Did you hear the one about the autistic counsellor?

My Twitter bio currently reads “Mentally interesting queer with awkward career”. I last edited it a couple of years ago during the general horror of my last episode of depression, referencing the irony of a therapist who couldn’t seem to stabilise their own mental health. But my mood has been much better for a year now: the bio might have appeared during the depression, but it stayed for the social awkwardness, and the emerging suspicion that my long and colourful history might not actually have been entirely caused by psychological factors.

A few months ago, having a slight dip in professional confidence, I tried googling variations on a theme of “counsellor with autism”. All I came up with was a reddit thread of laughably inappropriate jobs: autistic counsellor had the honour of being top of the list. With my new diagnosis, I am even more of a punchline than ever before.

I see why, and I find it kind of entertaining myself. Autism is defined, diagnostically, by social and communication impairments. I have these impairments alongside a degree and a business based on communication skills. People also find it funny because of the idea that people with autism don’t have the ability to empathise, and empathy is the very foundation of counselling.

From my academic studies, I know this is largely a myth perpetrated by poor communication (haha) of research findings by the media. While reading research on central coherence (i.e. super attention to detail, possibly also coupled with difficulties seeing the bigger picture) in autism and anorexia for my thesis last year, I also ended up indirectly learning more about empathy in autism, since a lot of studies research several cognitive traits associated with autism in one go. I eventually came to an understanding on the subject that I shared with someone asking questions on Twitter a couple of weeks ago, which I’ll mostly copy and paste here due to lazinessūüėČ

Given that empathy wasn’t my main research subject, I should make a disclaimer that my understanding might still have some holes I’m unaware of. Having said that, it seems fairly well accepted that empathy in autism is a lot more complex than what is portrayed in the media (well, isn’t everything?!).

Firstly, theory of mind is the concept used to describe the ability to understand that other people also have thoughts. Secondary to this is that those thoughts may be the same or different to your own. This is something most children start picking up as toddlers, but seems to be developmentally delayed in children with autism. I’ve seen a review which suggests it is largely developed in typical kids by age 5, whereas children with autism typically get to the same point by around age 10, although in children with additional learning disabilities or those who are largely non-verbal it can be hard to assess.

Affective empathy is the automatic reactions people have to seeing emotions and pain in others. This seems to potentially be intact in autism. So if someone is crying, I feel pained that they are hurting and my eyes water, which can be a real pain in the arse when I’m working! Anyway, this reaction is what the general public tend to imagine is impaired in autism – the equivalent of not caring if someone is in pain.

Cognitive empathy is what seems to be affected in autism. This is the ability to quickly, instinctively understand why someone thinks or feels the way they do. People with high functioning autism often do develop cognitive empathy, but it tends to be the product of logical deduction rather than the more automatic process in neurotypicals. Logical deduction is a lot slower and more energy consuming, so this leads to slower performance on cognitive empathy tasks, and outside of a lab, lots of going quiet or blurting out something inappropriate in a heated/emotional moment. So, for example, if I’ve upset someone, the reason for their reaction only tends to occur to me later, or after someone else has helped me figure it out. But that’s not the same thing as not caring, or not being upset that I’ve upset someone because I know how that emotion feels and don’t want other people to feel like that because of me, which is more what people tend to think happens with autistic people.

Finally, this is all complicated by alexythymia, which is common in autism. This is a neurological difficulty in understanding what you yourself are feeling, and in explaining this to others. This means that sometimes people with autism might not know that they are feeling bad for someone else, even if fMRI shows the expected pattern of activation for empathic pain in response to someone hurting emotionally. I think I’m alexythymic too, although 15 years in and out of therapy has helped with this quite a bit.

(/end of technical bit)

I knew before my diagnosis that I have strengths and weaknesses as a counsellor. Judging by my long term clients, I work best with people who have eating disorders, people with high levels of autistic traits, and those who have chronic problems with anxiety or depression who want someone to talk to every few weeks rather than a third or fourth stint with IAPT involving someone trying to “fix” them in six weeks and discharge them without support when it doesn’t work again (n.b.: IAPT have their uses, but I get a lot of people who have been through the system repeatedly and have a number of very similar complaints about the process. However, I also recognise that I’m bound to end up with a poor opinion of the service because obviously I never see the successes – they don’t need a counsellor anymore!). On the other hand, I don’t consider myself to be competent, skilled, or experienced enough for trauma work, I get too frustrated on behalf of clients experiencing work-related stress, and I am uneasy working with relationship difficulties. I know my limits and I am comfortable referring people elsewhere if I don’t feel I’m the right person for them.

I am not the therapist for everyone, by a long stretch. But my longer term clients consistently tell me that I “get it”, when no one else ever has. This, to me, suggests ableism at play in my profession. An autistic counsellor is a joke: but then, does everyone really relate best to and feel most comfortable with a neurotypical therapist? As a client, I’ve felt with virtually every therapist I’ve ever seen that I’m continually having to fight against their basic assumptions about what the human experience is: every session is a variation on the theme of BUT IT’S NOT LIKE THAT FOR ME. This is often read as me being defensive, arrogant, in denial, over-intellectualising, and so on – and so the divide widens. Until my diagnosis I had no words with which to back up the basic experience – like my clients – that people just didn’t get me or me them. While I tried hard to figure out what I was doing to make everyone misunderstand me, a small voice in the back of my head complained that actually, people in the caring professions seemed to lack empathy. They just couldn’t put themselves in my shoes.

(Understandably, since my feet are only size 3.5. Which is a very literal interpretation of the phrase. Which is in itself unnecessary to say, since most of you would have got the joke. I’ll stop there before I accidentally use another metaphor and have to deconstruct it. Oh dear.)

So, the world might not be ready to understand how autistic counsellors could possibly exist. However, given personal experience as a client, and professional experience of the people I work best with, and the consistency of what the non-neurotypical minority say to me about their experiences with neurotypical professionals, I put forward the suggestion that maybe the world needs a few more autistic counsellors.

Contextual information

A year ago in August 2015, I was diagnosed with endometriosis after having exploratory surgery. I wondered prior to my operation whether I was making a huge mistake – whether I had such a pathological desire for validation that I would even go under the knife unnecessarily. I thought this way despite knowing logically that I had been tolerating excruciating period pain for 15 years by that point, and that other weird and increasingly debilitating symptoms related to fatigue, my bladder, and my digestive system, had been worsening ever since my periods had come back during weight restoration in 2009. I decided to go through with it anyway, but a part of me remained convinced I was making it up; that I was just oversensitive, exaggerating the problem, or lacking the ability to cope with normal amounts of pain. When I woke up to find my abdomen had four holes instead of the two I’d expected, which suggested the surgeon had indeed found something worth removing, I was so surprised (well, as surprised as it is possible to be immediately after being knocked out with ketamine. Trippy). In the following weeks, my surgery and diagnosis made a huge difference to my mental health. I was kinder to myself, more understanding when I was exhausted or feeling ill, the pain no longer scared me so much because I knew what it was, and having less inflamed mutant uterus lurking around my abdominal cavity had a big impact on my energy levels. It was, also, very validating: the pain, and the cause of it, were demonstrably real. I’d even seen the photographs to prove it.

On Tuesday last week, in the final few days of August 2016, another team of specialists assessed whether I had an undiagnosed condition which had been causing havoc with my life. Again, before seeing them I questioned whether I was just imagining things, looking for easy answers, or trying to find excuses for my inability to function as others do, when really I just needed to toughen up. I suspected the assessors would think similarly of me, and treat me like a time-waster. I wondered why I was putting myself through the risk of encountering unsympathetic professionals again, after last years’ debacle with the CMHT.

Instead, I came away with a diagnosis of autism.

The assessors didn’t just listen to me, they observed how I reacted to questions, how I structured answers, my facial expressions, and my body language. They told me beforehand that if they weren’t certain, they would seek other sources of information on my childhood to confirm or deny. But that wasn’t necessary, because they were very sure. And despite suspecting this for a while now, I was taken aback by the novelty of two NHS professionals believing me on the subject of my brain.

There is a wider conversation to be had about the way society views psychosomatic pain, or desperate, chaotic behaviour driven entirely by psychosocial causes, because these should be treated with equal respect as rogue endometrium and neurological conditions. But after everything I’ve been through and sought help for and been disbelieved or misinterpreted about, and after feeling so alone and scared for so much of my life, I suddenly have context. I have one label with which I can finally form a coherent narrative about my life, rather than 10 disparate diagnoses which hang and cling in the wrong places if left to their own devices, leaving me scrambling to pin and tuck and tie them together into something that vaguely makes sense.

Nothing has changed. I am still the same person I have been for the last 31 years. And yet everything is different.


While I was walking into town yesterday I started thinking, which is always dangerous. I remembered the sense of security and comfort my body provided when I was very ill. My ribs and spine and hips felt like anchors for my flyaway mind; they seemed the most real, solid things in my life, the only things I could really trust or depend on, even as they thinned and began to decay.

Now, I find a sense of what is tangible and safe in other ways. I hug my wife, and my whole nervous system exhales. I walk into town slightly too fast, five minutes later than I’d like to be, with my laptop and half a litre of tea in a flask in my backpack, and despite the weight on my shoulders and the burning in my legs, I feel grounded and secure in my body’s capacity to work and to not just endure this, but to benefit from it. I kneel on the earth at our allotment and weed around the carrots or the shallots, with the sun on my back and my mind talks to itself; of the warmth and the frustration of bindweed and how to organise the argument for my thesis and how satisfying it is to clear away the tangles from a wanted plant, so it can breathe more freely.

The latter doesn’t replace the former. There was something about restriction and emaciation that channelled my anxiety and subdued my mind in a way that nothing else will ever touch. Much like the way I can feel peaceful and content butterfly-spotting in a wildflower meadow, and how that is different to the oblivion of being drunk, and how peaceful and content don’t always soothe¬†as deeply as oblivion, even if we are not supposed to admit to that. However, I know oblivion well now, and I know the way my external and internal lives constrict in tandem with my calorie intake and my waist circumference, and I feel like those are sacrifices I am not prepared to make any longer. I finally have too much to lose to lose weight.

We need to talk about EDA week.

22-28 February is Eating Disorders Awareness Week. This year, the UK is almost in tandem with the USA equivalent, which runs from 21-27 February. So all week, articles about the need to raise awareness of eating disorders and their devastating effects have been popping up in the media. And with a few exceptions, like this article, the majority of coverage has been repeating the same themes: being emaciated is dangerous (but so shocking and sensational, look how many clicks we get if we include photos), the media is harmful (and let’s pretend printing that line means we have no further responsibility to change), teenagers need to learn to love their bodies (and on the next page, Shock as Corrie Star Gains 2 Stone! How To Lose 20lbs In A Month!).

I take no issue with any of those three facts independent of each other. Eating disorders do have an extremely high mortality rate, possibly even the highest of any mental health condition, although I do sometimes wonder whether that would still hold if anyone bothered to pay attention to less media friendly, trauma-related consequences like dissociative identity disorder or certain personality disorders. A related issue is that when people hear this statistic about premature deaths, which varies from 10-20% of people experiencing eating disorders, they automatically think of anorexia and organ failure. In reality, studies such as these two from¬†2009¬†and¬†2011¬†have found mortality rates comparable to anorexia in bulimia and eating disorders not otherwise specified, with suicide being a leading cause of death. Yet this fact doesn’t sink in: not for the general public, where a quick poll of any group no more than conversationally familiar with eating disorders will show most think anorexia is the most common and most severe; and not in the medical professions, where eating disorders are treated hierarchically, with many areas of the UK refusing even outpatient therapy to people with a BMI over 17.

A further problem is the homogeneity of the personal narratives which make it into the media. The general public could almost be forgiven for assuming that anorexia is the most common and most deadly, and that it is the sole problem of white teenage girls from ‘good’ (read: affluent) families, because that describes 99% of stories published by the press. Even someone looking at my current client base might suggest this conclusion, since I overwhelmingly see students whose parents can afford private therapy. However, the problem is far more complex just below the surface.

My average client does have a privileged background, and a pretty stereotypical presentation. Most also have high-achieving parents, and have experienced no obvious trauma or deprivation. Many have fairly ‘simple’ eating disorders (as much as a serious mental health condition can ever be called simple), in which an attempt to eat more healthily or to lose a few pounds resulted in a self-perpetuating behavioural loop of restriction or bingeing and purging, possibly because some people are genetically predisposed to react this way to restrictive or chaotic eating patterns.¬†That doesn’t mean that the assumptions made by the uninitiated are correct, because without exception, their eating disorders cause misery and chaos, none of them are immune to death or permanent disability, and all are confused and distressed by their inability to ‘pull themselves together’ and eat, despite high intelligence, ambition, and motivation. None would genuinely choose to do this for attention, or to look like a model. These are young people in a huge amount of trouble, and they deserve appropriate support and treatment. Luckily, many seem to make a full recovery.

But there’s a vast gap in my practice, as in all private therapy practices; to a large extent, also in NHS services, and certainly in the media. Eating disorders affect people of all ages, nationalities, genders, sexual orientations, socioeconomic groups, and disability status’. I know from personal experience – both my own and that of the people I’ve met through eating disorder forums and blogs – that oppression of minority groups contributes to the triggering and maintaining processes of eating disorders, and hampers accessibility and appropriateness of treatment.

To give concrete examples: trans people are very vulnerable to eating disorders, both because being underweight suspends secondary sexual characteristics associated with gender dysphoria, and because they typically face high levels of stigma and violence in day-to-day life, leading to chronic stress and trauma. People of colour experience eating disorders as frequently and severely as white people, but the attitude that eating disorders are a white rich kid problem stops them and others from identifying the problem, making it much harder to access treatment. People who started out at higher weights are often excluded from treatment on the grounds of BMI even after losing a dangerous amount of weight, and those whose natural set points are higher than average are discouraged from seeking full health in recovery, both by obesity-obsessed clinicians, and by the fact that public narratives of eating disorders overwhelmingly feature young women who are still very thin after weight restoration.¬†Various studies have suggested that people with ‘treatment resistant’ chronic eating disorders are often those who are not neurotypical, or who have been subjected to complex trauma in childhood; people who have been failed by typical treatment. Clinicians with a narrow view of eating disorders as being caused by distorted body image, leading to pathological thoughts, feelings, and behaviours, tend to blame those who don’t respond to treatment as not trying hard enough, being too comfortable in a ‘sick role’, or having a damaged personality. If you restrict or binge and purge because it dampens otherwise overwhelming flashbacks of abuse, if you struggle intensely with sensory difficulties associated with eating and feeling full, if you cannot make anyone around you believe that you really don’t think you’re fat, you’re just terrified of vomiting or choking or of the safe numbers changing, ¬†treatment providers that do not accommodate diversity will most likely fuck you up and then blame you for their short-sightedness.

That isn’t to say that abuse, neurodevelopmental conditions, gender diversity, or other factors associated with oppression don’t affect people who appear on the surface to meet the stereotype. To a certain extent, this was true of me. I am white, I was assigned female at birth, and¬†I’m a bit of a perfectionist who has had the opportunity to attend university.¬†I grew up in a family which struggled to make ends meet, but there was a period during my teens when we were comfortably well off, and my parents did have a go at funding private therapy for me. Again, when I was really unwell seven years ago, I was able to go back to live with my parents, where I didn’t have to work or pay rent, so could afford to seek private therapy. I am uncomfortable when people suggest my recovery is purely due to factors internal to me, like determination, or ‘bravery’, because actually, I was in a very privileged position, being able to take an entire year out from my life to focus on my recovery. If I’d had to work during that period, if I had bills I couldn’t pay, if I had been entirely dependent on the NHS to get me better, I feel it is very unlikely I would have managed to drag myself out of that hole.

This isn’t because the NHS is always incompetent at treating eating disorders, or that being employed is inherently stressful. This is because I didn’t fit into anyone’s model of anorexia. I had a long, complicated history of repeated trauma, self harm, extreme side effects from antidepressants; I had no body dysmorphia, but was still terrified of gaining weight. I never told anyone at the eating disorder unit that I identified as queer, both in terms of sexual orientation and gender identity. I also have a neurodevelopmental condition – a tic disorder – but my myriad other signs of neurodiversity were never picked up or connected to my problems with eating. My fear of gaining weight was driven by associations between numbers and safety, not the way those numbers looked on my body. I really suffered when my hormones started working properly again during refeeding, both because my history of being raped made me very uncomfortable with sexual attention, and because I have never fully identified as female, and my body seemed ill-fitting. I had very little social support, which people involved in my treatment put down as the result of me dropping out of education several times, but in reality was also related to the fact that I really struggle to interpret and join in with social behaviour, and as a consequence have made very few friends in ‘real life’, as opposed to the internet, where it is easier to think through interactions before engaging. The eating disorder unit I went to made attending therapeutic groups mandatory, and my inability to cope in groups, and the staff’s complete lack of awareness of why this might be, led to my discharge at a low weight the first time around. Several years later, I now suspect that I’m on the autistic spectrum, and am on a waiting list to be assessed by the local diagnostic team. Even if it turns out I have high levels of autistic traits but don’t meet the diagnostic criteria, this issue was enough to make my experiences of treatment first punitive and blaming, and then inaccessible.¬†Treating those with eating disorders as a homogeneous group fails so many of us not represented by the clinical and popular idea of what EDs look like.

Hilde Bruch, author of the famous book on anorexia “The Golden Cage”, heavily pushed the stereotype of the young, white, female, perfectionist with rich, overachieving parents. It seems that she made the mistake of assuming her clients, who like mine, could afford therapy, were a representative sample of people with eating disorders. Similarly, the media has a confirmation bias problem, in that journalists seek what they expect: young, thin, white girls with a single episode of illness, hospitalisation, and a supposedly full recovery to a thin body. Eating disorder activism is also populated with young women who fit conventional Western standards of attractiveness, and giving time and energy to activism is much easier for people who have financial resources. That’s not to say that there is no one out there who has gained a platform purely through merit, and I can think of several people who don’t fit the usual mould at all – just that it’s easier if you have contacts and money. This goes equally for parents and carers – conferences, networking, and awareness raising can be expensive and time consuming. The net result is that the dominant narrative about eating disorders is a very narrow story, which does not take into account the way various forms of privilege and oppression intersect to elevate some and render others invisible.

It’s so important for the full diversity of eating disorder narratives to be visible. It would benefit the people who feel uniquely untreatable and invisible; it would extend the public understanding of eating disorders to reduce misunderstandings and myths; and it would suggest to the current powers that be in eating disorder research and treatment that their pet theories are not universally applicable. I don’t know how to change this, although I’m grateful to the¬†internet for giving more people the ability to create a platform and a voice for themselves. Still, online communities are easily dismissed, especially when related to mental health, and when they voice things that people with a vested interest in the dominant narrative don’t want to hear. What we get is emaciated photos and horror stories to shock people into recovery (like that ever works), calculations of how much we cost the benefits system and NHS to guilt us into eating, inspiration porn about celebrities who have overcome their problems and how you could too (if you had that sort of money), articles on body positivity showing well-proportioned women with flawless skin, and magazine editors arguing about whether BMI restrictions on models are necessary or oppressive to the extreme end of the spectrum who are naturally model-thin. This is what I see every eating disorders awareness week, and it is bullshit.

I don’t know what is needed, but more of the same awareness raising is not it.

The best and worst of 2015

It’s been a while, hasn’t it? All the things have been happening, so I thought I would post an update. I’m writing more regularly on my other blog, but I’m not sure I’ll ever abandon this one completely.

I was having a really hard time when I last posted. I still am, to a varying extent. I got a bit of a reprieve part-way through last year, in August, after a diagnostic operation to determine whether I had endometriosis. Having spent most of my life trying to cope with excruciating period pain and IBS, fielding repeated suggestions that it was all a physical manifestation of my anxiety, it was a huge relief to be told by the nurses when I came round that the surgeon had found something to remove. I had small spots on my ovaries and uterosacral ligament, but the biggest patch, and the culprit for the pain, IBS, and other weird symptoms I’d been experiencing, was in my Pouch of Douglas. Post-op, it took me a couple of weeks to recover, but once my stomach muscles had stopped spasming every time I moved (not painful as such, more a kind of whole-abdomen hiccup!), I felt so much better. Not particularly in terms of pain, although the absolute worst, top level, can’t-remember-what-my-name-is-right-now pain seems slightly diminished – but I had so much more energy, and my mood was definitely lighter. I don’t know whether it was the reduction in inflammation (it turns out that bleeding into your abdomen is pretty bad for your health. Who’d have thought?) or the validation and relief of finding out what was causing all the pain, but I suspect both helped.

Apart from surgery, the only recommended treatment to stop it returning is progesterone-based medication to halt ovulation, which I was very wary about for several reasons: on top of the fact that progesterone and depression don’t always mix well, and that ovulating is quite useful if you have fucked up bones from anorexia, I’m not massively convinced by the research. So, my GP put me on amitriptyline, which is used for neuropathic pain as well as being an antidepressant. This was a huge risk, given my usual reaction to antidepressants which target serotonin, and the even worse reaction to those targeting noradrenaline, because amitriptyline works on both. But I’m on a tiny dose (like, less than half the recommended starting dose for depression), and while it’s not done a thing for the pain as far as I can tell, my IBS has all but disappeared. What’s more, because the endometriosis was sitting on/near some important nerves which made my bladder incredibly sensitive, calming those down has let me sleep properly for the first time in years. I didn’t know how sleep deprived I was until I was only getting up a couple of times during the night, rather than the usual 5-10 times prior to the op.¬†I didn’t realise how ill and exhausted I was.

And it’s a good job that I have a bit more energy, because in September I started a Psychology Masters with an incredibly high work load. I’m just about keeping up, which is a bit of a shock because I still kind of expect to drop out of every course I start, despite having finally finished my BA. The course is really interesting though – much of the work necessary for assignments is self-directed, so I’ve ended up familiarising myself with all sorts of random topics, like the supposedly cognitively-enhancing powers of green tea (spoiler: it’s bollocks), the evidence for and against brain training interventions, arguments around genetic and environmental influences in personality development, the historical development of psychology as a science, all sorts.

Properly learning about heritability has been quite eye opening. I spent a good few years insisting that eating disorders were biologically-based, and that trauma/abuse couldn’t play a role in their development. I suppose my own grasp on recovery was so fragile that I had to hang on to the idea that if I just ate enough for long enough, everything would get better – I couldn’t imagine surviving otherwise. My impressively shitty mental health over the past two years has forced me to reconsider, but even if I had remained mostly stable, I think I would have had to let go of that idea at some point. It’s not just my personal experience that contradicts it, it’s delving into the methodological problems inherent in behaviour genetics, learning about gene X environment interactions, reading about the profound effects trauma has on developing brains. Even in the absence of personal experience, science doesn’t support the idea that mental health problems are entirely, or even mostly, based on faulty wiring or unfortunate genes, and there is every reason to believe that trauma can directly cause mental health problems. I know that’s not the case for everyone, but it’s certainly not universally untrue either. I wish I could apologise to everyone I argued with or invalidated in my quest to ignore my own experiences of abuse.

That’s part of the reason I wanted to update this blog. I want it in black and white that my opinion has changed, because I was so strident about this in the past, and I am certain that hurt people. It’s hurt me as well. I’ve spent the last eighteen months with my current therapist trying to undo the damage that not acknowledging the abuse for so long has done. I¬†had it pretty much shoved in my face by an episode of self harm in May 2015 that I almost needed surgery for. In the last few months I’ve finally accepted that I have been profoundly mistreated by many different people at many different points in my life, and trying to deal with the emotions involved without hurting myself again. It’s been incredibly painful, but it’s also helped so much. Now I have a way of understanding the urges to self harm – why the urges reappeared when they did, what sort of things trigger them, which thoughts and feelings act as a warning that I’m about to be overwhelmed by them. I was always missing the context.¬†It’s kind of fitting that 2015 was the year in which a surgical procedure immeasurably improved my mental health, and yet I also realised that my experiences were more important than biology. My body has always been awkwardūüėČ

December and so far, January, have both been hard. More triggers, more urges to re-enact shit from the past, more trying to combine who I have been with who I am and who I want to be, and multiple exams and assignments to keep me distracted in between the existential crises. On the plus side, I’m having great fun (no, seriously, it’s fun!) planning and working on my thesis, I have been married for over a year, and my career is going well. I saw butterflies in 2015 that I’d never seen in Newcastle before. My wife and I have been keeping an allotment since last spring; it was beautiful in the summer, and although having dozens of Large White caterpillars vomit on me while I was pulling them off our broccoli was a low point (fluorescent purple vomit, at that), we managed to grow a pretty impressive amount for our first year.

I’ve leave you with my favourite photo from 2015, from our first anniversary trip to the Lake District. I’m sure I’ll be back at some point.

Lake district

Time for a change

I love this blog. Genuinely, it’s been a huge source of comfort and support for the last six years. My life would be unrecognisable if I hadn’t started writing it – I even met my wife through a mutual friend who I first got to know through blogging! I’m also very attached to the nameūüėČ which is understandable, because it is fabulous.¬†However. This week I started a new blog, where I can be a bit more anonymous and talk about subjects I’m not hugely comfortable reaching the extent of the audience this blog has/has had in the past. If anyone wants to know the address of the new blog, it’s likely that I will be willing to share it, so please email me (my email is that way –> )

Because I have started this new blog due to privacy concerns, if anyone does find a way to discover it without me telling them (unless you follow me on twitter, where I’ve been sharing links), I would be really grateful if you could let me know so I can plug any gaps.

Love to all of you who have read and replied. Even when I’ve not been up to replying to individual comments, they really have been appreciated.¬†I do still intend to update this blog every now and then – certainly no less frequently than I have been doing for the past two or three years!


Hung parliament

TW for self harm (naming specific methods, but not going into greater detail), mention of eating disorder.


I had the idea for this post last week, but then it was more of a thought exercise. Now it’s turned into a debriefing. The original idea would have been preferable.

I thought of another scale. For the last six months or so, I’ve woken up wondering how likely I am to cut or otherwise harm myself that day. Prior to – let’s say, late November – I didn’t think I would actually act on it. I had stopped regularly self harming in the latter half of 2007, when I was 22. Since then, it had been a less than once-per-year occurrence. The very brief lapse in January 2014, during the week following the death of a friend, had been easy to dismiss as a moment of madness when I had good reason to be highly distressed. There was no reason to think it would get out of control again.

I conveniently forgot a couple of things. The latter half of 2007 was when the last major relapse into anorexia started, so the fact that I had also stopped cutting regularly at that point should have told me something. Until last autumn I was still a bit underweight. It wasn’t entirely deliberate: my hunger cues and digestive system are still fucked so it’s hard to eat enough, and after being dangerously underweight for a few years, achieving any definition of healthy seemed pretty damn impressive at the time. Even so, this may have been keeping my anxiety and mood swings dampened down a little, because I’ve felt a lot less stable and able to cope since gaining a few extra pounds. The other thing I managed to ignore was that over the last few years I WAS still self harming on a semi-regular basis when I was upset or agitated, but as I was ‘just’ biting or hitting myself, I convinced myself it didn’t count. Story of my life, really, that mix of denial and defensiveness –¬†I feel like I’ve been running around for the last six years shouting ALL BETTER NOT TO WORRY at anyone who implies concern, only to finally run out of steam and slump in a corner, whispering to myself: okay, fuck. Maybe worry after all.

I spent yesterday afternoon in the accident and emergency department of the city hospital, the first time I’ve had to seek medical attention for something self inflicted since 2007. I felt ashamed enough having to tell people that I had started self harming again at the end of last year, but this was exponentially more humiliating. Nobody else contributed to that – I was worried that the staff would treat me like a time wasting attention seeker (my brain thinks this is true so why wouldn’t other people see it the same way?), but they were all lovely. The member of staff from the psychiatric liaison team was particularly nice, and sent me home with a stack of self help materials and crisis numbers. She emphasised that I shouldn’t put pressure on myself to promise it would never happen again just because I was mortified, because in all likelihood, this particular method of coping is going to be difficult to leave behind now I am minus the eating disorder.

This sort of message gives me mixed feelings. On one hand, even being aware of the likelihood that it will happen at some point in the not-to-distant-future is¬†a huge disappointment to me after many years of very infrequent self harm, so if I’m feeling vulnerable already, the sense of ‘fuck it, it’s inevitable’ could possibly tip me over the edge. But then again, the last six years of investing in the idea that I will never do it again have only resulted in denial, minimisation and vast oceans of shame when I have self harmed, which has the added bonus of making me feel compelled to lie about my actions to preserve my sense of identity as A Recovered (ha) Person who is responsible and stable and not at all crazy.

I think a fair amount of the shame is down to the fact that I don’t really understand my self harm. I don’t mean intellectually, because I’ve been reading books and research on self harm since I was a teenager, and I could give many coherent descriptions of how it might begin/become habitual: neurological processes, the role of attachment and trauma, similarities and differences to addiction, common meanings of behaviours, conditions it is often associated with and why, etc. But the actual internal experience of being an adult who cuts and burns themselves is so very resistant to rationalisation. My experience is one of self-contempt and terror and so much shame I can’t get my head around it.

An example: when does an urge become an intention?¬†A came to A&E with me yesterday, which made so much difference. I’d never had company before; in my teens and early 20s I always chose the right time of day to take myself off to hospital so no one would miss me, which added to the dissociation-inducing illusion that nothing had happened. Anyway, while we were waiting to be seen by the doctor, she started helping me write a harm minimisation plan, so I could do my best to avoid that particular type of injury happening again. One of the stumbling blocks was that I had no idea – even after eighteen years of experience – how to tell when an urge was just a random thought that wasn’t going to lead to anything, and when it was something more serious. I made a guess that if the urge persisted for more than three hours, or occurred on two or more days in one seven day period, I should take it seriously. And I probably should, it seems like a sensible guideline. But intensity, frequency or duration of urges is not at all the whole story. Whether there is any intention to act on them is missing.

I can rationalise being triggered, given my history and my understanding of self harm. It’s not that difficult to find some compassion towards myself when my mind is being bombarded with self destructive thoughts and images. I can even be kind to myself when some part of me feels it needs to self harm for whatever reason. But when thought, image, urge, need or whatever else I have designated as an invasion of my mind that I am not to blame for, merges with my sense of self, and I start feeling as if I want to hurt myself and that I will do it at some point soon, I am disgusted with myself. I start treating myself like I’ve crossed an invisible line from victim of an unfortunate set of circumstances to a calculating waste of space who knows exactly what she’s doing and just isn’t trying hard enough to control herself. A sense of intention¬†means I take all the blame, that I am just a bad person. Never mind if this is true – I’m pretty sure I would never think of other people in the same situation in this way, and I’m sure no one who loves me would condemn me like that either – but that is how I feel.

My experience of intention is strange and nuanced.¬†Going back to the ‘will it happen today’ test, on days when the likelihood seems less than 50/50 (yes/no) it’s still a possibility, but not necessarily – aside from sudden crises – a probability. That’s what around half of the days in the last six months have been like, and I can deal with that.¬†Other days (weeks, months) are more confusing. A 60/40 split is a nebulous, non-specific intention. 70/30 means direct intention, but I still have a reasonable change of being able to distract myself until A comes home. 80/20, in¬†which I will feel reasonably sure it will happen, will ensure a vast amount of cognitive dissonance if I do somehow manage to keep myself otherwise occupied – not harming myself will feel more like an accident than a success. 90/10 means there will be a plan as well as intention, although I will usually keep nagging at outs: do you have to? Do you still have to? Is there anything else you could do? Honestly? Come on, are you really going to do this? At that point I’m unlikely to get answers other than yes, yes, no, yes, yes (and fuck off) – but I’m always aware of a small part of me that’s still arguing.

Anything over equal in the yes direction ensures I will feel awful regardless of how intact my skin is at the end of the day. If I survive in one piece, I will feel like a fake: I didn’t really mean to, it’s not exactly a victory, I just ran out of time, maybe I wasn’t that upset after all, if I *had* to I would have. If I do self harm, I will also feel like a fraud: but surely I wasn’t that desperate, wasn’t there something else I could have done, why now when I was far more upset on [X]day, I know all sorts of other ways to cope with urges, why didn’t I use that knowledge? For every urge I have an almost-equal opposite. If I feel strongly compelled to self destruct, I will drag my heels, pull back from the edge, and then panic if I get to the end of my time alone without having acted on the original intention. If I do act on it, I will panic anyway. Many days I feel like Schr√∂dinger’s cutter: part-way through those bad days I feel I have somehow simultaneously already hurt myself and avoided doing so, and I have no idea which way reality will assert itself until someone else looks at me. It is a huge mindfuck, and¬†I can’t explain it any better.

Thinking about the eating disorder equivalent reminds me that there can be intention in more than one direction at the same time (which is part of what I was trying and failing to explain in my super-short post last week). The quietest that self destructive side has been was when I was originally and deliberately gaining weight; the rest of the past six years has been spent somewhere between 40/60 and 60/40. I’m currently at my highest ever adult weight, but as mentioned previously, I’ve been in a constant battle to get here for years. Some of that time I vaguely accepted I should have probably been few pounds heavier, but didn’t act in a way that made that outcome more likely. Other times I felt like I would really prefer to maintain or to be a few pounds lighter, but acted as if I was trying to gain weight.¬†I don’t mean eating or gaining weight in a totally uncontrolled manner, more like I was being governed by a hung parliament: no part of me had overall control.

I suppose what I’m really trying to do is come up with a convincing argument for forgiving and being kind to myself. I think I’m probably going about this the wrong way, because I seem to be trying to simultaneously berate myself for acting with complete deliberation, and convince myself that I am a blameless puppet, strung to my neural pathways. Maybe I’m going about it all the wrong way, switching between the extremes of free will and determinism. Maybe I’m on the wrong spectrum entirely, and it’s too complex to fit into a philosophical concept. Maybe I’ve just internalised a hundred of the people who had some sort of caring responsibility towards me, treating me with contempt when I was forced to discuss self harm with them.

Maybe I wasn’t ever taught how to manage my emotions, instead, as a thirteen year old rapidly heading into a psychotic breakdown, being forced to make up my own system. And maybe the system of a terrified child doesn’t always age well.

Counting to ten

This year it feels like Newcastle has taken an unusually long time to defrost after winter. I’m not entirely sure if this is an accurate reflection of reality – that we really are missing a few degrees on the average day, and have had fewer of those nice little heatwaves than usual – or if I am just projecting onto the weather, because my mental health seems the same way. This is far from an original analogy, but the depression I experienced last year felt like the psychological equivalent of having lain on your arm the wrong way in bed; waking up to the sense of intolerable, agonising numbness. It seems wrong to suggest that numbness can be painful, but that kind really is. That strange, aching, emptiness, that heaviness, that absence.

I’m being investigated for endometriosis at the moment, due to episodes of extreme physical pain. I’ve experienced that pain on and off for over a decade, and have slowly become familiar with it. I know which conditions are most likely to set it off, the different ways it usually starts, the course it generally takes, how long it lasts. Just to be weird (because my body seems to enjoy that), if we’re going to ten out of ten on the pain scale of holy fuck rather than taking the shorter route to eight and back, I can almost set my watch by the different phases. From lack of awareness to when it passes five and I know I’m in trouble is most often ten minutes, although on very rare occasions that phase can last a couple of hours, taunting me with will-I-won’t-I (end up retching and screaming on the bathroom floor today). From five to eight, another five minutes. If I top out at eight, usually I’ll be fully in charge of my faculties again in twenty minutes. If it keeps climbing to ten, I’ll stay there for half an hour. After forty-five minutes in total it’ll start dropping again, and after a full hour I’ll be back on the sofa, chugging tea like my life depends on it, because my body seems to go into a sort of mild shock. But before I can curl up safely on the sofa, I have to get through the panic that happens when I realise that today my body is not going to stop at five, and the loss of all rational thought past nine. I’ve only found one way to hang on to any sense that it will ever end, and that is to count. Minutes elapsed, minutes to go, where I am from nought to ten.

Without really being aware I was doing so, I started counting in a similar way over the winter, although without any reassurance as to how long I would have to do so. I started counting at eight, and kept half an eye on the daily fluctuations between there and nine-and-a-half. I didn’t really plan to do anything with the information, there was no concrete intention to use it to look for patterns or to report back to my therapist or GP for safety’s sake, I just counted because then I had something to hold onto. If today is an eight, I will be just about in control of my actions. If today day is a nine, I need to keep very still and quiet so the pain cannot see me. I stop panicking and fold into myself at physical nine, and at psychological nine. Nine means regressing to the little, vulnerable notion that if I hide so it can’t see me, maybe it will leave me alone.

Some research¬†(that’s just one study, there are many more) has suggested that psychological and physical pain can activate the brain in similar ways; that neurologically, my sense that depression is similar to my experience of extreme physical pain might be justified. Switching analogies again, the long climb out of the worst ravages of depression feels more like that numb arm coming back to life. It’s slow, painful, and terrifying, and feels as if my neurons are shooting off all sorts of confused, chaotic signals. Any stress sends the whole thing half way back to numb, with bigger and more violent distress signals once I’ve realised what’s going on and removed the pressure again. Case in point: I spent most of last week veering wildly between deadened and panic-stricken while trying to recover from burning myself out with anxiety on Friday 8th, which was distressing for personal and political reasons. There was one point a few days ago when the numbness lifted suddenly, passed through anger, fear, and sadness at warp speed and settled at the highly disturbing sensation that my whole nervous system was on fire, which was just…odd. I would have done anything to make it stop, but luckily it escalated at the exact time I had to leave the house to pick A up from work, so I took the scenic route back to baseline rather than the faster, pointier, methods I am susceptible to at the moment.

I am trying to see the return of any sensation, however frightening, as A Good Thing, a sign that I am coming back to life. But it takes so long, and involves so much pain and humiliation as I fuck up multiple times trying to find something to hold onto. My analogy seems ironic when I consider that the way I was dealing with life before really was treating my brain like a numb arm: acting as if it was any other body part, as if the symptom of numbness was the whole cause, rather than taking into consideration the position I habitually lie in bed. My consciousness might be nothing more than a bundle of neurons chattering to each other in a frustratingly dysfunctional manner, but that conversation has been shaped by experience, in particular by trauma. I wasn’t just made this way, randomly defective, with nothing to blame but my genes. Dealing only with the symptoms makes the numbness worse in the long term, and is clearly¬†not going to work.¬†I’m still not really sure what, if anything, will work. Therapy, safe relationships, talking to people, trying to get in touch with my emotions, grieving past losses – these are all such nebulous concepts. It was so much easier when I thought everything could be solved by eating more and treating my mind like a vicious sadist needing to be policed 24/7.

My psychological pain scale originally consisted of one axis, similar to its physical equivalent: from having no awareness of pain to intolerable pain that is an immediate threat to my life. All I could see then was absence: nought being an absence of pain, ten an absence so profound I felt as if it would kill me. But there are different types of pain. The numbness of depression and the nerves-on-fire of chaotic, awakening emotions couldn’t be more different, but they are not on opposite ends of a scale either. Shame is different too. The shame of writing in a way that makes me feel exposed, the shame of claiming trauma when my head tells me I’m melodramatic and pathetic, the shame of still finding it impossible to disconnect from that shame when so many people have tried to validate my experiences and feelings over the years, the shame of having resorted in panic to some self destructive way of dialling back from nine to short-lived oblivion. Today I’m writing rather than anything else, but there is shame and confusion in the fact that I can’t guarantee the rest of the week. And anxiety: I count anxiety too, and it behaves strangely. This morning, the forecast predicting thundery showers, I walked calmly home from the shops while a massive black cloud bore down, beginning to spit at me. It held at five for the majority of the walk, seven when the rain started, but under control. It spiked hugely when I went to get the washing in, three steps from my kitchen door, no longer raining.

I don’t long for axes on which to plot happiness or contentment or peace. I long for a basic sense of predictability and security which allows me to let go of counting as irrelevant.


I feel frustrated. Not just emotionally; it feels as if I’m stuck in quicksand, and my body is instinctively and furiously struggling to escape, making me sink faster in the process. I keep starting things – movements, thoughts, sentences – and jolting to a stop again, coming to a standstill and staring off into space. This isn’t peaceful reflection or even indecision, it’s more like my brain is attempting to do several opposing things at once, with the result that I go nowhere, but feel like I’m expending a huge amount of mental energy in doing so.

It took me two hours to write that paragraph. Fucks sake.

White-knuckle sobriety

I am currently reading a wonderful book on the neuroscience of attachment and trauma, The Body Keeps The Score by Bessel van der Kolk. I could (I may well) write a whole series of posts on how relevant and helpful I’ve found different ideas from it. I keep finding parts of my life on the pages; specific, eerily accurate details about the way I think, feel, and behave.

I searched my blog, and apparently I’ve never mentioned that the first psychiatrist I ever saw, when I was 16, diagnosed me with an attachment disorder. I do know this is something I’ve spoken about during talks on eating disorders, generally in the context of how my mum felt alienated and blamed by this psychiatrist. I don’t remember him being critical (I thought he seemed very friendly and had an interesting bow tie), but one way in which he definitely slipped up was not explaining his diagnosis to me. Lacking an explanation, like all sixteen year olds recently acquainted with the internet in the very early 00s, I went home and googled (or rather‚ĶJeeved? Binged? Yahooed? I’m not sure Google was a thing I was aware of then) attachment disorders, and I was horrified by what I read. Most of what I found described much smaller children who exhibited severely disturbed or out of control behaviour, who wet the bed and grew up to be serial killers. Anxiety might have exaggerated this memory a little, but those were the basic messages I got from my research. I couldn’t see myself in those descriptions.

The descriptions in the book ARE me. They are more me than anything else I’ve ever come across. Reading this book is like encountering the Minnesota Starvation Study for the first time and being creeped out by how a group of men in the 1940s can have the exact same cognitive and emotional response to starvation as anorexic 23 year old me in 2009. My lack of joy in 2001 was mostly to do with the fact that the internet was more of a blunt instrument back then – what I found was mostly in relation to the type of attachment problems correlated with a diagnosis of psychopathy in later life. A few years later, when I could have found more relevant information, I had had The Fear Of Borderline Personality Disorder Diagnosis put into me by various mental health professionals, and so wanted nothing to do with the line of thought that insecure attachments and chronic invalidation could result in a person who behaved very much like me.

I’m quite grumpy about this. Not that I want a personality disorder diagnosis, but I feel like a lot of my behaviour over the last ten years has been geared towards making sure that no one can ever suspect me of this. As a result, I’ve not talked about how difficult I find making and keeping friends, or not reacting self destructively during arguments with loved ones. I’ve become chronically bitter about experiences in which I was invalidated or dismissed by professionals, because I was so desperate at the time to act as if I was ‘okay’ with being treated like that. I’ve hidden self harm relapses as an adult. I’ve walked around feeling empty and lost and like I have no idea who I am, but been too scared to ask for help for this, instead going to the doctor with specific problems, like my phobia of thunderstorms. I’ve lived my life feeling a weird combination of both numb and incredibly oversensitive/overwhelmed, using self harm, the eating disorder and alcohol to switch when one state or the other becomes unbearable. Part of it was down to the pervasive idea that these sorts of experiences and behaviours can’t be “fixed”; I always wanted to believe that if I just tried hard enough, I could force myself to act in a socially acceptable way, and that if I did that for long enough, maybe all the inner turmoil would just disappear. Fake it ’til you make it.

This didn’t work. This is essentially what I tried to do in recovery from anorexia. I came across the concept of “white-knuckle sobriety” the other day – the AA tenet that if a person uses nothing but willpower to stay sober, they will struggle to maintain their recovery. In The Body Keeps The Score, van der Kolk uses this phrase to explain why, similarly, trying to stay in control of your emotions by sheer force when you have no natural ability to regulate them never ends well. I very much relate to this. For a while, recovery was just as distracting and all consuming as the anorexia had been, and the rigid rules and beliefs I had about recovery gave me something concrete to focus on and cling to when I was feeling unsettled. I was incredibly inflexible and defensive when anyone even gently challenged me, because to my mind, those rules and beliefs were the only things stopping me losing any grip on sanity. And when the immediate process of gaining weight was over I started struggling a lot more. I felt empty and lost, fairly minor stressors resulted in small relapses or self harm, and I was constantly terrified that any strong emotion had the power to knock me so off balance that I’d end up in hospital. As a consequence I kept myself as numb as possible, and am now suffering from all sorts of weird side effects of that. Anxiety was the only feeling I could just about work with, because I’ve had so much fucking practice, so every emotional response I had got turned into anxiety. When I couldn’t cope with anxiety it became some sort of somatic problem: headaches, IBS, dizziness. Those I could medicate. Problem solved.

Except it all broke down last year. Situations relating to my problems with attachment kept cropping up, triggering all sorts of incredibly strong feelings that I couldn’t escape, and I’ve not been able to just swallow them or turn the other way and claim ignorance. As the depression has lifted a little I’ve become less rather than more stable: there have been more episodes of self harm in the last six months than there were in the six years previous, and problems with dissociation and panic attacks have either increased or I’m noticing them a lot more. I can’t just grit my teeth and pretend this isn’t happening any longer.

My current therapist wonders if this is coming up now because the rest of my life is more stable than it’s been in a long time (possibly ever). I have a very part time job I can just about cope with, I am in a supportive relationship, my health is okay, there are no major crises apart from the one in my head. Maybe there have been signs for years, but now is the first time it’s been safe enough to notice them. Maybe now I have the right people around me to help. Maybe.

I just wish none of this was necessary. I wish I could solve all my problems with extra cake.


Insert joke about my blog posts being like buses here. As in, none for ages and then several come along at once, as opposed to being like several tonnes of metal hitting you. I hope.

I was once criticised by a commenter for retelling the same stories over and over again. No point denying it – I do. I find it helpful to pick out different facets or feelings of various experiences I’ve had, because goodness knows I’m more than averagely rubbish at actually processing things as they happen to me.

This post is one of those retellings. This is something I wrote this afternoon after therapy, about why this week has been so difficult, particularly in regards to self harm urges. I didn’t add to my last post that actually, the depression has been slowly lifting for a few weeks now. This latest crisis was set off by a specific comment someone made to me last Friday, which triggered remnants of the PTSD I didn’t even realise were still lurking in my head. So now I know, apparently. I’m posting what I wrote here because my therapist is off on holiday for a fortnight now, and I want to let go of it rather than sit on it all that time, if you know what I mean. But just to say, posting this is more about what I need to do with it than wanting it to be seen/read, so if no one feels up to graphic descriptions of self harm on this fine Thursday afternoon, that’s okay with me.

If you do, TW the size of that bus for rape and self harm.


“Your hair looks really nice today”.

At the moment, my hair is much longer than I usually allow it to grow. This is not intentional, I’ve just forgotten to care recently. People tell me it makes me look younger than thirty, although this is not something I particularly want. Compliments about my appearance, especially from men, make me feel uncomfortably vulnerable. He is twice my size, and he could easily –

I don’t know if sleep is the correct word. It seems obscene to think that I could have fallen asleep on this floor, in this room, with these people. If I was capable of sleep, does that make me complicit in this, somehow? It is possible that after the incredible pain and terror I just passed out. It’s possible that my body is trying to play dead.

They think I’m asleep. I lie rigidly still and keep my eyes closed, although pretending to sleep didn’t stop them mauling me earlier. I am prey in the lions’ den, and if I play dead, they might lose interest. I feel subhuman, incapable of thinking in sentences, nothing but fear and instinct.

“She’s beautiful. Her hair is beautiful”.

Two feet away they talk about me quietly, as if I am a delicacy she has dragged home for him to eat. What’s left of me is equally disgusted by them, and by myself. My appearance – an immature, childlike eighteen, long curly hair, the fucking hair – I want to rip it out. My inability to foresee this, when now the way in which I have been groomed over the last few weeks seems so laughably obvious. My physical weakness. The predisposition of my nervous system to freeze when others would fight or take flight. I should have, I should – I don’t know. I do know that all I have done has been wrong, and now I might be dead.

I have never been so alone. I didn’t bring my bag, with my phone and my money and everything else I’d need to escape. I left it at her house. She said just a couple of drinks, and we’ll go back to mine. I want my bag, I want my mum, I don’t want to die, I –

Later, safe at home, I reconsider. Now I wish they had killed me. I numbly weigh up the benefits of dying at the hands of others, a blameless victim. Now all I can think about is death and if I kill myself, people will be so angry. But surely I can’t survive feeling this way. I am just as trapped, just as desperate, just as alone as in that tiny room two towns over. Not physically: my family are downstairs, my friends at the end of a text message or email. But I still can’t think or feel or talk, and my head is full of static.

I retreat to my cave but there are no wounds to lick, because what they did to me only survives in my head. I ritualistically go about making the damage visible. I start with my right leg. I come home from college, mechanically choke down my dinner, and go up to my room. I switch on my television. I cut myself one hundred times, in counts of ten, with pauses in between tens. The next evening the number is two hundred. Three. Four. Five, then seven-fifty, and finally one thousand. There is no room left on my leg, so my right arm and stomach are recruited in service of my sanity. The television stays on while I try to sleep, limbs wrapped in towels. After a week of these evenings it hurts so much to walk that I don’t have to cut myself any more. Nobody stops me. Nobody rescues me. I learn just how alone it is possible to be, and I have my hair cut shorter than I’ve ever dared.

Years pass, and every time I try to squash this vast and shapeless horror into a coherent narrative I find myself more able to remain present, to anchor myself to reality so I don’t float away – into the carpet, or the painting behind the latest therapist’s head – or go home and recreate the carnage I inflicted on myself after the fact. And sometimes it can be months since I last thought of it. Sometimes the anniversary passes and I almost forget.

And sometimes someone makes an innocuous comment about my hair, and ice runs in my veins and I shake, and I am confused and disoriented for days. I feel so strongly compelled to re-enact my original reaction to being raped – the television, the counting, the defining of my boundaries with sharp edges. It’s not something that can be argued with, or rationalised, it just needs, or thinks it does. The cognitive dissonance created by not going along with this is intense.

I try to wait it out patiently. And I think about cutting my hair.


Consider this a heads up: I will be talking about self harm in this post.

I often find that talking/writing about things I’m struggling with makes them easier to manage. There are several reasons for this that I can think of: it helps me get my thoughts all in a row; sometimes trying to make things that are confusing to me, coherent to other people, makes more sense of them to me too; responses from other people who give a crap are always appreciated regardless of whether I’m looking for feedback, advice, or just “wow, that sucks, sorry to hear it”; and finally, I am prone to keeping things to myself, so making an effort to communicate sends my brain the firm message that actually, the world does not end if I talk. Writing my last post and the reactions to it genuinely helped during the worst phase of the depression. It was like realising I’d been carrying around all this incredibly painful muscular tension, and deliberately relaxing. Not in the way of Hollywood-style catharsis, not that I got up the next morning and the birds were singing – I mean, I just hadn’t realised how isolated and alone I felt, how hard I was finding it to cope by myself, and indeed how fucking obvious it was that this didn’t have to be the case. But brains are strange creatures, and for a supposedly intelligent person I do seem to need reminding on a very regular basis that I don’t have to carry everything myself.

I think part of how this forgetting happens is related to feeling like I say more than I do. Sometimes I feel like I do an awful lot of ranting on social media sites (particularly Twitter). But often, I look back through my recent tweets or updates and realise I haven’t been nearly as outspoken or open as I thought. Because my fear of the consequences of leaving myself to stew in my thoughts for too long is very strongly counterbalanced by my fear of clients finding me on social media, I often come away from attempts to talk about something difficult feeling like I’ve said too much and too little all in one go.

This is definitely the case with self harm. I know I’ve communicated my annoyance about the lack of focus on/service provision for people over the age of 25 (or even 21) who self harm. I have retweeted and favourited and even gone as far as posting something on Facebook about Self Injury Awareness Day (tldr: ¬†I hate ‘awareness’ events. Too many myths and stereotypes get reinforced, and they always end up being about a population rather than for them. Ooh, look at all the skinny/scarred people in the media this week, how interesting, I feel so much more aware of this issue now. NOPE forever). But I can count on one hand the number of people who knew prior to that FB post that the last time I cut myself was just a few weeks ago in January this year, and even fewer know that I would probably be writing ‘yesterday’ (or even ‘this morning’) if I hadn’t managed to get my arse out of the house to meet a friend at the last minute, and then seriously ripped the contents of my brain to shreds with my wife’s help in the evening.

It’s sad how surprised I was when I started cutting again at the start of that last relapse early on in December last year, like somehow being a proper grown up with a proper job and a wife should make me invulnerable to such things. It’s not something I ever would have said, or even consciously thought without correcting myself. It’s more like internalised stigma, a result of slowly, over eighteen years, absorbing from various institutions and authority figures the rhetoric that people who self harm are attention seeking, a waste of NHS resources, copycats, stupid teenage girls, over-privileged children who need to grow up, spoilt idiots who should be sent to see true hardship (“think of the starving children in…”), people who don’t try hard enough to cope or to control themselves, people who are hopeless and pathetic. The internalised voice of all those consultant psychiatrists and newspaper articles and ignorant teachers tells me, to bastardise Dickens, that if they want to kill themselves then let them do it, and reduce the surplus population. This is what I have been taught to believe about people who self harm, and although it doesn’t at all tally with my experience or what I know of friends’ experiences, it is surprisingly hard to unlearn.

This semi-conscious shame stops me being specific when I vaguebook something about having a hard day, when what I mean is that I’m having a staring match with razor blades. It stops me asking friends for help, or even considering that this is something they could help with, or that I deserve help. Often I’m so busy being in denial that I don’t even notice there’s a problem until the urge to harm myself is so loud I can’t think clearly enough to avoid the situation I was trying to ignore. And by that point it’s almost too late, because by that point it appears in my head as a decision that’s already been made, and it is obviously the right thing to do, and that decision is tortuously difficult and psychologically painful to unmake (case in point: the slow dawning on me yesterday evening, having wanted to – intended to, even – act on the urge all day, that actually maybe it wasn’t strictly necessary, and the absolute brainfuck that caused. More NOPEs needed in service of explaining just how little I wish to go through that undeciding process again in the near future). Even on this blog – the number of posts in which I specifically talk about an aspect of eating disorder recovery (hundreds), versus the number of posts in which I try to deal with lapses into self harming (this post makes four or five, I think?). The last time I cut myself before this January was January 2014, after Charlotte died, and I told one person. I know for a fact that I was incredibly triggered for weeks on end at different points during 2011, 12 and 13, even though I didn’t act on it (much – there may have been biting and hitting at various points, but no cutting) or, again, talk about it. And before January 2014 the last two times I relapsed were during the winters of 2010 and 2009, and although I was updating this blog very frequently in those days, I wrote one or two posts about each incident. Maybe five posts, and I’ve spent hours, days, weeks, months fighting the urge to hurt myself over the last six years.

It’s somehow easier (and this is entirely personal, I’m making no generalisations and I know everyone experiences these things differently) with the eating disorder. I think it’s partly that I’ve had more practice distancing myself from eating disordered thoughts, and recognising that they lead nowhere good. I also think any return to eating disordered behaviours affects more areas of my life more quickly than self harming does. Within days of starting to restrict, I might feel some relief, but I will also feel cold, start obsessing about food, find it harder to concentrate at work, realise I’m becoming much more short tempered, my relationship with A will suffer in subtle but noticeable (to me) ways, I will be constantly exhausted and yet hyperactive, I will start to realise that I’m actually just as anxious as before I relapsed, but it’s just all been funnelled into food and numbers, so I might not be worrying about someone shooting me or dying of ebola, but I am obsessed with how quickly I could reach Xlbs, or with calculating and re-calculating calories eaten today. My motivation for staying in recovery is easier for me to rediscover and hold on to when I experience all of this and remember just how much worse it all gets the longer it goes on. Motivation to avoid self harming is so much more tenuous for me, and is easily lost when the inside of my skull feels and sounds like a crowded shopping centre on Saturday morning. That same noise, that claustrophobia.¬†And it is not helped – not at all – by the fact that of all the different things I have experienced, this is the hardest one for me to talk about. The hardest, and because of how helpful I find the process of working things out loud or in writing, possibly the one thing I would benefit most from talking about.

Now I’ve started writing this I almost don’t want to stop, but I also don’t really know what else I want to say. How do you talk about something that is so hard to pin down? It’s like one of those magic eye images – you look through them, slowly move them away from your face, you avoid looking directly at whatever starts to emerge, and if you can do all of that, you might be successful. I was always completely and utterly shite at those things. Couldn’t do it if the coordinates to the only antidote of a poison my nemesis had slipped me were hidden in one, although that’s an interesting idea for a future James Bond film.

So lets all be glad that I have a competent therapist at the moment instead.

When everything goes right and everything feels wrong

This post is coming to you from my bed, where I am currently hiding from the workmen who have colonised my bathroom, living room, and spare room. They are sorting out the damp problem in various ways, which will be lovely when it’s done. In the meantime I am trying to stem the rising tide of hysteria induced by the sheer state my home is in by…well, mostly by just not looking at anything other than my laptop.

So much happened last year, and I only updated this blog twice. In September, I turned 30, which felt particularly meaningful because it was the end of the five years I gave myself to decide if recovery was worth the effort. A huge amount changed in those five years. My life didn’t stop while I was spending time trying to catch up with all the social and emotional development I missed out on in my teens and early twenties. My late twenties were no less eventful, and I feel like I’m going to be playing catch up for a while yet.

The other big occasion was in October, when Audrey and I got married! I was surprisingly calm about the whole thing until about two weeks before. This was partly because we insisted on doing so much of it ourselves, including but not limited to the table decorations, the bouquets for us and our bridesmaids, the music to be played during the ceremony and dinner (give a woman with OCD a playlist to organise, and she will be there for days), the wedding favours, and so on. I’ve been meaning to post photos for months, but haven’t quite got around to it.

The not-getting-around-to-it has been largely sponsored by my mood. I have only just started trying to tell people what’s been going on, purely because it didn’t occur to me until it recently started getting really obvious and a bit scary that I was depressed rather than a lazy fuck (ah, depressed brain, you are so friendly and charming). In more¬†subtle theories, for a while I failed to take it seriously because I thought I was just burned out from my dissertation, and would bounce back eventually. Bouncing back has totally failed to occur in the last fifteen months or so. Following the stress of having my hours at my last job suddenly cut in September 2013, my mood never recovered after Charlotte died a year ago, and every time something else stressful happened – writing my dissertation, reintroducing wheat into my diet for a few weeks so I could be properly tested for coeliac, getting married (fabulous things can be stressful too) – it dropped lower. Apart from a couple of weeks before and after the wedding, when I was sufficiently distracted by A Project, the vast majority of 2014 (and 2015, so far) was spent sitting on my sofa, staring into space, trying to find the energy or motivation to move and DO SOMETHING. ANYTHING BUT SIT HERE FOR ANOTHER DAY. But although I’ve managed to carry on working, at home all I can seem to get myself to do most of the time is sit. A couple of weeks ago, on a Friday when I had no (paid) work to do, I had to get on top of the cleaning. I cried while I was trying to hang the washing up because I couldn’t decide where to put anything, and again when I couldn’t get the bloody duvet into the fucking duvet cover (expletives were totally necessary at the time), and again when I got in the shower and considered that crying over the soul destroying properties of damp socks was not what I had intended for my life at 30 years old.

I’m certainly far more tired, both in the sleepy and the fatigued senses, than is strictly necessary for someone my age, but most of the time the difficulty feels less about lack of energy and more to do with my brain just not working properly. Some days over the last few weeks when I’ve come home from work, it has taken me twenty minutes plus of very slowly doing one little thing at a time before I could move from the bedroom to the living room or kitchen. Okay, I’m home. What first? Turn off alarm. Take off my shoes, replace with slippers. Next, put shoes away. Now take off and put away coat. Now put on dressing gown, because it’s bloody freezing. Now put lip balm (one of my current tics is chewing my lips. Really not a good one to have in January) and phone in dressing gown pockets. Now open backpack. Are there any empty food or drink containers to be washed up? Take to kitchen. Are there any receipts? Put in recycling – no, wait, Audrey might need them, sort through them first. Oh god, I don’t know what to do with the receipts. Um. Sit on the bed and stare blankly for five minutes. Try again.

And so on. Trying to make a simple decision currently feels akin to attempting my physics homework when I was going down the drain at York. My brain just doesn’t want to know. A couple of friends have noticed that I’m much more quiet on Facebook – I often type and delete comments and statuses several times a day, but very rarely hit anything but the ‘like’ button, because social interaction seems so complicated. I am terrified of getting into a debate or discussion, because I don’t have the resilience to cope with them at the moment, and I’m scared of my potential reaction to being trolled. I’ve quietly left virtually all the groups I used to belong to. This post is only getting written because the need to distract myself from the horror of PEOPLE IN MY FLAT MAKING A MESS is great enough to focus the mind a bit.

I finally spoke to my GP about my mood and rampaging anxiety at the start of December, and I have an appointment with someone from the local CMHT in a couple of weeks. I don’t really know what they can do – I think we’ve pretty much proven that medication is a bad idea, and waiting lists for specialist therapy services are a bitch (I went through the primary care psychological therapy services a couple of years ago, it didn’t really get me anywhere). But I didn’t know what else to do, and you never know what a new (to me) team will come up with.

It is disappointing that things have gotten so bad, especially when last year my weight and eating was better than it ever had been. I know you can’t fix everything with weight gain, especially when my co-morbid issues so pre-dated my eating disorder, but it is still frustrating. When I am anxious or depressed and actively eating disordered there is a concrete reason for the distress, and a thing that can be fixed in a practical manner. As eating less became the answer to every problem when I was ill, eating more became the answer when I was in recovery. But having been physically healthy for years, doing everything ‘right’ behaviourally, and still becoming seriously depressed, is profoundly terrifying to me. There’s nothing to pin it on, nothing to blame. Or rather, there is this chaotic mess of stress and unresolved grief and regret and a cold, damp flat, and a job that isolates me and never makes enough money for us to live on, and a sense that everything I try fails, and that life will carry on slamming doors in my face, and that nothing will ever be okay, and I don’t even know where to start with that.

I will try to update a bit more often, and to at least put some photos of the wedding up. I say that every time though, and still the gaps between posts increase, and the longer I am away, the less this blog feels like a safe haven where I can be honest and find support. This mirrors one of the worst aspects of depression for me: that the more I need people to understand and help me, the less I feel able to find the words to ask.

Giantfossilizedarmadillo, BA (Hons)

I have long passed the stage of worrying about not updating this blog. It’s still here for me to mark big events and special occasions, both positive and negative. I wish I had more time/inclination to blog, but this year has been so busy and full. I haven’t worked at the evil call centre since March, but my little counselling business isn’t doing too badly at all. I had one client when I started in October, and now have eleven ongoing, alongside another ten who have left for various reasons – the resolution of the problem they came to see me for, the end of the university year (I see a lot of students!), or with some clients referred by occupational health departments, the end of the number of sessions their employer was willing to pay for. Although I see some weekly, many fortnightly, and so this only amounts to 5-9 hours of actual face-to-face work per week, I spend much more time travelling and doing paperwork. Some weeks I love being a counsellor, and other times – when I’m tired or stuck in a hot room during a heatwave or feel like the world’s shittiest counsellor for not having all the answers – I feel like a terrible imposter, a real-life lunatic running the asylum. But overall, it’s going pretty well. This week in particular, I feel like I have been on a roll. I am putting this down to the Very Good News I had last week, which really boosted my confidence.

Because, of course, the other reason I’ve been absent from the blogosphere is because I’ve been studying on the third year of my undergraduate degree. Last year I finished my foundation degree in counselling, qualifying me to practice as a member of the British Association of Counselling and Psychotherapy. It’s a very common route to take into the profession in the UK – two years of either a foundation degree or higher diploma. However, as anyone who has known me for more than five minutes will know, I have always wanted to finish a full Bachelor of Arts/Sciences honours degree. I started my first – psychology at Cardiff – ten years ago this September. After dropping out of my education a grand total of six times due to various combinations of depression, anxiety, agoraphobia, PTSD and anorexia, I didn’t think I would ever finish anything in higher education. But I somehow got through my counselling qualifications – maybe because they build on each other, so by the time I started my foundation degree, I’d already finished a six month level 2 introduction to counselling and a nine month level 3 certificate in counselling skills, roughly equivalent to GCSE and A level standard. That gave me the confidence to take on the foundation degree, although I didn’t believe I would finish that either at various points – for example, as documented on this blog, everything went wrong in the first term, with my relationship, my job and my mental health all going to hell. Even when handing in my final assignment last summer I was convinced I would get hit by a car, lightning, a meteorite, a piano – anything to stop me actually completing the damn thing! But no, I did it, and I graduated from college last year.

The good thing about living in this area of the country is that several universities offer a ‘top-up’ course for counsellors who have completed their foundation degrees. If the foundation degree is equivalent to the first two years of university, the top-up is the third year. And that’s what I’ve been doing this year: ‘upgrading’ my foundation degree to a full BA. I was terrified of being back at an actual university rather than a small local college, and with my first assignment it seemed like all my nightmares were coming true – I was distracted by setting up my business while I wrote it, and it came back with a really poor mark. Cue all those thoughts about failure, not being any good at academia outside of a college where the standards were much lower, not being that clever anyway, it was all an illusion, what was I doing thinking I could do well at university anyway, blah blah whatever. After a good fortnight of alternately panicking and wallowing, I decided to really go for it with my next assignment, and after Christmas it came back marked at 72, a first. Comparable efforts with the other two shorter essays, plus the research project and my dissertation led to similar marks for all of them as well.

Writing my dissertation was an…interesting…experience. I did a literature review on counselling for survivors of female-perpetrated sexual abuse, which was inspired by my own experiences of disclosing to therapists that I’d been raped by a woman, and receiving shocked/disbelieving/horrified reactions in response. I focused on child sexual abuse to make it slightly different from what had happened to me, and to narrow it down a bit. The research and synthesis were absolutely fascinating, but I was suffering from burn out a bit by the end. My dissertation was the last piece of work to be marked and was due to be released with the course results, and as that was worth around 40% of the mark for the whole degree, I couldn’t predict what my final result would be.

I know UK degree results differ from many other countries, so a rough guide to our marks would be: an average mark of 70% and above is classified as first class honours, 60-69% is higher second class honours, or a 2:1, 50-59% is lower second class honours or a 2:2 (or a Desmond, in the lingo…Tutu? Heh), 40-49% is third class honours, and with most universities if you pass more than half but less than all of the final year modules, you can leave with a Bachelor of Arts/Science without the honours. My average mark before getting my dissertation back was 74, but as I said, it was all dependent on the dissertation. Even getting a fairly decent 2:1 on my dissertation would have lowered my whole degree classification to a 2:1 overall. And 2:1 is totally, perfectly respectable, you can get onto pretty much any postgraduate course you want to with a 2:1 – but after trying and failing to finish a degree for ten years, I really had my heart set on getting a first.

The course results were due out sometime during the morning of the 20th, so my other counselling friends and I were refreshing the appropriate section on the university website from 8am onwards. At 9am one of my friends phoned the department to ask when we could expect them to be up (impatient!), and obviously spoke to the office numpty, who told her they weren’t due to be released until the following Thursday. While my Facebook feed exploded in outrage, tears, and one girl threatening to vomit on her computer, I despondently refreshed the website again – and there they were…


Now, I know that at three months’ shy of my thirtieth birthday, if I’d not been ill I could have worked through a BA, a Masters and maybe a PhD by now, and be well into my career. But fuck me if I’m not over the moon at being the very grateful recipient of my Bachelor of Arts with First Class Honours. I am still sleeping with the print out of my transcript under my pillow, just in case I worry that I read it incorrectly and have to check!

I always have a harder time over the summer, with nothing academic to distract my brain, and this summer is no different. But at least this year I have my little business, and my application for this really interesting Masters I found a couple of months ago to complete. Psychological therapies for complex mental health issues, including psychosis, personality disorders, and severe and enduring eating disorders. Now that would occupy my brain very nicely for the three years it’d take to study part time…

With my BA finally over, I am just about go on holiday to visit my family for a couple of weeks with Audrey. I am also still wedding planning in fits and starts – three and a half months to go! So there will be at least one more blog update this year, probably involving pretty dresses and drunken relatives. Whoo!

Although I didn’t update my blog then, it didn’t escape my notice that this February marked five years since I wrote my first post, and this March was the five year anniversary of the start of my recovery. I gave myself five years to make it worth something, with the proviso that I could give up if I didn’t get anywhere in that time. From twenty four with nothing in my life but anorexia to nearly thirty, engaged, running a counselling practice and about to graduate from my undergraduate degree AT LAST – I think I can safely say that it’s working out okay at the momentūüėõ

The best person I never met

On January 13th 2011 I accepted a friend request on Facebook from Charlotte Bevan.

I had started speaking to Charlotte off and on during 2010, but had been aware of her presence online for longer. A vocal and enthusiastic member of FEAST and the¬†Around the Dinner Table¬†forum for parents and carers of children with eating disorders, Charlotte became involved in the online world of eating disorders while helping her daughter recover from anorexia nervosa. I lurked on ATDT often during 2009/10, trying to use their knowledge and experience to fuel my own recovery. By the time I started noticing how awesome Charlotte was her daughter was doing a lot better, and she had redirected a lot of her energy and caring onto other parents and carers who were struggling. Her posts were always supportive, informative and direct. She never hesitated to tell people what they needed to hear, although that was sometimes difficult to hear, sometimes ENTIRELY WRITTEN IN CAPITAL LETTERS EVEN THOUGH SHE WAS TRYING TO HELP PEOPLE CALM DOWN (receiving a message from Charlotte just saying BREATHE started inducing a Pavlovian-style relaxation response in me after a while), and always bravely and confidently stated. She didn’t seem to mind making waves as long as what she was saying was helpful and accurate.

I admired her and some of the other ATDT members from afar for a while, and once I was much better I started trying to get their attention, because they had helped me without knowing it, and I wanted to give something back. The perfect opportunity came when I noticed that something Charlotte had written on a Guardian article on eating disorders had been highlighted as Comment of the Day on their website. I plucked up the courage to introduce myself via Facebook message (along the lines of “hi, you don’t know me but I promise I’m not a creepy internet stalker even though I know a scary amount of stuff about you from ATDT) and to point out the accolade to her. After a few more months of feeling rather like I was auditioning by backing her up in other comment wars on eating disorder articles, Charlotte put me forward to the other members of the UK branch of FEAST, to be included in their email backchatter and general plotting for world domination.

It sometimes seemed that if she’d gone into politics, Charlotte might actually have stood a chance of achieving world domination. She was always doing a hundred different things at once. She supported parents and carers and the occasional person in recovery, more of us from the latter category seeming to be drawn to her the longer she was involved in the eating disorder community. She communicated and debated with world leading clinicians and researchers, always from a position of curiosity and a fierce desire to learn and to advocate for the perspective of parents, never appearing to be intimidated by anyone’s status, although I know she sometimes felt otherwise. She fought battles with primary care trusts and treatment providers who were not acting in the best interests of the families she was trying to help, spending hours pouring over medical records and the vagaries of the legal system. No problem was too big to scare her off or too small for her to dismiss as of no consequence. She had this incredible ability to make the person in front of her – or at the other end of the email in front of her, anyway – feel like the most and only important person in the world.

Charlotte was going to come to my wedding. She was one of only two people allowed to wear a hat to the occasion, the other being my friend Barbara. She was elevated to this status despite my bias against hats at weddings because while trying to rescue possibly hundreds of other people, she always had time for me. Back in 2011 when I had been in Newcastle for less than a year, was struggling to look after myself and my last relationship was falling apart, she sent me a one line email along the lines of “are you ok, I’m worried”, which after some conversation turned into an offer to hang out with me on Skype for meals and snacks until I got my shit together again. I managed to get myself back on track before that became necessary, but knowing that the offer, and Charlotte, were there, was invaluable. I am not good at asking for help – I am really terrible at asking for help, actually, because my pride gets in the way. Somehow Charlotte felt like a safe and comfortable person to talk to despite my natural defensiveness.

Later that year she came to my rescue again. She encouraged me to go to the FEAST conference in Alexandria, and initially even offered to share a hotel room with me to help with the cost. When it became apparent that everyone, including Charlotte’s own mother who obviously took precedence, wanted her in their room, she put me in touch with several other women looking for a room mate. That was the first time I nearly met Charlotte. Her breast cancer was diagnosed a few months before the conference, and when she should have been in Alexandria with us she was in the middle of her treatment instead. Once over the Atlantic I got myself into a bit of a jetlag-induced state because the hotel restaurant didn’t quite seem to grasp the whole dairy free thing, and I was so paranoid about making a fuss about the food in case someone thought it was an anorexic thing rather than an allergy thing. In a moment I am still not massively proud of, for some reason even though she was 3000 miles away, it was Charlotte I sent a panicked message to on Facebook. Charlotte somehow managed to calm me down, get another lady whose daughter had a dairy allergy to sort the hotel out, and reassure me that it was in fact perfectly fine to freak out on a woman who was receiving treatment for cancer on the other side of the world rather than speaking to one of the dozens of people I vaguely knew who were in the hotel with me, because she was Charlotte and that’s the sort of person she was.

I nearly met Charlotte again at the conference in Nottingham in November 2012. Charlotte somehow managed to wrangle a scholarship for me because she knew how completely broke I was after a year of unemployment. She made it possible for me to attend, but didn’t make it to the conference herself because by that point she was caring for her mother who was dying of, again, cancer. I really fucking hate cancer. She was with us on Skype as much as possible but there was an obvious Charlotte-shaped hole in the whole event.

While cancer seemed determined to foil some of Charlotte’s plans to be physically present at events, until she was very ill it barely put a dent in her online activities. In my folder for FEAST correspondence I currently have 2149 emails saved, and I’ve only ever been on the outskirts of the operation. Charlotte took part in all of the conversations those emails make up. Email and Facebook discussions include the state of treatment for eating disorders in Britain, the philosophical implications of monism vs dualism, concerns about specific people and how we could best support them, lots of humour, a fair amount of innuendo and an impressively weird chain of comments on size acceptance for carrots. I loved seeing her name appear in my inbox, because it was always attached to something I wanted to read and engage with. Charlotte’s emails often provoked long replies which very effectively distracted me from crappy moods, unwanted household chores, assignment deadlines and all sorts of other things which I have absolutely no regrets about neglecting in favour of our discussions.

In 2013 Charlotte’s cancer came back, and she had to announce that it was terminal. While all sorts of horrors had to be faced in her non-internet life, she found time last year to write a book, battle at least two primary care trusts who had been providing inadequate care for people she knew, and become the foundation for the UK arm of the international ANGI project, which is collecting DNA samples from people with a history of anorexia. The challenge is to get 25,000 samples from all over the world, and¬†Charlotte’s Helix aims to contribute between 1000-4000 samples from the UK. Without Charlotte, the UK would not be participating. I’ve signed up to send them a blood sample, and I would ask anyone else out there with a history of anorexia consider doing the same.

I backed off a little in the last six months. She seemed overwhelmed by the sheer amount of love and support directed at her by all of those hundreds of people whose lives she had changed – it was amazing to watch – and I didn’t want to upset her. I felt guilty for grieving while she was still alive, and I didn’t want to burden her with my sadness, it wasn’t my place.¬†She was involved in so many big and important things that she wanted to get going before she couldn’t work on them any more, and I didn’t want to get in the way. I missed her hugely a long time before she was gone. I half regret this, because I wanted so badly to make a fuss of her and tell her how much I adored her, and to speak to her whenever possible before it was too late, but I am also half glad I fought against that urge, because she hated to be fussed over. Charlotte tried to mother pretty much everyone I know – she called herself my internet mum – but there were far fewer people she would allow to take care of her.

On January 13th 2014 Charlotte died and¬†I’ve been trying to write this for four days and it’s still not right. She would, as my friend Fiona said, be furious at being spoken about like some kind of saint. But it’s hard not to get a little hyperbolic. I feel guilty for being so devastated because Charlotte was never mine to lose, but I thought the world of her, she was one of my very favourite people and I am quite heartbroken. If this is the impact she made on those who knew her online, I can’t imagine how her closer friends and family must feel.

Charlotte Bevan, activist and advocate extraordinaire, author, carer to all those slightly lost souls you cried with and comforted and supported, mother to your own beautiful children, international research star and dog person, I raise my cup of tea to you and feel glad that wherever you are, you are out of pain now.