re not, because he thinks a couple of drinks mean yeah, of course. Should we calculate the risk of domestic violence, of the man we married losing his temper and punching us so hard that our brain ceases to function? It is profoundly more likely that we will be hurt by someone we know than by a stranger.

But these specific likelihoods are not accessible to us in the moment.

All we’ve got is a general idea of threat. And it’s skewed. Things that we hear about seem more likely (see “availability heuristic”), and no amount of people shouting not all men is going to make the dark seem safe, or going to make us want to accept a drink from a guy we don’t know.

And if we do decide that the risk is low, that it’ll be okay, that we can walk home at night?

We’re told we don’t enact the right controls. We don’t work hard enough to be safe. We aren’t – fucking hell – situationally aware.

And the reason, dear god, the reason women are so angry about this is that yes, we are situationally aware. Of course we are. Don’t teach your grandma to suck eggs, you condescending muppet. We are trained subtly, from childhood onwards, to fear. To assess. To look for exits. And even when we do everything perfectly, we die, and are told we just didn’t do it right. If we dare to put down the weight, for a night? If we decide we can’t live this way, and it’s a kinder world to live in if we just don’t make those generalisations that are apparently so awful and offensive and unkind? Not only do we die, not only are we attacked and hurt, but then we’re judged for not being more suspicious.

And then quite often we blame ourselves, because we can’t help it, even if we know better, even if we’re enraged and furious and we know that it wasn’t our fault – we blame ourselves. And the trauma deepens. And the world perhaps blames us, and we can’t get help. We can’t get support. We can’t be heard.

Because in that case, we weren’t suspicious enough.

This is why it hurts. You’d rather we suffer and die, you’d rather view those deaths and those attacks as an unfortunate tragedy that just happens in the world rather than as something that is deliberately done to us. You’d rather that this keep happening than talk about the problem, because talking about the problem makes you feel bad. It makes you feel as though maybe you should do something about a “women’s problem”. Because thinking about it as “male violence” makes it your problem.

You didn’t do anything wrong, so you don’t feel you deserve the weight of this problem.

Guess what: I didn’t do anything either. I don’t deserve the weight of this problem either. And at this point, I don’t really care that you feel uncomfortable or generalised about. I just care about getting out of this lose-lose cycle. I care that the little girls growing up now don’t have to perform these kinds of bullshit, imperfect risk assessments. I care that they don’t grow up carrying this weight. I don’t want them to have to learn these controls or solutions that don’t even fucking work. I don’t want them to try to figure out whether it’s their fault somehow when they get hurt.

I… don’t want them to get hurt in the first place. Not like that.

The fact is, there’s no perfect set of controls. There is no winning move in this game. At some point, we need to be able to live in the world.

We need to be able to walk home.

And that’s why we’re furious.

“A Normal Body” And Other Fairy Tales

When I go and see my personal trainer (also an exercise physiologist), or my physiotherapist, or my podiatrist, I inevitably end up apologising for and explaining my body, and how it’s put together.

These people have been treating me for a while, and it’s also literally their job to observe how I move. They know how my body is put together. Their job is to help me move more efficiently, with less pain.

I really don’t have to awkwardly, anxiously explain that my single-leg squat is super wobbly because my right leg has quite noticeable internal rotation and the leg is permanently twisted because years of bad motor habits mean that the bone and muscle have just grown that way. It isn’t possible to correct it – merely compensate for it.

So many exercises look awful when I do them, because my leg rotates inwards. I wobble. My back arches and hyperextends unless I’m looking in a mirror (or having a really good proprioception day. I do have those. They’re amazing, and everything feels easy).

I don’t have to feel awkward and anxious, but I often do.

I keep falling into this trap.

If I do these exercises, my body will move properly.

If I keep working at it, it will work as it is supposed to.

Everything will come together as it should.

I only recently caught myself doing this, and realised how incredibly misguided this thought pattern is. I can’t blame this on my support team – they never speak to me like this or imply that they’re trying to change my body. At some point or other, every one of them has made it clear that the goal is to try and get to the point where my body can do what I need it to do, in the most efficient and least painful way that it can, given that it has a few quirks.

I’ve been unconsciously thinking (up until recently) that there’s one perfect way for my body to move and function, some ideal system that I can get closer and closer to, like the Platonic bone structure and muscle activity that will mean I’m effectively not hypermobile anymore.

Not only will that never happen, but it doesn’t even make sense to think that way.

I have multiple chronic illnesses, and treating them results in conflict between the affected systems.

Core muscle activation is an excellent example.

Strengthening core muscles is a crucial part of managing Ehlers-Danlos / Hypermobility Syndrome. This is the area where most people are a bit weak, leading to back problems and other joint overcompensations – and for bendy people, it’s much, much worse. The collagen connecting our vertebrae is just as stretchy and unstable as the rest of the collagen in our bodies and we are terribly prone to our spines moving in ways that they just aren’t supposed to (not in terms of a Platonic ideal, but in terms of load bearing function).

I also have Crohn’s Disease, and visceral hyperalgesia stemming from that Crohn’s. Hyperalgesia means “too much pain” – basically, my intestines think they’re in pain all the time, even when there’s not necessarily a proximal cause. They’ve become sensitised to pain signals because of the long term effect of the Crohn’s.

My intestines are either inflamed most of the time, or they think they’re inflamed and behave accordingly (massive oversimplification, but work with me here).

It is not recommended that you compress your core if you have Crohn’s Disease, because it will hurt like a motherfucker, and also if you have visceral hyperalgesia, that will feed the sensitisation occurring in that region.

Whenever you tighten your abdominal muscles, particularly the deeper set that wraps around your spine, you are compressing your core.

So. Whenever I try to prevent back pain, I facilitate stomach pain. Whenever I slack off on core compression to ease the pressure on my stomach, I move so awkwardly and the angle of force on my joints is such that I get back pain, hip pain and so on, and simply moving is very tiring because the whole system is just incredibly inefficient in a mechanical sense.

(I’m aware that I’m implying here that I’m fainting away from constant agony. That’s absolutely not the case! My abdominal pain is very well managed these days, and I get plenty of low-level warnings from my joints before it gets unmanageable, so I have time to get my backside into gear and start working out properly – or take a break, if that’s what is needed. It’s really not that bad. I’m just trying to highlight the conflict between the two systems)

This also happens regarding my low blood pressure. I’m supposed to wear compression garments to help with the fact that the large blood vessels in my abdomen are just a bit crap (again, due to those gosh darned stretchy proteins). Compression helps blood move back up my body from my legs, up to my heart and brain when otherwise I’d just end up with exhaustion, light-headedness and brain fog.

Mind you – and you’ve probably figured out the catch – as stated above, deliberately compressing your abdomen when you have inflammatory bowel disease can be uncomfortable. It can also hurt like a motherfucker.

So. I pace myself with the compression garments.

The human body (actually, any complex multicellular organism) is a marvel of interconnected systems and patterns. We marvel at it all the time, in awe of how the hip bone connects to the thigh bone and the thigh bone connects to the shin bone, and it’s led to a bit of a hippy-dippy idea that all these systems will strive to work in harmony with one another, if only we can find that one perfect piece of health advice.

Unfortunately, that’s bullshit.

Body parts do what body parts do, physically, in response to chemical changes and application of force. It’s physics. My spine doesn’t give a crap about my intestinal tract, and my small bowel has no sodding interest in the pain in my hips.

What is right and appropriate for one system is a stupid idea and maybe actively harmful for another.

I could feel defeated by this. I could feel that I’m just fucked coming and going. I could use it as a cover to give up, to say “Well, damned if you do and damned if you don’t, so I don’t even care anymore.” And to be honest, I don’t know that I’d judge anyone else for that response. It’s fair, and it’s human.

Instead, I had this realisation, and I found it empowering.

Because, if that’s true – if there isn’t an answer that will untwist my leg and support my spine and heal my small intestine – then here’s no perfectly healthy, functional body. There’s no perfect ideal in which every part of me will work without rubbing up against the world in some difficult way. There’s no one secret plan to make all the systems work together. You just do the best you can, and work with the systems you can. Your body will do what it can in response to stimulus that it gets from the outside world, or from internal systems; and a lot of that’s not up to you.

What you can do is try to make some of it a little smoother, a little more manageable, a little less painful and awkward.

And suddenly: that little bit that I can do feels even more significant. It’s not one small step on the road to perfection: it’s me exerting some level of control over a difficult situation and experiencing victories that are, relative to what is possible, pretty damn magnificent.

You know what, it takes the fucking pressure off.

I can stop trying – however unconsciously – to make my body normal and just make it work.

 

ADHD Coping Mechanisms and “Masking” Behaviour

Getting a diagnosis of ADHD at age 36 with a PhD and two degrees under my belt has thrown me for a loop, and no mistake. Of course, I increased the intensity of my reading, trying to understand what my brain is doing, why it makes life hard, and how the hell I got this far before I fell apart (i.e.: the past three years have been a disaster from an ADHD perspective).

It turns out that there are a lot of ways that people with ADHD can cope with their problems, mask the symptoms (and I’m still ashamed and embarrassed by a bunch of them, which I need to work through), and generally delay diagnosis. Even qualified psychiatrists can be fooled by these coping mechanisms, thinking that a person is coping a lot better than they are.

Or, to put it bluntly, some of us are very good at putting a brave face on our difficulties, and we don’t even realise that’s what we’re doing. My psychologist didn’t pick up on my ADHD at all, even though a good number of my sessions were about feeling overwhelmed and miserable and adrift because I couldn’t get anything done. She’s been great for me in many areas, but she just didn’t know much about ADHD.

What I’m going to do here is list out the coping mechanisms that I have used to deal with my (undiagnosed) symptoms and get through a PhD in science, and also my own daily life. And… some of those mechanisms were also about hiding how messy and disorganised I was underneath it all, so no-one would see.

The other thing is that most of these coping mechanisms are really hard for someone who has an ADHD brain in the first place, and they have a price.

Without further ado: How Doctor Kate Gets By

1. Redundancy! Backup Plans!

I forget things. Lots of things. All the time. Keys, glasses, phone charge cable, actual phone, wallet, medications and so on. If I’m in the lab, I’ll walk all the way across the building from my desk only to realise I’ve forgotten (a) my new set of samples or (b) my lab book or (c) my headphones (essential for lab work).

Hey, maybe I could “just try harder” to remember things. I could “just pay attention” or “just be more careful” or any of the crap that gets said to forgetful people. Except I literally cannot do that.

Nope. Better to just accept I’m going to forget things, and plan for it.

So I need to set up situations where forgetting things isn’t catastrophic. I can always walk back to get my samples and my lab book. I can get home without my keys (albeit not comfortably). It’s frustrating that I sometimes leave the home three times without what I need for the day (sometimes getting halfway down the road before I have to drive back – like forgetting my gym bag when going to the gym).

I now have two pairs of glasses, one of which lives in my backpack whenever I’m not wearing them (see #2), the other which stays at home or comes out with me when I don’t take my backpack.

For medications I might need to take during the day, I have a set in both my handbag and my backpack, a pharmacopoeia ranging from Telfast to high dose codeine.

I have – I am not exaggerating – five lightning cables. That’s right. I have five phone charger cables, not counting Husband’s, which I could borrow in a pinch. One lives by the end. One in each car. One plugged into my desktop. And one in my backpack at all times.

2. Put things back

This one is really hard for ADHDers, but I’ve basically branded it into my brain. When I have finished with something, if it has a place, I put it back. Keys in the key bowl. Shoes on the shoe rack. Dishes get rinsed and left in the sink because I can’t deal with dirty dish smell. Shopping gets unpacked. Shopping bags either get put back in the car or in the hall cupboard.

I think being a laboratory scientist helped with this – you have to put things away in a lab, or not only will you make mistakes and a mess and slow yourself down, but your co-workers will actually murder you.

The problem with this is that it’s not something that comes naturally to me. It takes time. I’ll forget what I’m doing halfway to the hall cupboard, holding the bag, or stare blindly at the shopping trying to work out what to put away first. I might unpack my suitcase as soon as I get home from a trip – very organised, Kate, very good! – but I do it in an immensely disorganised and slightly manic way. I’ll start putting some things in the laundry and then I’ll see something that has to go in the kitchen and then when I get to the kitchen I’ll see that there’s a bill on the table I need to pay and- then I’ll get back to the bedroom and see the other stuff I was doing, and go on with that. And I’ll be doing this at top speed, too, whirling around the house like a determined tidying tornado.

Things that other people do easily and calmly are hard for me. There’s a lot of standing still and waiting for the thought or the plan to come back to your brain (medication definitely helps with this in a fairly huge way, but it is not magical).

The problem is that I have to do this, to stop the chaos piling up around me. I dread that chaos. It’s horrific and shameful. And there’s another reason to keep it down: see #3.

3. Reduce distractions in your environment

ADHDers naturally tend towards chaotic environments. That mess and disorganisation takes over our lives. Some can find a sort of peace with it, and just accept it, but I have real trouble. I am so much happier in an uncluttered environment. I can’t make be at home with the ADHD chaos. Part of that is that I find all that mess inherently distracting.

Objects and paperwork catch my eye, interrupting my thoughts and reducing everything else to white noise. Books I haven’t put away cause me to stop and think about them instead. Dirty dishes and mugs are just gross and set off some of my aspie sensibilities.

I hate the physical sensation of mess. I hate if I have to move things or step over things to do what I need to do. I want to be able to spread out my arms without bumping into crap. Most of all, ADHDers also tend to be very uncoordinated and clumsy. We bump into things and drop things. Navigating mess is a lot harder than navigating a clear space, and it’s mentally exhausting. It’s why I want to keep my backpack organised and my desk space as clear as possible. The odds of me knocking a coffee onto my keyboard will be greatly reduced, or fumbling around trying to pick something up that’s under something else. I hate dropping stuffs, and I hate that I do it so much when everyone else seems to be able to pull stuff out of their backpack without it going everywhere.

Me? Nope. There’s no dignity at all in how I navigate a space.

So: I put things away. And it’s hard. And it takes way longer than it should. But I do it, because if I don’t: chaos and frustration.

Mind you, because it’s so exhausting and frustrating…

4. Organised “well enough”

In Delivered to Distraction, Hallowell and Ratey recommend that ADHDers ease back on trying so hard to be organised. We can’t do everything. It’s going to be too hard and it’ll exhaust us – but we don’t need to everything. We don’t have anything to prove, here. We just need to be functional. Get organised well enough to do what you need to do.

Turns out I’ve been following this advice for years. I’ll make sure my working desk space is clear, but shove everything into drawers (because it doesn’t have an actual “place” to go and I’m too tired and cranky to figure one out. I find that overwhelming). My lab book (which is supposed to be written out so clearly that everyone knows exactly what you’re doing) has all the information that I need, and that’s it. I store samples in such a way that I know roughly where they are, because I don’t have the mental energy to organise them precisely.

Maybe once a year or so, I’ll go through those drawers and sort them out. Otherwise, I have a pretty rough idea what’s in there, so it should be okay.

5. Muttering to myself

Welcome to my most annoying and yet second-most-effective coping mechanism: I’m an irredeemable mutterer.

My working (short-term) memory is for absolute shit. I’ll forget what I’m doing in the middle of an action. Happens all the damn time.

As it turns out, my auditory memory is… pretty functional. I remember sounds, not actual thoughts or intentions. If I get interrupted by a thought in the middle of an action, but I’m describing what I’m doing to myself, I can use the sound of the words I’ve just spoken to pull me back.

If I repeat a phrase or a number over and over and concentrate, I’m much more likely to remember it. I’ll say the names of my samples when I add them to a PCR, or the coordinate of the well I’ve just loaded, because then if I can’t remember if I loaded it, I’ll remember the sound of B6.

I provide constant running commentary of what I’m doing, or odds are pretty good I’ll forget what I’m doing. So there’s a lot of Oh yeah I need to change the bin as I walk into the kitchen to change the bin because otherwise I’ll walk into the kitchen, forget what I was doing, and get a snack, and then go do something else, and forget the bin entirely.

This can make me a very annoying person to be around!

I try to keep my muttering minimal while there is someone nearby, and I can keep it way under my breath when I’m an office, but without it, I just can’t remember what I’m doing. I was quite flattered and chuffed when my PhD lab mates said they missed me in the lab when I was away, because it was too quiet. I thought they were having a gentle dig and apologised, and then one said, “No, actually, your muttering is kind of soothing, like that’s how the lab is supposed to sound.” Which is a situation I was very lucky to enjoy!

Because if I don’t do this, I’ll go into the bathroom with the intent of moving the wet laundry into the dryer, and instead I’ll scoop out the kitty litter, because I’m in the bathroom now and that was probably what I meant to do, and I won’t remember the washing until the machine beeps again, long after I’ve walked away.

The other advantage (that I have just recently realised) is that for me it’s a kind of verbal stimming, which I find very soothing and comforting. When I’m in an environment where it’s not okay for me to mutter much or I don’t get an opportunity to sing aloud, I find my urge to make weird noises is overwhelming. It’s almost a tic.

6. ROUTINE IS THE BEST THING AND ALSO THE WORST

This is the absolute number one most important coping strategy. It’s basically like a hack for the ADHD brain. Stack a number of habits and tasks together to form a routine, and after a little while it becomes natural. I have a routine at home, just a little one. After breakfast, I go clean my teeth (including flossing and also doing skincare stuff). Get clothes on. Then make the bed and tidy the bedroom.

It is the silliest, tiny thing, but it restores an important space, reduces distraction, and makes sure I floss (and also that I don’t get toothpaste on my clothes for the day, because I brush my teeth in my pyjamas). I find this routine – this particular order of tasks – incredibly soothing. It makes me happy. I get a dopamine hit. I feel like I’ve exerted some small control over my environment. It helps me get out of the house.

At the time of writing (or drafting) this, I’m in Perth for work. The place I’m staying is great, I have everything I need, and it’s a short walk from my work site and there’s even a café on the way to pick up a coffee, but I have terrible trouble leaving for work in the morning. It’s so damn hard. The order of putting on the kettle, making breakfast, laying out clothes, taking medication, all those things, it’s all up in the air. I can stare at my clothes in confusion wondering where to start (in spite of the obvious logic). I should put the charge cables in my bag. I should put the kettle on. I should make my lunch for the day. And I should do this all at the same time.

*head explodes*

I get stressed, so I open up my phone and check my social media. Yeah. That’s a top idea when you have a tendency to get distracted from what you’re meant to be doing. I’ll find a conversation I need to respond to right now, and everything from clothes to breakfast gets forgotten.

I lie awake at night, consciously planning what order I’ll do things in the next day. First, take meds. Wait, no. Refill water bottle. Then take meds. Wash face. Then put kettle on. Then get clothes out. Don’t forget to pack your gym bag.

Over and over, trying to impress it into my memory. And it… does not work well.

Outside of my routine, my coping mechanisms start to fray around the edges.

And I have to acknowledge here: my brain wants to rebel against routine. Often I love it and it’s soothing, I get a sense of control and achievement and I can function almost normally – but then I’ll just get frustrated and angry at the sameness of it all and I’ll desperately want to break away from the structure that I need to function.

But without that routine, without that structure, I’m a semi-functional teenager again, wading through a mid-calf high pile of crap in my bedroom, wondering where my maths textbook is.

7. I drink a lot of coffee

ADHDers are known to self-medicate. Caffeine and energy drinks feature heavily, and I’m no exception. It’s just a good thing I didn’t end up using alcohol, or dope, or cocaine, or any of a number of things I might have turned to. Instead, I drank a shitload of coffee and a bunch of sugarfree V. I had to, because my brain only lets me do a lot of things at the last minute, and I needed to stay awake. I used it in a desperate attempt to clear out the brain fog that made it impossible for me to focus on anything. It helped a little bit. Some of the time. Oddly, I find I’m drinking a lot less coffee now that I’m on medication…

8. Leave things out so you don’t forget- no, wait – deal with it NOW

I try to leave out papers I want to read, or bills that need to be paid, or essentially anything that needs to be dealt with soon. This isn’t too bad now – I have better strategies for ensuring things get done – but basically what I end up with is giant piles of things I mean to deal with and don’t. The fear is that if I put them away neatly, I’ll forget about them – and I will. When they’re not in view, they don’t exist in my brain. Then eventually the mess distresses me more than that concern, and I give up and put them away.

As a note: this is why I pay bills as soon as they arrive. I walk in the door, get out my phone, open my banking app, and pay them right then. I can afford to, so I do it, I write the BPay receipt and the date at the top, and they go on the “to be filed” pile (although, ha, guess how often the filing gets done).

9. Skim Reading and Note Taking

Without note-taking, I’d have been useless in my undergraduate lectures. I need the physical movement of the pen to get me through it. I skim read papers, searching for the key phrases of interest, noting the abstract, the results and then searching for the relevant parts of the discussion. As I’ve discussed elsewhere, reading papers is actually hell for me, so I have to employ a strategy to make sure I get what I need from them.

10. Exercise

So. Apparently exercise is superbly good for ADHD people. It releases a bunch of brain chemicals that help us focus. I didn’t know that at the time, but I suspect this was also one of my coping mechanisms throughout the ol’ PhD. Having the executive function to get myself out of the house and down to the gym was a challenge when I was overwhelmed and distressed, but it was worth it when I could manage it.

When it comes down to it, these strategies mostly work for me, but they are exhausting. They are draining. I feel like I live in this rigid framework of reminders and calendars and plans and lists. Unpacking and tidying takes so long. A lot of mental effort goes into maintaining all this. I resent the hell out of it.

But if I don’t do it, the whole structure just falls apart.

P.S. Yes, this post is way too long. No, I don’t have the energy to edit it. I’ve been meaning to write it all week and if I don’t put it up now, it’s not going to happen. ADHD in action!

 

On Diagnosing Others: Pitfalls, Temptations, and Considerations

The last couple of years have been a glorious roller coaster of diagnosis, treatment, and rapid changes to my quality of life. I started out as a person who was constantly exhausted and in pain and unable to focus on anything, stressed and overwhelmed, watching my life slide away from me while I tried to get things done and failed, needing to rest and work out and rest and work out and everything else fell by the wayside.

It’s been frustrating, miserable, and overwhelming. It’s eaten money, and time, and career opportunities. I leaned heavily on Husband and my wonderful friends to drag myself through it all, trying to find a way to be awake, to not be in pain, to concentrate long enough to succeed at something. And without those friends, and certainly without Husband, I don’t think I’d have reached the end of this ride (not that I’m necessarily at the end, but I have all the big pieces of the puzzle).

And yet, I can’t regret it, because now I understand the shit that my body and my brain are pulling on me.

I understand it; and I can treat it. I won’t ever make my body or my brain normal – that’s neither achievable nor, in many ways, desirable (although I’d kick Crohn’s Disease out without a second thought). What I can do is find medications for the symptoms that respond to medication, and find work arounds for the symptoms that don’t.

And I still have trouble – I’ll always have some trouble – but it’s better. It’s much better.

It’s left me with a niggling problem though.

I want everyone else who has these problems – all of which can be incredibly difficult to track down and diagnose – to get help as well. I want their lives to get better. That’s a trap. Generally speaking, people need to be left to manage their own medical situation, for so many reasons. There’s nothing more infuriating than the tenth person who has asked if you’ve tried yoga for your genetic musculoskeletal disorder – and you’re lucky if that stops at ten people. People want to help, and it’s a right fucking pain.

No. Multivitamins will not fix my autoimmune disease, thank you very fucking much for your heartfelt advice.

I don’t want to be that person. And there’s a natural tendency, when you’ve just been diagnosed with a problem, and when you have a solution, to see that problem everywhere you look. You’ve been given all these hints and clues, and now your eyes can’t help but find them all over the place. The safest thing to do is to zip your lip.

But.

But.

None of these things that I have – the Crohn’s, the ADHD, the hypermobility syndrome – are rare conditions. ADHD is estimated to occur in 2-8% of the population, and symptomatic forms of hypermobility syndrome could be as high as 10% (for varying degrees of severity), and is especially common in women. The overal incidence of inflammatory bowel disease (Crohn’s Disease and Ulcerative Colitis) in the Australian population is much lower, at an estimated 29.6 per 100,000 people (although that estimate was calculated in a 2010 paper). Which makes it uncommon, not rare.

And a lot of people can have these conditions without realising it. They just know their stomach hurts a lot sometimes for no apparent reason, or their vision goes black when they stand up too fast and they get really tired for no apparent reason, and they keep injuring their back or their ankles, or perhaps that they can’t focus or concentrate and they just keep procrastinating – and they feel so horrible and lazy, because why can’t they do things that seem so easy for everyone else?

And all your test results come back normal and nobody seems to believe you. You start to think it’s all in your head.

As it happens, a lot of common issues actually require some very specific tests.

Here’s the problem.

Apart from Crohn’s Disease – which, if not diagnosed, can legit actually kill you, although forms of CD that severe will usually inspire you to get that checked out anyway – these conditions are not going to cause your actual death.

Undiagnosed, unmanaged and untreated ADHD can make you thoroughly miserable and adrift in your life, feeling like you’re wasting your potential and constantly scrambling to keep up.

Undiagnosed hypermobility syndrome can leave you an exhausted, anxious mess with joint pain and freezing extremities who sometimes might pass out, or who might end up diagnosed with an anxiety disorder you don’t actually have (despite near-constant panic), and a whole laundry list of other weird things that turn up in a multi-systemic condition resulting from a defective family of proteins that is genuinely ubiquitous in the body (I will write a post on these other effects at some point).

Undiagnosed mild Crohn’s Disease is unlikely to kill you, but constant or near-constant or unpredictable abdominal pain is a miserable thing, and I have to say, being hospitalised every year or so for recurring abscesses is no picnic. Crohn’s Disease does also significantly increase your risk of bowel cancer, so it’s something you want to be aware of.

Getting these things picked up and sorted out is no picnic. Getting an adult ADHD diagnosis can be expensive and difficult – there’s still a little stigma in the psychiatric community against adult ADHD, and even more against diagnosing women – so you need to do a good deal of research to find a doctor who is even going to be open to treating you. Very few doctors have any understanding of hypermobility syndrome or the consequences it has on blood pressure, or even the severity of the problems that low blood pressure and orthostatic intolerance can cause – so that slides under the radar, and there are very few specialists that deal with it appropriately.

They are very expensive.

As to Crohn’s Disease? By the time I’d got that diagnosed, I’d had a colonoscopy, a gastroscopy, a CAT scan, an abdominal MRI, three fecal calprotectin tests (one of which came back normal) and a pill cam. The FC tests eventually – eventually – suggested a serious problem. A normal result is less than 50. A definitive result is over 100. I got results of 92, 12 – 12! – and 376. In that order. The pill cam eventually showed my Crohn’s, and also revealed why it was so difficult to find. It was so deep in my small intestine that it was beyond the range of the gastroscopy, and – while severe enough to cause very unpleasant symptoms – it hadn’t caused the sort of scarring and narrowing that would show up in an MRI or CAT scan.

And my story – as I understand it – is not uncommon. A lot of people with more severe symptoms have cryptic Crohn’s Disease that hides away.

Not all of these tests are bulk-billed by Medicare. The specialists certainly aren’t, as a rule.

All up, I’m out of pocket a few grand for diagnosis, testing, consults and so on. Not to mention a few non-PBS medications.

The fact is that – again, except for the Crohn’s – there are ways to cope with and manage hypermobility syndrome and ADHD without a formal diagnosis and prescription medication. People who don’t know they have ADHD often do know that they’re forgetful and easily distracted, and they come up with coping mechanisms. People with hypermobility syndrome might notice they feel better when wearing tighter clothes and doing regular core strengthening exercises, so they do that. They might wear bracing equipment when they work out, because they have “bad knees”. They might take various medications for their anxiety (although they might be a bit less effective if the cause of that anxiety is a defect in collagen and resulting blood pressure and adrenaline issues).

It won’t be worth the time and the money for everyone to look into these things.

But. Maybe it is.

What can I do without being an interfering, condescending, git? Given that I’m pretty sure I have a couple of friends with undiagnosed ADHD, and I can think of five women I know who might have hypermobility syndrome (ranging from “hmm, maybe,” to “oh my fucking god, you have this, I’m not even kidding, get thee hence”), it’s a real problem. I’m fortunate that in most of those cases, I’m close enough to these people to be able to say “soooo, this made me think of you, a bit, so, let me know if I’m being a pain but I thought you might be interested…”

But if I’m not close enough? I can’t do that. It’s neither fair, nor safe. People with chronic illness – even misdiagnosed chronic illness – have enough complicated shit to deal with without having to manage my excitable interest in their condition (unless they’re a close friend, in which case for the most part they’ve already signed up to the “Kate is a biologist and gets excited by weird shit, just roll with it until she shows us another cool picture of an octopus.”).

So.

In those cases, all I can do is what I’m doing now.

I can share my experience. I can write about my symptoms. I can write about the symptoms that I, personally, don’t have, but which occur in other presentations of my conditions. I can share what I know about the diagnostic process. I can be open about medication, and be willing to answer questions.

And, sometimes, when I say “…and then that happens…” and someone blinks and their mouth drops open a bit and their response is, “Huh. So that’s not- that’s a thing? That… oh. Wow. Hm.” Or sometimes, they just laugh at me, and say, “but everyone gets that, that’s normal,” and when I explain that actually, no, not so much, there’s another jaw-drop moment.

Then I can direct their attention to resources, if they’re interested, or leave it alone, if they’re not, and they want to process for a bit and do their own research.

This is the best way I can help, without being a git. To talk about myself, and tell my own story, and make it clear that, if you’re concerned, you can ask me about it.

And to talk about how much fucking better life is when you get decent diagnosis and treatment, all the way from being in less pain right down to feeling less like you’ve been going mad because all your test results were normal and you thought it was all in your head.

Chances are it’s not all in your head.

You deserve to be listened to. You deserve help.

Ask away.

Diagnosis Roulette: Formally Bestowed the Title of “Bendy”

I’ve written frequently about how I’m a bendy individual, and how having a defective collagen gene or two has presented a multitude of difficulties and challenges. Ever since a physiotherapist first frowned at my feet and muttered under his breath, “Oh, where do we begin?” I’ve been aware that there’s something not quite right about how my body works.

For a long time, I thought there was nothing that could be done. I figured that all I could do was physiotherapy – strengthen the muscles that support my joints, build up my core strength in particular, make sure that I undertook activities that would train my dysfunctional proprioception (feedback from the rest of my body, knowing where I am in space, balancing).

A few years ago, I learned that hypermobility syndrome, or Ehlers-Danlos, depending on which moniker one ended up with, was a multi-systemic condition. This makes perfect sense. Collagen is a family of structural proteins distributed throughout the entire body. Defective collagen doesn’t just make you stretchy in your joints and skin: it affects temperature regulation, energy levels, immune response, gut function, urinary function, and so on. People with hypermobility syndrome can present symptoms from all of these areas or maybe just one or two.

But I still figured there was no point pursuing a formal diagnosis. It sounded expensive and troublesome.

I got talked around by two people, who pointed out that having a diagnosis would help me access help I needed if I ended up doing something truly wacky to my joints, and also pointed out that there were medications that could help with some of those weird extra symptoms.

Plus, I’d finally reached the point where I didn’t know what to do any more or how to manage the situation. I’d discovered that the day after running, I was wrecked. Absolutely useless. Horrifying fatigue. Full body ache. And I was convinced I wouldn’t be able to run any more, that as a bendy person, I’d be doing continued accumulating damage to my delicate tissues. All the online advice I saw strongly discouraged running. I was pretty devastated. I’ve worked really hard on being able to run, for a long time, and it’s one of my most intense personal achievements: I could never run as a kid. Never.

So, I took the specialist name I was given, I requested a referral from my GP, and I made an appointment.

I went in on a Friday morning, and the friendly nurse asked me a slew of questions about my history of fainting, migraine, allergies and various other things. I was fitted with a blood pressure monitor that I was required to wear for 24 hours as I continue my normal activities (yes, I took it to the gym), and a bunch of electrodes distributed across my torso to monitor my heart rate. This, I was required to wear for 36 hours.

I won’t lie, it was a pain in the fricken’ butt. The blood pressure monitor was constantly beeping whenever it was in a position that it didn’t like, the electrodes needed to be coddled whenever I moved too much, and two weeks and several showers later I’m still finding bits of electrode adhesive clinging to my skin.

It was worth it.

I went in on the Monday morning with the requisite hardware no longer attached to my person, and I spent the next hour and a half chatting to a very enthusiastic man about my entire strange history of illness and pain and discomfort and crappy balance and anxiety and so on and so forth.

Here’s the summary of how this went and what it means:

Actual Diagnosis

Under the pre-2017 diagnostic criteria, I would be readily diagnosed with Ehlers-Danlos Syndrome, Hypermobility Type. Under the new criteria (which are quite weird), I wind up with “Benign Joint Hypermobility Syndrome”, which is a stupid name, as it feels profoundly ­un-benign, and it’s really not just about joints (we didn’t get through all the diagnostic stuff before we ran out of time so it is still technically possible I might qualify for EDS, but he thinks it unlikely).

Sidebar: Dentists

I’m just inserting this here, because it has been a bit useful. People who are bendy and have defective collagen often have quite thin and porous enamel on their teeth (I told you: collagen is everywhere). This makes dentist visits a lot more painful for them than for other people! Add in the fact that bendy people are often highly resistant to local anaesthetic and need more shots (I need 2-3 relative to a normal patient’s single injection), and that often those shots contain adrenaline and bendy people are sensitised to adrenaline (I explain this below), and you’ve got a situation just crying out for panic, pain, misery and tears.

Recently I went to my dentist for the six month clean and check-up, and I told her about this diagnosis. “Aha,” she said. She knew exactly what it meant, was familiar with the effects on enamel, adrenaline tolerance and anaesthetic resistance, and exactly how to deal with it. She’s always been good when I just say I have “sensitive teeth”, but this just made it very straightforward. So now I get the numbing gel (lots of it, and no adrenaline), and also get given a spiky massage ball to fiddle with when sometimes a clean does get briefly painful (which was very helpful. Maybe that has something to do with the ADHD, I don’t know, but it really helped!).

But now, onto perhaps the most overwhelming and life changing consequence of defective collagen.

Low Blood Pressure

One of the key and most significant effects of the defective collagen is low blood pressure and orthostatic intolerance (i.e.: you feel lightheaded when you stand up too fast, sometimes your vision blurs or becomes tunnel vision or goes black or grey, your heart rate ramps up, and sometimes you might actually pass out). I’ve always had that “ah crap, I stood up too fast” issue, and I frequently have to sit immediately back down if I don’t pace myself on it. I don’t even have a choice, my legs just fold. I sit down in the shower. When I was a teenager and in my early twenties, I sometimes had to crawl out of the shower and lie down on the bath mat for a bit.

This effect occurs because the collagen in your blood vessels is too stretchy to effectively constrict, and constriction of your blood vessels (vasoconstriction) is how the blood gets back up to your heart and your brain from the lower half of your body. Now, muscular movement helps with that pumping, which is why I can walk basically forever (or until my muscles or bad feet give out), but I can’t stand still for longer than five minutes (and even five minutes makes me feel horrible).

Low blood pressure makes you lightheaded, often nauseated, and exhausted. Constant low blood pressure results in brain fog, fatigue, sometimes weird pain like that tight pain in a “coat hanger” distribution, from your shoulders up to your neck and jaw (I always thought I’d just been tensing my jaw too much when I ran, but noooo!).

Low blood pressure can cause migraines. It can cause you to be extremely sensitive to cold, particularly in your extremities (I just spent a fortune on skiing socks to wear in my house, and also set up a radiant heater under my desk because I am so unbelievably tired of my feet going numb when I’m wearing two pairs of socks, ugg boots and an electric lap blanket, and the household heater is going). This condition is associated with Reynaud’s phenomenon, where blood vessels constrict in the extremities and fingers and toes turn white and blue due to lack of blood flow. Low blood pressure often means you hate the heat, because your body’s natural response to heat is to dilate your blood vessels, and your already low blood pressure plummets, and you get to feel exhausted and sick all the time.

So cold makes you miserable and causes pain, and heat makes you nauseated and exhausted and you fall over. This is why I have such a narrow optimal temperature range!

Important sub-heading: ANXIETY

Low blood pressure also causes anxiety. This is because when your blood pressure drops, your brain thinks you’re dying, and decides to pump up the adrenaline so you can escape the threat – except there’s no immediate physical threat, of course, and here you are with an unnecessary, constant flow of adrenaline, leaving you with the very clear symptoms of an anxiety disorder, complete with panic attacks. Understandably – and unfortunately – it gets misdiagnosed as an anxiety disorder, and then treatment of it is a bit iffy in terms of effectiveness.

I’ve always had a bit of anxiety, and some days it’s dreadful enough that I basically panic anytime anyone comes near me, and I’ve never really known why. Theories abound – I have some baggage – but this makes sense. And now, when my blood pressure tanks, I have noticed that my anxiety gets a lot worse!

(As a side note: this is why a lot of bendy people become sensitised to adrenaline, and why when we are given local anaesthetics containing adrenaline, we freak out. I start shaking and crying like I’ve just been given the most terrible news, right there in the dentist’s chair. It took me a few tries to figure it out, but now I ask if dentists and doctors would please not give me adrenaline if there is any reasonable alternative.)

Back to Low Blood Pressure

Now, the low blood pressure issue is why I was ending up completely benched after running. Intense exercise necessitates muscle recovery and repair; and that process demands blood. And when you’ve got low blood pressure, and the blood is being redirected elsewhere, well, it’s not getting to your brain.

It wasn’t tissue damage. There’s no actual evidence from actual scientific studies to suggest that high impact exercise like running is going to be a problem for me in the long term. As long as I’m careful and try to avoid injury, I should be fine. I probably shouldn’t take up any contact sports where I’m going to fall over a lot, but I can run.

I can run.

Three Treatments for Low Blood Pressure in Bendy People

1) Get Moving

Exercise is encouraged. It helps raise blood pressure overall, and that’s probably why I’ve found it so helpful on a shitty fatigue day to just go for a walk. It probably takes about 5-10 minutes before I stop feeling like death, but then everything picks up and I start to feel human again. The problem is that for a lot of people who have been struggling with this for a long time, all they’ve learned is that exercise wipes them out and they feel dreadful – so they don’t move at all. However, a slow increase in activity – 20% a week is about what’s recommended – can help raise your baseline blood pressure. Just be very careful not to overdo it (obviously, the right exercise can be helpful for joint support as well, so it’s two birds and one stone).

Given my activity levels – which are pretty high – the specialist said that this wasn’t really a problem for me. I was doing the right things there, particularly as regards physiotherapy, clinical pilates and weights.

2) Granny Knickers, Corsets and Girdles

After exercise, we move on to the next solution: compression garments. Blood tends to pool in the large blood vessels in the abdomen, so it needs to be something that compresses that area.

Essentially, we’re talking shapewear. High waisted granny knickers, girdles, or under-bust corsets (waist shapers) fit the bill. They have to be tight, really tight, to raise blood pressure. Gentle compression to smooth outlines under a dress is not going to cut it.

You shouldn’t wear it lying down (blood will pool in your thorax, not desired), but if you’re up and about a lot, it’s worth giving it a go. I’ve bought a couple of items to experiment and yeah, it helps. It really helps. It’s like I can just let out a breath and relax, as though I don’t have to try so hard to be upright. I didn’t even know I was trying that hard!

They’re not always the most comfortable things, and I have Crohn’s Disease and chronic abdominal pain: compressing my abdomen has consequences (basically an increase in pain!). So I have to pace myself on these.

The other issue for me personally is that the very concept of shapewear – or at least, the way it’s marketed, to try and standardise women’s (and men’s) body shapes – kind of triggers a wee bit of feminist frustration. And yet, very functional garments!

3) Drugs, drugs, all the drugs

Then there’s the final step: medication. You can’t take medication to fix your collagen, or repair your autonomic dysfunction, but what you can do is take medication to raise your blood pressure. These generally fall into two categories: the first increases your blood volume by causing you to retain water, and the second encourages more vasoconstriction (given that your collagen is bad at it, but not necessarily non-functional).

I’ve opted for that second category. I instinctively shy away from the notion of retaining water on purpose. I have a uterus, I know what fluid retention feels like, and I want no fucking part of it, thank you very much (not that I have any evidence that it feels the same). I don’t deal with it well. However, that category of drugs does work very well for a lot of people. I just don’t want to add it to my slew of unrelated hormonal issues.

Where am I at?

How’s it working?

It’s working well. Really. It’s much easier for me to stay awake and upright. I can sit up at my  computer in the evening without wanting to just drag my laptop to bed. I don’t crash after intense workouts in the same way.

Combine this with my ADHD meds and… I’m starting to bear a dangerously close resemblance to a functional human being. None of these meds are magical. I still forget things, even though I have my ADHD meds, and get distracted; I still get really sad, even though I’m on Zoloft for depression; and I still get a bit lightheaded sometimes, even though I’m on vasoconstrictors (although I suspect that’s because they’ve worn off – a dose only lasts four hours, supposedly, and I’m pretty sure I don’t even get that long).

There’s so much more I could write about this. It’s an extremely complex condition and it touches on various aspects of my life, many of which I haven’t even listed or described here. Numerous pains and aches and weirdnesses (like that coat hanger pain that is very unpleasant and I always thought I’d just tensed my upper back and jaw too much) now have an explanation.

I no longer feel like a sooky lala for getting too cold or too hot when other people don’t, or for having sensitive teeth at the dentist, or for needing to lie down at short notice. I just take the assistance I need, and move on.

So. Here I am. ADHD, Crohn’s Disease, Hypermobility Syndrome: fully diagnosed and treatment in progress for all of them. Finally. It’s been a long fucking road.

But I think I can see the end of it.

Postscript: as a side note, while it’s not widely diagnosed or well understood, joint hypermobility is actually extremely common in the population, especially in women. If some of these symptoms sound familiar to you – and I’ll write another post with a few others that might pop up – it’s worth getting it checked out. At the bare minimum, you need a lying down vs. standing up blood pressure/heart rate test.

My Bullet Journal Has Literally Changed My Life

I heard the term “bullet journal” from friends on Twitter, and brushed it off as just one of those things that pops up that I’ll work out eventually. There’s a lot of terminology that just flows past me online.

Then I started watching the How To ADHD videos, and there was one on bullet journals, which made it sound like a good solution to a lot of my problems, listed below.

  1. I forget everything.
  2. I make multiple to-do lists in different places and forget they exist, including-
    1. Post-it notes on my desk at work (multiple)
    2. Post-it notes on my desk at home (multiple)
    3. Word documents on my laptop
    4. Reminder lists on my phone
    5. Entries in my calendar (with reminders)
  3. I can’t work out how long things take even when I try super hard and try to learn from past experience and try to add in a lot of extra time
  4. …so I overcommit and try to make myself do too much, leading to-
  5. Ludicrous stress from overscheduling, leading to-
  6. Collapsing from exhaustion and not getting stuff done

(we’ll set aside the fact that muscular fatigue and low blood pressure mean that me “collapsing from exhaustion” might take a bit less activity than for most people)

I’m constantly trying to make lists of shows I want to watch, books I want to read, music I want to check out, as well as more important stuff like “remember to catch up with [x] once in a while as they’re not part of your usual social crowd”.

So, I bought a nice notebook from Officeworks and got started.

Then I realised it wasn’t small enough to fit in my tiny adorable handbag (fits Kindle, phone, wallet, keys, pens, hairties, lip balm, tiny hand cream, 1x sheet of painkillers). So I went online and looked around for what I wanted and started over.

My bullet journal (a pocket Moleskine)

Filled with stickers and organisational goodness.

I think I’m finally settled in with the process, and here’s what I’ve learned:

  1. I like to make things pretty, but not too pretty

If you search online for bullet journalling pages and guides, you’ll find a lot of really intimidating and beautiful stuff. You’ll see graphic design and hand-drawn calligraphy and some stunning artistic visions. I’m actually pretty minimalist with my decorations as you can see, and making it pretty is entirely fucking optional. It turns out that I like to use washi tape, I like to put stickers in randomly, and I like different coloured pens and occasionally pencils, and that’s it. Most days are just rapid logs vs. journal notes, and that’s just hand-scribbled with black and blue pen.

If I felt the obligation to make it super pretty – if I turned it into a full-on hobby as some people do – I would never keep up with it. It would turn into work. It turns out that, in spite of my desire for things to be pretty and perfect (in which case I would also never actually fucking use it), I can kind of temporarily unhook that part of my brain and let myself be chaotic and semi-random and just drop colours in wherever I like.

A week on holiday

Tasks/notes on the left, reflections on the right. In my defense, I was writing this on an actual boat, hence the bodgy handwriting.

  1. This shit is soothing and mindful as fuck

The part where I let myself scribble and scrawl and paste stickers and washi tape and use different colours is… incredibly soothing. Sitting down to draw out my week planner puts me in a strange, almost meditative, state. I stop worrying and thinking about everything else, and I’m totally focused on what I’m doing. It’s lovely. And again, if I were worrying too much about perfection, it would ruin it for me.

  1. Organised lists are THE BOMB

At first, I found that brain-dumping into my bujo was incredibly soothing. Knowing I could just jot down whatever it was, either on a to-do list or a random page I’d nominated “Books I want to read”, meant that a huge weight fell off me. I have the app on my phone, so that even if I’m just walking around, I can quickly pull it out, brain-dump whatever it is, and transfer it to the appropriate spot in my bujo later. As an ADHD person whose brain never fucking shuts up (although the meds are helping), this is an extraordinary boon.

My packing list for dive guiding

As you can see, I have only done two guided dives since I made this, and also I forgot that I needed fins until the second page.

  1. BUT I THINK OF SHIT I SHOULD DO ALL THE TIME

I quickly ran into a problem where I would write down everything I could think of that needed doing on today’s date, and then panic trying to get it all done because somehow if I didn’t get it all done, I would “fail”. This is the perfectionist bastard part of my personality. So I started a new list, of “things that need to get done but not right now”, and I also started lists at the beginning of each week, being “things that should be done this week some time” – as well as the traditional monthly logs.

  1. Making peace with migration

I think this might have more to do with my new ADHD medication than the actual bujo process, but migration – moving tasks to the next day, the next month, or back to a different time scale – is literally built into the design, so that helps. Feeling like it’s somehow officially endorsed that you might not get all your shit done – or that some stuff doesn’t even need to be written down (like “make bed”) – is irrationally comforting. I’m slowly learning that it’s okay to not get everything on my list done.

  1. My daily to-do lists are getting shorter / more stuff is getting done

I’m learning to keep my daily logging lists shorter – partly because my bujo is a pocket notebook and it is filling up fast! – and my requirements for a day relatively low. It’s funny. For years I’ve known that I take on too much, but it took actually seeing it, visually, to get me to work out how to solve the problem. And I am getting there.

But even when the list is long, a lot of that stuff is… really easy. Things like “make appointment”, which I would put off because I hate using the phone, will only take me a couple of minutes, and since I have a rampant addiction to dopamine (delivered by ticking things off my list) which outweighs my aversion to phone calls, I just get it done.

  1. Habit trackers are freaking amazing

So. This one is almost the best part. It took me a couple of tries to find a format I liked, but… wow. It’s effective. Particularly as there are things that I should do that I forget. For example: Amos needs antihistamines every day, as he has atopic allergies. A habit entitled “Amos pills” helps keep me on track. I also use one for flossing and I swear to god I have flossed every day for the past three weeks even while on holiday. I have a lot of things I track this way: Sunlamp (only in the Dark Months), Supplements, Keto, Exercise.

Habit tracker and Week List

Look at all that flossing. SO MUCH FLOSSING.

I even track “shower”, not because it’s something I think I should do every day, but because I actually lose track very easily since I don’t shower more than 2-3 times a week. Showering is exhausting for me because of the whole hypermobility/low blood pressure issue, and I hate it, to be honest, but I love being clean. I shower after cardio, after diving, after swimming and when I feel really gross. That’s it.

Reminding myself to scoop out the kitty litter every day – that’s another thing that I can easily forget – to the point the Mustrum Ridcully gets irritable and starts defecating in the bathtub overnight.

Mustrum Ridcully Naps in the Cat Hut

Would this cat ever do something so heinous as take a crap in a bathtub when the litter is not pristine? Surely not.

This has made an actual, profound difference in my life, since most of these things don’t take much effort and it’s important that I do them (or at least keep an eye on them: I also have “booze” and “painkillers”).

  1. I actually need two bullet journals

Because I use a titchy notebook, it fills up very fast. Really, I need two of them (two will still fit in my adorable tiny handbag): one for the actual journaling and planning, and one for all my other notes and lists. I’ve filled 145 pages of a 192 page notebook in under two months. I make a lot of lists.

To give you an idea, here are some of my lists:

  • TV shows I haven’t finished that I should watch
  • Movies I want to see
  • Authors I need more of
  • Things to pack for dive guiding
  • Packing list for holiday
  • Blog post ideas (yeah, that’s longer than you might think)
  • Things that need doing but not urgently
  • Fun stuff I could do when I’m at a loose end (because I have trouble thinking of what to do)
  • Computer games I want to play
  • An actual budget
  • Singers and music to check out
  • Physical books I want (as opposed to ebooks)
  • Addresses and phone numbers for all my doctors and specialists
  • Stories in progress
  • Ravenclaw vs. Slytherin (um. Michael and I making fun of each other every time we did something silly when we were on holiday, and Slytherin lost 50 points when Michael broke the tap in our resort room… twice… after I told him how he’d done it and not to do it again… right after as in literal seconds).
  • Scoring for awards that I have judged
  • Notes for stories
  • Blogs and YouTubes I’m interested in
  • Albums I own but should listen to more
  • Things I can do when the power is out (item one is “drive somewhere else”)
  • Notes for stories I’m writing or planning to write (separate page/spread per story) – can’t get too in-depth here, this is just for scribbling thoughts I have when I’m out and about.
  • People I haven’t seen in ages that I should get in touch with

This might give you some idea. This, along with actual phrases for stories and blog posts, is the kind of thing that constantly pops up in my head while I’m going about my day. There’s probably a heavier emphasis on “things I need to do” (like “crap, we should really weatherproof the house” and “wow, the mailbox is extremely gross, I should clean it”) than the other lists.

And the fact that I have built an Index in the front of the bullet journal (one of the key components of a bullet journal) means that I can actually find those lists when I need them. If I decide that one page isn’t enough, I can just pick another blank page in my journal and continue the list. Then I just add the new page number to my index, and I know that list exists on page 46 and page 95 (just for example).

In Conclusion

My bullet journal is a relatively low maintenance way of keeping track of my life, and it allows me a lot more freedom than traditional diaries and planners. I have used those extensively, but they don’t allow enough space for those daily lists and monthly tasks, and they don’t have the option for me to restructure how I’m managing my plans and schedules as I go. If the way I draw out a weekly planner doesn’t work for me, I could just draw out a different one next week, for example. I’ve already fine-tuned how I manage my monthly layout.

Basically, the diaries get very messy, very fast, and they became almost impossible for me to navigate. This way, I have my daily, weekly and monthly lists, and I can populate the small ones from the big ones, and reprioritise as needed. Over time I start to learn how much I can reasonably do in a day, and at the end of the day, if I feel like I haven’t done anything, I can look at my bullet journal and remind myself that I went to the gym, went to a long specialist appointment an hour’s drive away, visited a friend I don’t get to see often, replied to three emails I needed to deal with, scheduled an appointment, and made cookies.

And then I can see that I’m not lazy, just because I didn’t manage everything.

Not lazy, just because commuting and medical shit and workouts take more time in reality than they do in my head.

Not lazy, just because now and then I prioritise my people highly.

Not lazy, just because by the time I got home my blood pressure was tanking, my ADHD meds had worn off, and I couldn’t think clearly enough to tackle the edits on my current novel.

I can use my habit tracker and a flick through my logs to see trends – to see that I usually do things, that I get things done, that I don’t procrastinate nearly as much as I think, to see that my energy levels are getting better as I respond to my medications, to see that I do exercise most days, and I’m not slacking off, to see that I’ve stayed keto for a week now-

So.

It helps me manage my time, and my life, and remember things, and it also helps to combat the negative aspects of my ADHD self-image (I’m unreliable, I’m flaky, I never do anything, I always put things off, etc. etc.).

It’s also fun, what with all the stickers and the coloured pens and the washi tape.

I’ll keep doing it for a while.