Category Archives: ooh! i have a pretty navel

Adjusting to lamotrigine: 25mg

Those who follow me on Twitter will probably be aware that recently I made the decision to start taking lamotrigine, an anti-epilepsy medication which is also a mood stabiliser. The reason I made this choice was that recently my epilepsy, which used to cause minimal problems in my life to the point I didn’t need to take daily anticonvulsants, has escalated somewhat.

Why lamotrigine? My neurologist initially suggested keppra, but this was ruled out when I told him that I am prone to bouts of quite bad depression, and also irritability. Keppra has a tendency to exacerbating both of these things, so we decided on a medication which would not only prevent seizures, but also perhaps lessen my depressive tendencies.

I’m writing about this because I found it difficult finding out much information about the experience of adjusting to lamotrigine from a personal perspective. There’s lists of terrifying side effects, such as STOP TAKING IT IF YOU HAVE A RASH BECAUSE IT MIGHT MEAN YOUR SKIN WILL FALL OFF AND YOU COULD DIE, as well as slightly less horrifying but still unpleasant things like dizziness, drowsiness, dry mouth, bad hangovers on just one glass of wine or tremors. Thing is, these lists don’t really help you know much about how badly it actually affects you, so I found myself asking people on Twitter who were willing to give me information, and this was reassuring. So what I want to do is document the adjusting to lamotrigine experience on my blog, where it’s publicly searchable, so hopefully someone in the same boat as me will find the information they need.

I have been taking 25mg lamotrigine, at night, for a week so far. Lamotrigine has a slow build-up, so I’m taking 25mg at night for two weeks, then 25mg in the morning and 25mg (50mg a day) at night for another two weeks, then 25mg in the morning and 50mg at night for two weeks (75mg a day), and finally up to my full effective dose of 50mg in the morning and 50mg at night (100mg a day). The reason for this slow build up is it means you’re less likely to get the nightmarish skin-falling-off rash. I should stress at this point, that the rash is very rare, but it’s serious enough that if you have any skin rashes, especially in mucous membranes, you should stop taking lamotrigine at once and get your arse down to a doctor.

Obviously, this caused me quite a bit of anxiety, and just before I took my very first dose, I went over my skin in a full survey, looking at places where I had little patches of dry skin or ingrown hairs, just so I wouldn’t panic if I noticed these after beginning to take lamotrigine. Nonetheless, nothing scares the shit out of you more than when it turns out a quite common side effect of lamotrigine is itching, and that this does not mean you have The Rash. I was prepared by a Twitter pal that I might experience some itching, and that antihistamines would stop it, but even then, every time I get itchy, it makes me a little worried. Luckily, the itching was worst in the first three days, and seems to have died down now.

The other side effect that concerned me was the idea of the nasty hangovers. I’d heard horror stories from some people using it that even one glass of wine would give you horrendous three-day-long hangovers. Fortunately, this hasn’t happened to me, and I’ve been drinking around two units of alcohol a day since I started (a little part of me is hoping that the lamotrigine expect me to drink a little and not punish me for it).

Other than this, I’ve experienced a bit of light-headedness, just occasionally. I just feel a little bit dizzy for about a minute or so, before everything is fine again. It’s not very severe, and it’s not even particularly annoying, because it’s incredibly sporadic. I’m also a little sleepier in the mornings than usual, but not so sleepy it makes it impossible to get out of bed.

The thing I wasn’t expecting was lucid dreams. I don’t dream much, but I have been dreaming more with the lamotrigine, and they’re lucid dreams. Disappointingly, they are incredibly boring, mundane lucid dreams. Last night, I dreamed that I was an adviser to the Medicis, but my job wasn’t very interesting, I just had to keep the accounts, and I dreamed vividly of making Excel spreadsheets with a quill and ink. Another example: I had a dream there was a wasp in my room, and I was trying to kill it. I realised it was a dream when I noticed my laundry basket was in a different place to usual.

And finally, I’m not sure if this is a side effect because it’s too early to tell, but my pooping has become somewhat irregular. While it was never very regular to begin with, this last week it’s been either constipation or several mega-dumps in a day. We’ll see if that one stabilises.

So, is it working yet, for controlling my epilepsy. Not really, no. I had a seizure yesterday. However, at present, I’m only on a quarter of the effective dose, and it’ll be another five weeks before I’m up to the full effective dose.

I’ll update, every time I up my dose, and if there’s anything else interesting to report in the meantime. If you want to talk to me about lamotrigine, please do! I think it’s important that we share information. You can tweet me, drop me a FB message, or email me:


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Aphantasia, possibly? TIL that most people don’t mean “mental image” as a metaphor

Content note: this post describes in detail the Prime Minister having sex with a dead animal, and relates an encounter in therapy

There’s been a Facebook post by Blake Ross going around which hit me quite hard. In it, a person talks about their experience with aphantasia, where you lack a “mind’s eye”.

It hit me because I realised I probably have aphantasia.

I’ve gone for thirty years of my life, gladly ticking along, thinking about things, writing about things, describing and remembering things, without ever having questioned that maybe I wasn’t doing it in the same way as everyone else. When I think about things, it’s never visual. I’d sort of assumed it was much like this for everybody else.

For my entire life, I’ve thought that phrases such as “mental image” or “visualisation” were metaphorical, and it was absolutely fascinating to learn that not only was this not true, but this is not true for the majority of people. After all, how can one describe one’s own chatter of thoughts outside of the realms of analogy and metaphor? To me, “mental image” has always meant something that you’re thinking about a lot, while “visualise” meant “think really hard about doing this”. It’s hard to even express how my own thinking works, because language is so set up–as I now understand it–to reflect thinking in images.

To me, my thoughts mostly come in the form of words, feelings and sounds. I can “think out loud”: an inner monologue, often in my own voice. There’s also more passive stuff going on, almost like reading a book that you don’t need to concentrate on–except I don’t see the words, and I don’t exactly “hear” it like a muffled radio–it’s just, I don’t know, kind of background processes which I could concentrate on if I wanted to and I cannot really articulate them how I perceive them, but it’s definitely a mush of words, feelings and sometimes even music. Maybe a little bit like people chatting in a coffee shop, and you occasionally pick up snatches of the conversation going on?

If pushed–for example, by tests checking your ability to visualise–I can bring up a picture in my mind to some extent. For example, the test in this article starts with asking you to picture someone you see frequently. I concentrated hard on visualising my friend, A, and I could eventually bring up something. But it was almost useless to me, not telling me much about what A really looks like. What I conjured up was like a passport picture: it’s arguably a decent likeness, but impersonal and ultimately looking not much like the person really looks. A dim and useless picture, devoid of any connection with the actual person. Instead, when I think about what A looks like without being forced to visualise it, I’d think of it almost as though it were a description of a character in a novel, with little personal quirks like the way A always walks with purpose, like she has to be somewhere very important.

The same is true for, say, visualising somewhere I’ve been before. It takes a lot of effort, though, like I’m squinting with my brain. I can call up a picture, but it is static and flawed, like a photocopy of a photocopy of a photocopy of an already-blurry photograph. Again, though, this information is mostly useless to me. If I wanted to remember somewhere I’d been, it’s far more vivid for me to remember specific incidents that happened in that place, as though they were scenes in a script that I was reading. It also helps a hell of a lot to create a mental image if I’m thinking about a photo I’ve seen of the place, ideally a photo that I myself took.

It explains a lot, if I have difficulties in visualisation, that a round of therapy that used visualisation heavily did not work for me. We did a lot of guided visualisation: my therapist would encourage me to visualise my anxiety as though it were a display in a museum, to visualise taking my anxiety and unknotting it. During these sessions, I would write these scenes in my head, describing in detail what I could “see”, even though I could not see anything. I would add set dressing: the whole thing read like Stieg Larsson in its levels of unnecessary detail. Nonetheless, I actually saw nothing, and didn’t find that therapy particularly helpful.

Luckily for me, my brain seems to do a lot of stuff without me knowing it that helps me function. I don’t know how I’m capable of recognising familiar faces without necessarily being able to visualise them, but I usually am.

I am aware, after reading Blake Ross’s account, that I am less impaired than him: I may not have a mind’s eye, but I have a mind’s ear and can hear music or noises or the sound of someone’s voice. I have the other senses, too, and can summon up a smell or a taste, or a brush against the skin. I also don’t have issues with memory: I can remember incidents, and so forth: they come up almost like diary entries but richer, accompanied by a host of feelings. I also don’t skip the bits in books where there’s lots of description of the setting, because I find it nice to know what a character looks like or the colour of the wallpaper in a cafe, even if I can’t see it myself.

I can appreciate visual art, but I unsurprisingly suck at creating it it. Absolutely fucking suck at it, and I always have. At school, I was asked not to do GCSE Art because I am so fucking shit at art. I didn’t really mind: I always hated drawing and sculpting anyway. I knew it was something I couldn’t do and others could, but I never realised that could be due to my inadequate visualisation ability, because I am dyspraxic and also crap at things like learning sequences of movements (which meant PE was also an unmitigated nightmare) and fine motor skills (handwriting was fucking dreadful, too).

I know I do have visuals without the effort of the mental squint, under certain circumstances. When I dream, I dream with vision as well as the other things that happen in my head. I can even experience visual thoughts when I am on the brink of sleep, and mix it in with my conscious thought.

Sadly, I am not necessarily spared the horror of a bad “mental image”: I may not see anything, but it’s nonetheless horrible. Take, for example, that time David Cameron fucked a pig. I thought about it, almost as if it were a particularly unpleasant scene in a book. I could think about the braying of the crowd, wonder about whose lap the pig whose head he fucked was in, ask endless questions, like was it to completion, and generally feel a sense of utter disgust.

Even as I write this, I realise I am probably doing a godawful job of explaining how things happen in my mind without images, because it’s very difficult in the first place to explain what thought feels like. So what does thinking with pictures feel like? I’m kind of imagining, if my own thought processes are like a bunch of cue cards with salient information on them, that yours are like a Buzzfeed article: mostly pictures, with a couple of words around them.

For me, basically, mental images are not something I find particularly useful, even if I can access them under certain circumstances. I suppose I must have learned to work around not visualising very early on in my life, and it’s something I just don’t rely on at all. As far as I’m aware, this hasn’t affected me adversely particularly. In fact, I wonder if it was a gift all along: I find it quite easy to put things into words, most of the time. A lot of my writing practically writes itself, words tripping from me. Perhaps it’s so easy for me because that’s how my thoughts always looked anyway.

Advance knowledge is power: A trip to the dentist

This is the first post in a short series on engagement and trigger warnings/content notes.
Part 2: The banality of trigger warnings
Part 3: Exposing the true nature of exposure therapy
Part 4: A strange hill to die on

Content note: this post talks about dentists and dental procedures in detail, as well as PTSD and rape.

“It’s going to have to come out,” the dentist said, and my brain squawked fuckfuckfuckfuckfuck.

One of my wisdom teeth had done what wisdom teeth tend to do, and grown in at a decidedly funny angle, meaning that whenever I chewed, talked or smiled, it would scrape against the inside of my mouth, causing regular mouth ulcers. I’d sucked it up and dealt with the pain, because, to be quite blunt, I was quite terrified of having to have the thing taken out. I’d heard horror stories about wisdom tooth extractions, and had hoped against hope that maybe my own gob would behave itself.

The dentist couldn’t just yank it there and then, because he didn’t have his instruments of torture to hand, so I had a week to prepare myself.

I read everything I could on wisdom tooth extraction in that week. I learned about exactly what the procedure would entail, what each step would feel like. I swotted up on aftercare, and what I might end up doing wrong and how to do it right. I looked at pictures of all the tools that would be used and where exactly they would be rammed into my poor fucked-up mouth, because I knew there was no way I’d be able to ask the questions I had during the procedure itself.

When the day came, I was prepared, and I went through with something I’d thought I might not be able to. I wasn’t even particularly scared. It all went exactly to the script. Afterwards, it healed perfectly, because I knew what I needed to do–and more importantly, why.

It’s not an experience I’d care to repeat, and I hope anything else that decides to grow in my mouth has the decency to point in the right direction. But it wasn’t traumatic.


When I was old enough to have my adult teeth, but still young enough to think strange things, I had my first scale and polish at the dentist. I’d had no idea he was going to do that to me, and I assumed it was some sort of punishment for me not flossing diligently enough.

The scale and polish was a huge factor in me going to the dentist as infrequently as possible, just about often enough to maintain my NHS patient status.

A few years ago, my old dentist–the uncommunicative grump who pulled my wonky wisdom tooth–retired and I got a new one. He was about my age, so must have been quite recently-qualified, with his patient sensitivity training still fresh in his mind. Every single thing he did throughout the dental checkup, he told me in advance what he was going to do, and how it might feel. He told me that if I wanted him to stop, I should raise my hand.

Just the knowledge that I could ask him to stop if it hurt, and knowing what he was going to do and when, was enough. I’m a little less dentist-avoidant now. It’s not exactly something I relish, but it’s not traumatic.


I’ve spent 500 words talking about dentists because people find the principles of giving a warning in advance far easier to agree with when one talks about matters of the body–even the body as it interacts with the mind. There’s no objections when you talk about getting a week to prepare yourself before you have a tooth pulled. So why are there objections over giving people who have survived trauma a little bit of a heads-up so they can better ready themselves?

Ultimately, that is all the trigger warning/content note is. It’s a flag which says, be prepared. There’s an asteroid field ahead, captain, engage coping mechanisms!

For me, when I see a trigger warning, sometimes it’s not particularly relevant to me, so I ignore it. Sometimes it is relevant to me, but that doesn’t mean I’ll disengage completely: I’ll make sure I’m in a place to engage. For me, this involves making sure I’m not caffeinated, because a kick of anxiety in combination with caffeine easily translates into a full-blown panic response. If I’ve had a coffee, I might wait an hour before engaging.

That’s the thing with trigger warnings: most survivors don’t simply avoid–they have the advance knowledge to do what they have to do. One survivor might open up a tab with a game they find distracting to play after they’ve read a blog post with a trigger warning. Another survivor might make sure she watches a television show in the strong, comforting arms of her girlfriend after hearing it contains a rape scene. One survivor might start practicing the resilience building affirmations he learned in therapy on a daily basis once again before throwing himself into the rape scene in the set text. Another survivor might steel zerself by taking a beta blocker before ze goes to a class that ze has been warned will be discussing rape.

Each survivor has a unique set of coping mechanisms, but each can only do these things with a bit of advance knowledge. It’s more than a simple choice of engaging or disengaging: it empowers people to choose how they engage.

The debate on trigger warnings has been absent of decent evidence: this is because there’s little to show they’re either helpful or harmful–instead, what we mostly have is anecdotes. Therefore, the question becomes mostly a political one.

Over the next few days, I’ll be looking a little bit more at both the politics and the extant evidence with trigger warnings, particularly looking at the conflation of random exposure with controlled exposure. Tomorrow, we’ll be looking at if it’s really so simple, why does everyone lose their shit?

Part 2: The banality of trigger warnings


This series was made possible by my patrons on Patreon, who give me the motivation to keep on writing. If you found this series helpful, please consider becoming a patron.

2014 in review

Content note: this post discusses sexual violence and police violence

And so we reach the end of the year, and despite promising myself I wouldn’t do this, I am doing one of those icky “look back over the past year” kind of things, I’m doing it anyway (I was also meant to stop smoking this year, and I didn’t).

In truth, it’s been a little difficult to write this because there’s been a huge split between the personal and the political for me in 2014. In my personal life, 2014 has been brilliant. I love, and am loved. I have some financial security for the first time in my life. I managed to get quite a lot of my novel written. Everything’s coming up stavvers. It wasn’t all brilliant, of course. I wounded my fanny and got stalked by trolls.

However, 2014 has been pretty uniformly dire outside of my own personal little bubble, and I’ve had a lot to be pissed off about. Each week since the killing of Michael Brown, US cops have taken another Black life. The situation is also bad in the UK: the same pattern of killing and then lying keeps on and our pigs find ways of murdering without even having to carry guns. I haven’t commented on this much, because it’s not my place as a white woman, but I’ve almost weekly shared some content in my post round-ups which I thoroughly recommend you read. All of it. Take an afternoon.

In the UK, our political situation is looking pretty terrible, and it’s unlikely to change in the near future. With a general election looming in 2015, things are going to become completely insufferable. It’s the media’s fault, of course. The media has a fascination with leaders and white men, so we’ve been presented with two ghastly choices: do want Nigel Farage and fascism, or Russell Brand and the curse of left misogyny, God and some really badly-developed thought? One cannot move without tripping over either of these clowns. Of course, this is a false dichotomy: there’s heaps of possibilities, but a media owned by white men cannot conceptualise something which doesn’t involve dreadful white men flapping their awful mouths off.

The awful people who are already in government are making a right fucking hash of things too. We have Theresa May, determined to murder every single migrant, starting with the most vulnerable, like LGBT women. We have Iain Duncan Smith, who is trying to murder the poor through violently stopping their means of subsistence. They’ve been as nasty as ever this year, but come 2015 we’re unlikely to see any improvement even if the red party get elected.

Meanwhile, men who have been in government are emerging as paedophiles and rapists. A constantly-stalling investigation is ongoing into the child abuse rings at Westminster. Unfortunately, because cops and politicians are in each other’s pockets, corruption keeps cropping up and things grind to a halt again as yet more coverups come to light. I’m also a little concerned about the men who are still in Westminster. Nigel Evans, although cleared, was ruled even by the judge to be a complete fucking creep and were it not for his status, I suspect they may have thrown the book at him.

This has been, overall, a pretty good year for violent misogynists. Rapist Ched Evans waltzed out of prison, and, while Sheffield United chose to do the right thing (eventually) and drop him like the turd he is, it’s still entirely possible he may get to continue his illustrious career at another club, all the while continually proving he has learned nothing about consent. Shia LaBeouf spoke out about his experience of rape… to a near-universal chorus of disbelief from men. These were the sort of men who love to bring up “but men get raped too” when women talk about rape, but nonetheless failed to show any support to a male survivor. We also saw misogynist Elliot Rodger go on a killing spree while men tried to downplay the fact this was directly motivated by misogyny. Meanwhile popular left rag The Morning Star spike an article about violent misogynist Steve Hedley, because the left still hasn’t got its affairs in order there.

2014 has been very bad indeed for those of us with uteruses. In Ireland, many of us heard with horror the story of a dead woman whose body was kept on life support while her family were forced to watch her decompose because she had had the misfortune of dying while pregnant. This ghoulish act of violence was a direct result of Ireland’s absurdly restrictive abortion rights, and the judge only ruled that life support could be turned off because the foetus had no chance of surviving. Meanwhile in the UK, the situation is better, but last month our abortion rights were restricted further as sex-selective abortions were banned.

It was also a pretty bad year for sex workers, with momentum growing for the “Swedish model” which does not do anything to make the lives of sex workers safer, and many sex workers say will make things worse. Transmisogyny, too, continues to run rife, with transmisogynists turning up to picket lesbian pride parades and disrupt feminist conferences.

Alas, feminist movement and resistance is spotty at best. I am hoping, perhaps, that we can get our affairs in order in 2015, because we’re going to need to fight all the harder. For this to happen, we need to drop a lot of the crap we’ve been pulling. We need to inventory ourselves, honestly assessing what we may be doing wrong and where we are complicit in kyriarchical violence. We need to challenge violent thought where we see it, so that we may stand shoulder to shoulder with sisters of all colours, all genders, with our disabled sisters and our queer sisters and our trans sisters. Together, we are many, and we must overcome these divisions in 2015 if we are to stand a chance of winning.

In which I write something for Mental Health Awareness Week

I suppose it’s a great irony that I’ve been having trouble writing something for Mental Health Awareness Week because I’ve been a bit too mental. For most of the week I’ve been bumming around, oscillating between numbness and pretending the rest of the world doesn’t exist which helped significantly. Now I’m trying to write something around the theme of anxiety–this year’s theme–and I am niggled by gnawing worries that what I have to say is probably somewhat fraudulent, that I’m hardly an authority to talk on this, that I’m probably just pretending and and and and

I think it’s safe to say that I get anxiety, and it’s fucking awful. It used to manifest as a collection of largely somatic symptoms in combination with the odd fleeting sensation of “Oh fuck, I’m doomed”. This was particularly bad around the time I quit my PhD. I’d puke. A lot. Even when I wasn’t puking, I could always feel it there, in my guts, twisting them about. I’d also get weirder stuff. Once, every memorable mosquito bite I’d ever had decided to rise back up on my body. It was itchy as all fuck. I remember someone being annoyed by it and handing me an antihistamine. The things went back down before the tablet had even hit my stomach. That was good, I suppose, though it kind of proved to me just how powerful my mind was.

This stopped after I had some mindfulness therapy. I learned, through meditation, to climb into my guts and untie them. Since I had that treatment, the somatic problems mostly went away. Unfortunately, things got worse in other places, because six sessions is nowhere near enough to fix everything.

The symptoms shifted to my mind. Quitting my PhD alleviated some of the problem, because I didn’t have that big horrible insurmountable thing hanging over me any more, but I still have a lot of things to validly feel “oh fuck, I’m doomed” about. And my god, I do. I sometimes wake up far too early, worrying about how I know waking up far too early is really bad for my epilepsy. A lot of the time, a reminder of how economically fucked I am will pop into my head and I’ll end up having every negative thought it’s possible to have all at once. There’s little things people will do that remind me of other things nasty people who did bad things to me did that can ruin my day. I find myself making sure I do things in even numbers because odd numbers make me feel funny and bad.

All in all, I’m not convinced mindfulness worked very well for me, and certainly not in the paltry six sessions I was given.

This story doesn’t have a happy ending. This is all ongoing as I manage the best I can to keep on living. My friends know to offer me two biscuits rather than one. I’m able to do certain things that distract myself: things that require lots of concentration, or things that are fun, or, ideally both. I like to be around people I know as much as I can: if not physically, then digitally. Talking to people about any old rubbish is significantly better than listening to the chattering within my brain.

I suppose if there’s any sort of take-home message, it’s this: anxiety really fucking sucks. It blows. It’s kind of a thing which a lot of people get, often in tandem with other problems too, and the way it affected me is the way it affects some others. The way we talk about mental health often has a requirement to end with the “and then I did this and it got better”, except for a lot of people it doesn’t. It gets tolerable. You find ways to function. You choreograph a dance with your own problems and counter its steps with your own things that work. And I have found mine, sort of.

In which I raise some awareness of epilepsy

Today is Purple Day, a day for awareness and fundraising for epilepsy. In the UK alone, there are about 600, 000 people living with epilepsy, myself included, and it’s still a disability which a lot of people don’t understand. This leads to general stigma, but also a fair few fuck-ups from people trying to help.

When someone is having a tonic-clonic seizure, it looks terrifying. I’d always wondered, upon waking up from one of my own seizures, why everyone was running around like headless chickens and practically snogging me in relief. One time, when I was stuck on an overnight stay in hospital, I saw someone else fitting, and I suddenly knew why. It really does look awful.

Fortunately, a lot of the time, it’s not as bad as it looks. Here’s some really useful advice for what to do, which I’m going to repost here because it’s so important (you should also click the link and watch the video if you can).


  • Protect the person from injury – (remove harmful objects from nearby)
  • Cushion their head
  • Look for an epilepsy identity card or identity jewellery
  • Aid breathing by gently placing them in the recovery position once the seizure has finished (see pictures)
  • Stay with the person until recovery is complete
  • Be calmly reassuring


  • Restrain the person’s movements
  • Put anything in the person’s mouth
  • Try to move them unless they are in danger
  • Give them anything to eat or drink until they are fully recovered
  • Attempt to bring them round

Call for an ambulance if…

  • You know it is the person’s first seizure, or

  • The seizure continues for more than five minutes, or

  • One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or

  • The person is injured during the seizure, or

  • You believe the person needs urgent medical attention

The thing about calling an ambulance is especially important to me.  Most times after I’ve had a relatively uncomplicated seizure, someone has called an ambulance. I have then been carted off to A&E, which is a waste of my time and everyone else’s, because what I really need to do is just go home and have a bit of a sleep because my body is telling me it’s run down.

I also can’t stress enough the importance of putting someone on their side afterwards: I have a tendency to vomit after seizures, and that can be fatal if I’m not on my side. And I have really appreciated having someone around, partly because after seizures I’m usually a bit confused, and partly because it’s nice to have someone around to look after you, because having seizures is really sucks.

All of this is good advice if someone has tonic-clonic seizures and it’s worth reading over and over until it sinks in, because that knowledge could save someone’s life–or even just stop a seizure from ruining their day.

But what if someone has a different kind of seizure? I’ve written before about the other weird stuff my brain does, and how sometimes I get very intense and weird experiences where I’ll zone out for a bit. Partial seizures affect a lot of people, and affect a lot of people in very different ways. With me, I look intensely happy, because most of the time I’m kind having the sort of experience that most people spend a fair amount of money to get drugs to simulate. But other people might do other things, like pluck at clothes, or smack lips, or look not-all-there, or wander around. The general advice here is wait with them for the seizure to stop, and try not to let them walk into anything dangerous while it’s going on. Again, you can find full advice here.

I’ve lived with epilepsy for half of my life: I was diagnosed at 14 when puberty kicked in and my hormones went haywire and I started having tonic-clonic seizures, in clusters, which meant I’d never just have one, I’d be having four or five in close succession. I was in and out of hospital a lot during that year of my life and placed on some pretty heavy medications which made me miserable and slow. I don’t really remember much about the years I was on those meds (Epilim, 1000mg per day), except that sometimes I’d have hilariously dramatic nosebleeds without noticing until everyone stepped away with an expression of howling horror and I’d look down and notice my entire front was covered in blood. On the plus side, it stopped the seizures completely. I came off the meds about two years later, but went back on a far lower dose about three years later, following another cluster of seizures. Again, I didn’t get on well with the drugs, even at a lower dose, and came off them six months later. That year, I went on the contraceptive pill, which seems to have helped a lot: I still get the occasional tonic-clonic seizure, but never in clusters, and the seizures are shorter and I wake up a lot quicker. They only ever happen when I’m seriously run-down, and on the break between packs of pills, so with a bit of self-care and this understanding of seizure triggers, I can manage my epilepsy without meds.

The thing that helps most of all, though, is that people understand. I need people around me to know what to do if I do have a seizure, but also, I need the stigma and the ignorance to go away. Epilepsy can and does affect anyone, and it can affect everyone differently. It’s worth making an effort to learn about it.

Also, since I’ve done my bit for awareness, I might as well do my bit for fundraising. Why not donate a bit of money to Epilepsy Action, who have been a vital source of support and information since I was diagnosed?

While it can probably never be cured, epilepsy can be managed, and we people with epilepsy need your help to make sure we can do it.

Not-Doctor Stavvers, or how I learned to stop worrying and quit my PhD

Content note: this post discusses depression and suicide and disordered eating

Over the last couple of weeks, a discussion has opened up in the media about mental health problems in academia, in particular amongst PhD students. Some point to a culture which normalises mental health problems, accepting them as a feature rather than a bug of the system. Others point to a lack of time, with 60-hour weeks being fairly common. Other factors may include perfectionism, and an environment that just doesn’t care.

Maybe all of it is true. Maybe some of it, maybe none of it. We don’t know, because there is little formal evidence, beyond a few studies indicating higher levels of psychological distress in academics. What I do know is that my own experience chimes strongly with the rest of the anecdotal evidence present. While my experience is squarely in the sciences, I understand that a lot of similar problems pervade arts and humanities research.

Two years ago, I quit my PhD. I was about three and a half years into it, and miles off finishing. It was the best decision I ever made, because it was killing me. I was thoroughly miserable. I seldom ate, and lost a lot of weight, because I had no appetite, just a dull, nagging sense of anxious nausea. Everything that went into my stomach came back up again. I couldn’t sleep, which interacted pretty horribly with my epilepsy as well as my general sense of wellbeing. I pretty much didn’t care whether I lived or died: I took a lot of risks, and my road safety became thoroughly appalling. It wasn’t like I necessarily wanted to be dead, it was more that I didn’t really like being alive at all. I say that as though I had a capacity for liking anything, which I didn’t. I veered wildly between feeling utterly, abjectly miserable and crying in people’s faces; and feeling absolutely nothing except a kind of glassy-eyed ennui. In a way, during that time, I was dead.

Hanging over me were the deadlines. I’d already missed the three years that they say a PhD takes, and so wasn’t getting funded any more. So it was a matter of getting all this shit done while not even being remunerated for my efforts. Even when I was getting paid, it was a pittance. A piddling little cheque which paid the rent, in exchange for my entire life. I’d picked up a bit of marking to do to earn a bit of extra money; on paper, the pay looked all right. In practice, they paid you for how long they thought it should take, rather than how long it actually took. Whoever had calculated that it only takes 15 minutes to mark an undergraduate lab report has clearly never seen an undergraduate lab report, let alone marked one.

Most of the work itself is not fun. Research is heavily romanticised, but in truth, much of it involves staring at spreadsheets, or staring at endless rows of code, or staring at an experiment like a watched pot that never boils. It is tedious as all fuck, and nine times out of ten you are not admiring the pattern that has emerged, but, rather, literally or metaphorically tearing your hair out wondering why the fucking thing isn’t working as it should. The highlight of my days was when I ran Monte Carlo simulations on my data. I could actually take a break for once, letting the computer crunch the numbers while I could spend a few hours sitting outside, trying to remember what my life was like before it became this dull grind.

Everyone I knew was as miserable as I was, everyone I knew was up against the same constraints. We’d keep ourselves going by reminding ourselves why we were doing it: that we were studying something genuinely novel that interested us, and we’d be advancing science by keeping on forcing ourselves into this hellish situation. It rang hollow with me, and I’m sure it rang hollow with the others.

The thing about PhDs is they are a scam. On paper, they are studying a topic that you love, and becoming an expert in it, and generally contributing to human knowledge. In practice, what actually happens is the university gets a research assistant for three years, to work on a project that they want studied that is in some way related to a thing that interests you (but is actually whatever they could get funding for). The university doesn’t have to pay a penny for this research assistant: in fact, they get paid to have you there! I imagine it would be a whole lot easier if everyone just admitted that this is what is happening, but nobody does. And instead, the whole structure gaslights and emotionally blackmails PhD students. It shifts all of the problems we encounter as employees into personal failings: clearly we’re not interested enough in this topic that we supposedly chose, and if we cared enough, we’d want to do the work.

I’d describe a PhD as taking something you love and systematically sucking all of the joy out of it, leaving you a hollow shell forcing yourself to go through the motions. If that sounds a lot like depression, it’s because it is. It’s so indistinguishable from depression, that I am left wondering whether in fact depression is a feature rather than a bug.

The whole system needs radical overhaul in order to stop the relentless march over the edge of despair. Either treat PhD students as workers, and pay them fairly for the work they do and allow them to organise against the litany of occupational hazards they face; or treat a PhD as a topic one loves, and give freedom in how it is researched without the constraints of arbitrary deadlines and appeasement of funders.

Of course none of this will happen, because the problems in our universities are the same as the problems outside of our universities, and capitalism is playing the cunt once again. It demands efficiency, and it turns out what’s in place is one of the most efficient means of producing knowledge.

Getting out was difficult for me, because I had internalised the lies about what a PhD is. It was difficult because when someone walks away from something that is killing them, outsiders sneer, say that they cannot hack it, rather than criticise a system set up to destroy people. It was difficult because I had been in academia for all of my adult life up to that point, and I didn’t have a fucking clue what else I could do with my life, and I’d accumulated very few transferable skills.

But getting out was the best thing I ever did. Yes, I’m still depressed, but I’m eating normally and sleeping all right, and my epilepsy is more under control now. And, most importantly, I’m alive.