*inserts usual note about self harm, eating disorder, etc*

A couple of weeks ago I read this post by Louise, attempting to explain the difference between depression and heartbreak. I would tend to agree with the rough distinction. Heartbreak is grief, and it has a focus. Depression – the way I experience it – is a kind of crushing, agonising numbness.

I got scared last week that the depression was coming back. I have been not quite okay, but certainly much better, since my surgery for endometriosis in August. Whether it was the relief from chronic exhaustion and inflammation, or the validation of having a concrete diagnosis for the symptoms that have been passed off as all in my head for as long as I can remember, I don’t know, but once I had recovered from the surgery I felt lighter, I had more energy, and I felt tentatively hopeful. Last Tuesday night I started feeling almost like the depression had suddenly returned with no warning, like a vortex had opened up in my stomach. And the next morning I woke up from the dream I wrote about in my last post in incredible emotional pain. Since then I’ve been relentlessly, as in literally every moment I’m conscious, bombarded with distressing memories, nausea, intense urges to hurt myself, and this sense of utter terror. I’ve been walking around like a zombie, unable to focus on anything beyond the sheer wall of noise in my head.

But I’m not depressed. I feel heartbroken.

I told my therapist as much earlier. I’ve been clinging to the fact of that session all week, hoping I could somehow make sense of what’s going on. Frustratingly I spent the first fifteen minutes unable to form a sentence, like back when my PTSD was really bad and I could not verbally communicate to anyone what had happened to me because as soon as I reached for a likely word, I would float away, off into the carpet or the wall or the ceiling. It worked a little better when I closed my eyes and hid my face behind my hands, like if I couldn’t see her, maybe I was speaking to an empty room. I started with the most insistent memories. Of Christmas when I was 17, when I was desperately unwell, having spent half the autumn in and out of hospital, starving, bingeing, abusing laxatives and being stitched at accident and emergency. My relationship with my parents was at an all-time low, with frequent stand offs between mum – screaming – and me – dissociating (get that stupid zombie look off your face and say something!). On Christmas day I sat huddled into the sofa, looking at the presents and trying to remember how I was supposed to act, what I was supposed to feel and say. It all seemed like such a fucking lie, because my parents had made their feelings about me clear and why were they trying to pretend everything was okay? I wasn’t okay. I planned to wait until after my youngest brother’s birthday in January and then kill myself. I just had to last three more weeks, but I felt like I was already dead.

I grew up in a three-bedroomed house with six other people, at least one dog, between three and seven cats depending on the year, rabbits, guinea pigs, fish. I shared a room with one and then both of my younger sisters. I was always alone. Not literally, because that wasn’t possible, but there was a disconnect between me and the rest of the world. I remember numerous times when I was scared or upset about something – the stuff all kids get upset about, falling out with friends or a ghost story that shook me up – and my first reaction was to dissociate, then to shake, then to feel sick. Finally, with a physical problem to report, I would sometimes tell mum, usually getting an eye roll and a mention of hypochondria. Several times a week when I was four or five I would lie awake feeling indefinably *wrong*, that I can now pinpoint as anxiety and dissociation. If I got scared enough I would go downstairs, where I’d sit on the third stair from the bottom trying to find enough courage to go into the living room. Counting. When I get to one hundred, I’ll go in. If I got as far as three hundred I’d usually give up and go back upstairs, but the times when I did go in all went the same way. What’s wrong Katie? I don’t feel well. What is it, do you feel sick? Sore throat? Headache? No/no/no. Go to bed, you’re fine.

I didn’t have the words. I was never given the words to define and describe my emotions. All I had was ‘sick’ and ‘wrong’. At 31 years old I woke up on a random December morning in some kind of horrendous pain and still didn’t know what it was. Is there something physical wrong? Am I having a breakdown? Is this a panic attack? Depression? What the fuck?

I told my therapist, I have always struggled to remember anything much from childhood, but all of a sudden I remember so much, all linked to sadness and loneliness and the desperation of knowing I had to cope with this unnameable horror by myself. I told her, I watched the film Inside Out recently, and I related so much to the process the little girl goes through – how she’s thrown into a situation without the emotional maturity she’d need to cope with it, and with her parents distracted, she slowly loses herself and starts to go numb. But at the end when she runs off the bus, back to her parents, she talks to them and they all cry together – I didn’t cry because it’s a lovely ending, I cried because that’s where my story diverges drastically. At eleven years old I didn’t have accidentally distracted but emotionally literate parents, I had parents as fucked up as I was becoming, who couldn’t help me. I stayed numb, and with more and more distress I couldn’t name, couldn’t talk about, and couldn’t cope with, I wanted to die. I soon learned to calm myself with starvation and razor blades, a system of emotion regulation created by a terrified child that I still can’t seem to override a full twenty years later.

My whole life stretches out behind me, coloured with so much pain I can’t take it in. And I know cutting myself won’t help, I know that this is grief, and what I need is to talk about it and comfort myself. But there’s this much younger part of me who is frantic, suicidal, desperate to hurt herself, devastated at being all alone in the world, and convinced that it’s all her fault. That she drives people away (I do) because she’s so difficult, and conversely, that she is pathetic and attention seeking and really should be able to cope with this, so who the hell does she think she is, making such a fuss? That part of me is so panicked I can’t calm her down, nothing is getting through. She feels unreachable, and I’m so scared.

It’s like that argument with my dad started an avalanche, and I’m being buried, and every memory is another freezing wall of slush threatening to suffocate me. After twenty years of being lost in this vast, white, emptiness I couldn’t make sense of, I’m suddenly overwhelmed by grief.

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[TW mention of self harm/eating disorder]

I’ve been largely absent from the internet (apart from twitter) for the last couple of months, because I’ve had a lot going on. In particular, I just finished the first term of an MSc yesterday, so much of my free time has been taken up by reading papers and writing assignments. But this is always the way – I blog much less frequently when I’m studying, partly because having routine, structure, and goals to occupy myself distracts me from all the crap in my head, and partly because I’ve never been any good at focusing on more than one thing at a time. When I’m studying, I study, and when I’m not studying, I’m lost, and so more likely to stumble back to corners of the internet where I might find parts of myself lurking.

I have other things I should be concentrating on this morning, too. I have four different modules with exams/assignments due in the first couple of weeks of January, and right now I’m supposed to be reading about theoretical accounts of memory. But I’ve decided I need to briefly prioritise something else.

The problem with monitoring your own mental health is that you’re basically using your brain to monitor how your brain is doing. I don’t mean that in an entirely biological sense, or in reference to psychosis, although I know from experience how bloody difficult it is to work out whether your perception of reality actually matches reality. During the times I was unsure what was real and what was not I always erred on the side of terror – anything that seemed possible, however unlikely others thought it, should be kept in mind so I couldn’t be taken by surprise again. Ten years ago I would lie in bed watching a stuffed toy my first boyfriend bought me, seeing its expression became malevolent, anticipating it flying across the room to suffocate me. Some distant part of me, screamed into submission, still whispered that the real danger in this situation was not the toy, but that I had become so detached from reality that this seemed not only likely, but probable – but in the moment I couldn’t stop watching, just in case. There are many other examples I could use, from my conviction aged 13 that my teachers had put electronic bugs on me and were listening in the staff room, laughing at everything I said, to the insect-variety of bugs I see when I’m very tired or stressed out these days – but fortunately, the latter are decidedly less convincing. The point is, I never told anyone what I was dealing with at the time, because I didn’t realise there was anything to tell.

There are experiences of other types that follow similar patterns in terms of my ability to recognise, in the moment, what is happening. My eating disorder is another. Unintentional undereating due to illness or stress or lack of appetite or general busyness, followed by selective inattention (not quite accidentally-on-purpose, more like malicious naivety, or stubbornly prideful avoidance of the truth that I really am still so vulnerable) to warning signs that all-is-not-quite-right, concluding with genuinely deliberate restriction, and in just a few days I have a relapse to deal with that will take weeks, if not months, to undo. I rarely notice before I get to steps 2 or 3, and by that point I can’t work out what to do about it, because by then it’s too late, it’s impossible to separate my will from the anorexia. The desire to keep going burns harder than hunger, and I can’t see through the heat haze. It usually takes somebody else throwing a bucket of water over me before I realise how close I was to self-immolation.

Last winter was similar. All throughout 2014 I didn’t notice, ignored, or tried to reason away red flags that all was not right, and it wasn’t until maybe the third or fourth time I’d cut myself after years of not doing so that it occurred to me I should probably ask for help. It seems obvious in hindsight.

This morning I’m wondering again how close to the edge I am, and how I can do this over and over again without noticing until the last minute. I had a fight with my dad over the weekend – a long story, but based on him treating my little sister like shit in the same way he treated me a lot as a teenager. While standing up for my sister, any attempt to tell him that that his behaviour wasn’t appropriate was met with insistence that I am too sensitive, my perception is warped, I’m remembering things incorrectly. It set off trains of thought in all sorts of directions, including but not limited to: beating myself up for convincing myself that dad was the safe parent, when actually he’s just as damaging as mum; wondering why I bother staying in touch with them at all when we have no emotional contact at all, it’s all so superficial, or otherwise dangerous; hating myself for being so sensitive and unable to be their version of acceptable; being angry with them for not being the parents I needed; being angry that I am angry with them when they are both completely fucked up and don’t understand that their behaviour is wrong; feeling lost and alone and rootless; hating how affected I am every single day by all of this and blaming myself for not just getting a fucking grip; internal accusations of melodrama and appropriation of experiences of people who had *really* been abused; and so on.

Red flags: all that confusion. The sense that I want to shrink into the back of the sofa. Being unable to express any of it due to circumstance – being at university yesterday and today, having deadlines I had to focus on. Feeling heavy and leaden. That nasty combination of mental pain, numbness, and agitation. Vivid dreams of being tortured and cutting myself to cope.

It wasn’t until I woke up from the last violent dream this morning that I realised I should probably pay attention, because when I dream about self harming it’s usually because I am not coping with trauma-related triggers, and am very vulnerable to actually acting on self destructive feelings. The same dreams happened when I was visiting my parents over the summer, but because I was in their house dealing with their shit every day it was easier to recognise how distressed I was and why. I struggle far more when I am triggered to all hell and then have to swallow my reaction for whatever reason (deadlines to work on, for example). Then the reaction is far more likely to pop up again a few days later in the form of nightmares, intense urges to harm myself, terror that I am getting depressed again (and I just can’t work out why…).

It’s like I woke up from a nightmare to find that I had sleepwalked to the edge of a cliff, where I am now debating with myself whether I am imagining and making an unnecessary fuss about just how high it is, or whether I should call for help.

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Conditional love

[TW for mention of self harm]

When I was a teenager, I was convinced that if I could just cry about everything that had happened to me, if I could properly grieve, I would feel a lot better and less self destructive. I found it really hard – virtually impossible – to cry, but did have regular panic attacks, which I suspected were all those scary pent up emotions forcing their way out in whatever way they could, seeing as the exit via the eyes was locked up so tightly. Part of the not-crying was down to feeling unsafe at home. The walls were thin, there was no privacy, and being caught crying was dangerous. It would lead to aggressive questioning by mum: what’s wrong with you? Why won’t you talk to me? If you’re trying to hurt me by shutting me out, it’s working! There’s nothing seriously wrong with you, you’re just after attention. Nothing really bad has ever happened to you, I don’t know why you can’t just pull yourself together. We spoiled you too much when you were little and now you expect everything to be easy. Why won’t you talk to me?

It was exceptionally rare that I cried, and even more so that I was caught.

Recently, crying has become more of a common phenomenon. It’s still difficult, but I have become better at noticing the physical and psychological sensations that accompany sadness. The specific heaviness in my chest and abdomen, the feeling of pulling behind my eyes and in my throat. I feel mentally heavy too, and like I need to curl up and hide. I find myself shrinking into the sofa in a sort of vertical foetal position. When I notice these things I usually report them to my wife, and we talk until we work out what it is that I’m sad about. Finding the exact right words generally makes me cry. It’s still a rather convoluted process, but it’s also infinitely preferable to the way things were even six months ago, when emotions seemed to be instantly transformed into urges to self harm, and I wouldn’t realise I was distressed at all until I found myself having to attend accident and emergency. This is definitely progress.

Sadness is difficult and scary, but tolerable as long as I recognise it and talk about it. However, other emotions seem to be giving me a lot more trouble. A couple of months ago, walking back from therapy, it hit me just how much shame I carry around with me. I’d always considered myself to have reasonable self esteem, despite the mental health problems. If asked, I can name good things about my personality/behaviour without guilt or hesitation, and I generally think I’m a decent person. Both of these things are a world away from how I felt as a teenager, so by comparison, I must have good self esteem, right? But what hadn’t occurred to me was that any sense of self esteem I had was entirely dependent on me not behaving, thinking, or feeling certain ways.

There’s a concept in humanistic counselling known as conditions of worth, which is related to unconditional versus conditional love. Loving someone unconditionally means loving them for who they are, regardless of what they do. Obviously this could be difficult taken to extremes, but in every day circumstances it looks like the parent who explains to their child why a behaviour was dangerous/hurtful without shaming the child (avoiding labels like “you’re so bad/stupid”), cuddling them and validating their distress when they are upset rather than telling them to pull themselves together, or supporting them if they’re struggling with school instead of getting cross and insisting they’re just not trying hard enough to make friends/pass tests. All those alternatives – labelling children, shaming them for expressing certain emotions, blaming them when they find situations difficult – and more, over time, send the message to a child that they are only lovable if they meet certain conditions.

This is very much how I was made to feel. Outwardly, my mum used to tell me it didn’t matter if I didn’t always get As at school, what sort of job I ended up with, how I chose to live my life as long as I was happy. Covertly, I received all sorts of messages about what was acceptable to her and what wasn’t. It wasn’t acceptable to be gay – it was unnatural and disgusting. It wasn’t acceptable to be physically unwell, because she was “a rubbish nurse”, and anyway, you could keep yourself going however bad you felt if you applied enough willpower. Similarly, it wasn’t acceptable to be sensitive, either physically (to temperature, certain materials, foods, crowds, noise) or emotionally (to criticism, bullying, etc). It wasn’t acceptable to be upset without a reason she deemed good enough. It wasn’t acceptable to take your problems outside of the family. It wasn’t acceptable to tell her if she said or did something hurtful. Emotions, in general, were not acceptable – you had to function however bad you felt inside. Vulnerability was not acceptable, because it was weakness, and weakness was dangerous, it allowed people to hurt you (your fault, not theirs). Having a different opinion to her on ethical, social, or religious issues was unacceptable, although my dad was much worse for that when it came to politics. I was lovable when I was being clever – this got me the most attention as a child – well behaved, and not making a fuss about anything. I was unlovable when I was anxious, upset, angry, overwhelmed, or showed any physical or emotional need she didn’t understand or deem ‘valid’.

I’ve carried that into adulthood, and every time I feel something that pushes those buttons, I feel immense shame. My rational side thinks I’m a pretty good person, who deserves to be treated with respect and kindness – the scared little child inside me is furious that I am pathetic and weak enough to ever require support, encouragement, information, rest, or love. This makes me hugely defensive if someone tries to explain something I think I should know (even if I don’t know it), turns me into a complete doormat if my opinion conflicts with someone else (so I agree to medical treatment I don’t want, or walk out of the hairdressers in tears because I hate what they’ve done, but couldn’t tell them), and makes me feel incredibly self destructive if I need something from someone that they can’t give, or if I’m angry with someone.

Anger is another emotion I struggle with. It is unacceptable to me, so it seeps into bitterness, self harm, and passive aggression. I feel huge amounts of shame about those responses too, especially any sort of passive aggressive response, because I associate that with mum. It’s probably no coincidence that the most outwardly stable I’ve ever appeared was when I was involved in campaigning and advocacy with an eating disorder organisation. This served the dual purpose of giving me an outlet for the anger I felt over past mistreatment (particularly poor quality NHS mental health treatment, but also the misunderstanding I got from mum over my eating disorder), while still being acceptable to my conditions of worth. I wasn’t blaming mum, I was blaming poor understanding of eating disorders. I wasn’t asking for support, I was campaigning for others to receive better support. I didn’t have to appear vulnerable, because the sense of community I found in the others involved with the organisation helped maintain my recovery. The position they took on eating disorders (“biologically-based brain disorders”) was non-threatening, because it didn’t require me to consider the abuse, but still took all blame off of me. This all came at a price, and gradually I became more and more uncomfortable with the focus on biology, more aware of how precipitous my recovery was, and of how I had been affected by my parents’ behaviour as I grew up. But for a while, it seemed to stabilise me, superficially.

I don’t know what to do with anger that threatens my sense of what makes me a lovable and worthwhile person. I don’t know what to do with all that shame, except to keep dragging it out of the shadows to show people, to watch their reactions carefully, to test whether I really am all that bad or whether maybe I can start expanding the definition of acceptable a bit. But it took me a long time to become aware of how sadness felt, and to get used to talking about it rather than suppressing it. Maybe noticing and thinking will eventually lead to feeling and processing these other, far more unacceptable emotions, as well.

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I haven’t posted in a while. I can think of a couple of reasons why. I was extra busy for a few weeks of July and the start of August, helping my wife out after she had a minor operation. Then, I was just starting to write an update here last week when I got a phone call from the local hospital asking me to come in much earlier than expected for another procedure, so we’ve had a right summer of it.

My operation was a laparoscopy for the purpose of diagnosing endometriosis. The surgeon didn’t seem confident that he would find anything (I always wonder how much doctors are influenced by my mental health history when assessing the likelihood that I am genuinely unwell), but he did, and he lasered the obvious bits out. I’m now over the worst of the pain, and waiting to see what my rather battered reproductive system throws at me next month. For the last few years I’ve spent at least half of every month dreading the start of my period, since it usually involves much more pain than most people seem to report, and sometimes – unpredictably – leaves me screaming in agony. I’ve collapsed in the toilets at college, in coffee shops, on holiday while staying with friends, in supermarkets, all sorts. I’ve looked for patterns, but all I’ve been able to work out is that if my IBS is really bad, the pain might be worse than usual (although given what the surgeon found it seems that cause and effect might be the other way around there – if the endo is being more inflammatory than usual, it will negatively affect my IBS), and if I drink any alcohol in the week before my period I *will* be in the worst sort of pain. I’m glad to have an answer, especially one that means I really was in more pain than most, not just being a delicate little flower. On the other hand, the results also have consequences for the way my wife and I plan to have children, for my future health, and I have to think through some treatment options as well, because it will come back.

I think I’ve also been quiet because I was so upset about the CMHT assessment I wrote about last time. I did write about it a bit last time, but my wife pointed out that I had been quite vague about what it was that had upset me. The way the psychiatrist treated me made me feel really ashamed. On the face of it what he actually said wasn’t surprising. He suggested I met partial criteria for various personality disorders (particularly borderline and avoidant), which is a fairly logical thing for a psychiatrist to say when faced with a self harming adult with a history of abuse, a morbid fear of social situations and depression that mainly presents as an overwhelming feeling of numbness. That in itself might have been hard for me to hear, because I’ve been taught throughout my whole time in contact with the mental health services that I must do everything I can to avoid being labelled with a PD, but I could have seen his point if what he said seemed a fair assessment of me and my current problems. However, he was determined to convince me, specifically, that I am emotionally unstable, based on the self harm, and I disagree with that. I’m not at all an impulsive person – if anything I could do with being more impulsive, I’m far too risk averse – and my experience of self harm is that the urge to do it builds slowly, over weeks, sometimes even months, usually tipping over into action in nasty ‘perfect storm’ situations when literally everything is going wrong and I finally crack. The problem isn’t my response to that last thing to go wrong though, because in other circumstances I can cope with isolated stressful events. The problem is the ongoing (annoyingly stable) low mood and high anxiety that steals all my resilience from me, and that’s what I wanted help with. The self harm was far more habitual when I was a teenager – now it’s just something that happens when things are at their absolute worst, and although I need to keep an eye on where I am in terms of urges to do it, on a daily basis it’s not really The Problem.

When I tried to explain this to the psychiatrist he shouted over me, came out with the comments I mentioned last time about being in denial/hiding behind my studies, and ended the appointment. Three weeks later I got a letter saying that the CMHT refused to offer any treatment other than this one, ten week DBT skills group, the contents of which I’ve covered five or six times before in my life in groups that utilise the exact same DBT modules. Worse than that, they had spoken to the primary care mental health services and other secondary care therapy services, getting them to agree they would not accept a referral for me from anyone else as this group was the only appropriate option. They’d even written to my GP, telling her that everyone was in agreement that this was what I should do, and that I should be encouraged to re-engage with the psychotherapy service for this group. Luckily, my GP didn’t agree (best GP ever, it’s so hard to find one that’s really good with mental health), and supported me in sending a letter of complaint. I pointed out that lack of skills wasn’t the problem, what I was looking for was help to work on the effects of the abuse, and that the other assessment I had at the psychotherapy service that I wrote about last time, in which I was terrified of the therapist, was hardly enough evidence to determine whether I had certain ‘stable, pervasive and inflexible’ personality traits. I felt hugely relieved that my GP backed me up in saying that none of this really added up for her, and that I was right to complain. I’m still waiting to hear back from the CMHT though, they’re clearly not in a hurry. I suppose there’s always PALS/ICAS but I don’t want a fight, I just wanted some support.

I’m not really sure how I feel about it all at the moment, I’ve been more focused on getting better from the laparoscopy. I’ve also been distracted by being a guinea pig for an LGBT therapy organisation, who needed people to test-study the modules of a new postgrad certificate they’re offering. That’s been really interesting, and has helped me feel a bit more confident about going back to university next month. My mood has been a bit better for the last month or so too, leading me to wonder what I’m doing contesting the CMHT’s decision, putting myself at risk of more crap from them. But then, what I wanted wasn’t just help to resolve the current period of low mood, I was also after help to properly deal with the effects of the abuse, so I could avert future crises. I’m probably on a train to nowhere with that one – mental health services are notorious for focusing overly on symptoms at the expense of causes. I also have the private therapist I’ve been seeing to help me with that. I could really do without having that additional financial pressure, but I was recently awarded some disability benefit that will cover her fees for now.

I was treated with such respect when I had my laparoscopy. I was terrified of the anaesthetic, and of being sick afterwards (I have a very long standing phobia of vomiting), but the staff were incredibly patient and did everything they could to make me comfortable, including using painkillers less associated with nausea and letting my wife stay with me throughout the whole day (their policy is to send family members away to wait for visiting times), apart from when I was actually in theatre. I was open about having mental health problems, and apart from the surgeon being slightly dismissive of my concerns around hormonal treatments, every other staff member treated me as if my anxiety was just as valid a problem as my endometriosis.

I’ve never felt that way about the mental health services. I don’t understand why they are so reluctant to treat people with dignity and empathy. It makes me want to cry to think of how ashamed and alone I’ve been made to feel by CAMHS/CMHT services at various points in the last decade and a half. It’s upsetting to realise how much mistreatment I’ve put up with, silently, convinced it was my fault and that if I would just try harder to get better the professionals would be nicer to me. It’s only with my wife’s support that I can recognise when treatment has fallen short, and decide to challenge it. I feel desperately sad for my friends who don’t have someone to back them up in situations like this.

There are lots of other things I could have posted about in the last few weeks when I’ve been either too busy or in too much pain post-op, hopefully it won’t be so long next time.

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Injustice multiplied

It’s been another difficult week. This is partly down to fall out from the holiday we just got back from. but a lot of other stuff has been going on as well. My wife also had a minor operation on Tuesday, and I’ve been busier than usual looking after her. Then I had to see a gynaecologist on Thursday, as my GP thinks I might have endometriosis, and finally I had a CMHT assessment on Friday.

The assessment was probably the most stressful part of the week. I was last assessed by the local CMHT in February, and they referred me to a psychoanalytic therapy service. I had my assessment with the therapy service in May, but decided against further treatment with them. I found the therapist there really intimidating: she wasn’t trying to be warm or engaging like any of the previous therapist I’ve seen, and it felt more like an interrogation than an assessment. She asked very blunt questions, like why I felt the people who raped me had chosen me (definite victim blaming implications there), and whether I thought it was a good idea for me to be in my current career. Their approach at the unit is to wait for you to speak, and I find that really hard – once I trust someone a bit it’s hard to shut me up, but just sitting there staring at me like a snake isn’t really going to facilitate that. And her whole manner – the coldness, the implied judgements, the air of not giving a shit about me – profoundly reminded me of being treated similarly by my mum and others in the past, which was really distressing. While I realise part of psychoanalytic therapy is about discussing the projections the client makes onto the therapist, this wasn’t just transference – that woman was just scary and triggering and not at all helpful. So I thought maybe the CMHT would have other ideas about things that could help me.

It’s been five years since I have had any ongoing support from NHS mental health services. I had mixed experiences with previous treatment in another county – my CPN there was helpful, but the main psychiatrist I saw was as cold and invalidating as they come. They could also be quite unpredictable. One example: at one appointment in early 2007 the doctor suggested I could be admitted to hospital to have my meds changed, as I had a history of reacting badly to withdrawing from and starting new medication. At the next, when I was really struggling with withdrawal and asked if hospital was still an option, I was told hospital couldn’t keep me safe and my desire to be admitted was a sign that I was becoming too dependent on the services. There were a lot of incidences like that regarding that particular doctor. I was also treated poorly by the eating disorder services. I was grabbed by a family therapist when I was having a panic attack and stood up to leave the room during a group session, and then chased down the corridor to the day room by her, shouting about how I would die if I didn’t engage with treatment. After discharge and a re-referral the following year, having individual sessions with that woman was made a condition of them helping me again. I eventually put in a formal complaint about that, and received an apology, but that was years later – at the time I was incredibly unwell and vulnerable, and their treatment put me at greater risk.

As a result, for five years I’ve kind of ‘sworn off’ NHS mental health services. However, last winter I was desperate, in another part of the country, and having left it five years I thought maybe things might have changed a bit. And the doctor I saw then was nice enough, although I was so shocked by seeing a nice doctor I forgot to ask what I was supposed to do for support while waiting for this therapy referral to come through. After that didn’t work out, and my self harm got really out of control in May, I was re-referred. I guess I was lulled into a false sense of security by how smoothly it went in February, because the (different) doctor I saw this time was totally different. He accused me of being in denial about the result of the therapy unit assessment (of course I disagree with it, I was so scared by that woman I said whatever I thought she wanted to hear until she let me leave), and of using my psychology studies to obstruct treatment. I asked about the specific symptoms I was supposed to be in denial about, and explained to him that my behaviour with that particular therapist was not representative of my behaviour with other professionals (those who are not lizard people), but he wasn’t having any of it. It’s impossible to disagree with a psychiatrist determined to turn every point you make into evidence of your defensiveness and denial. He started talking over me after ten minutes and at fifteen told me firmly that they didn’t ever offer ongoing support, it was all target driven, and that he would pass my details onto the psychology team with a view to helping me with the problems the therapist thought I had.

So that went well.

Things got a little farcical after that. I went to pick up a wheelchair we had hired for my wife while she’s recovering from this operation, and got so distracted I accidentally took it for a walk on the town moor, in full sun, through the cow poo and everything. How on earth I got that lost I don’t know. I was so hot and bothered by the time I got home I burst into tears and cried on/ranted to my wife for about an hour, before swearing off NHS mental health services for another five years. Probably.

I’ve said this on Facebook and Twitter over the last few days, but I’m really angry about how unjust all this feels. It seems pretty common to people seeking support for the effects of abuse, bullying, and other forms of trauma. So, you’re victimised and traumatised through no fault of your own (regardless of what that therapist thought). In my case this has included emotional abuse and neglect, bullying at school, and rape when I was 18. I had no safe person to talk to about any of these things, and every time I sought help I was invalidated and blamed. The teachers at my school accused me of just being too sensitive – the people bullying me were just being kids. My mum accused me of attention seeking and trying to hurt her when she found out about my eating disorder and self harm. The mental health services accused me of not taking enough responsibility for myself from day one, as a scared and traumatised sixteen year old who had never been taught what to do with difficult emotions. There’s the second injustice – first you are traumatised, secondly the resulting problems are your fault. And thirdly, if you are lucky(?) enough to receive some form of help, there is often a punitive element. In eating disorder treatment I was always being told off for not trying hard enough, even though I was trying so hard I was eating my meals in tears at the day unit. In another type of therapy I had, any form of self harm resulted in a 24 hour ban from speaking to a therapist, and they kicked me out because my weight was too low after a few months. My psychiatrist told me age 18 that I would always be the way I was, and that I’d just have to learn to live with it. The only time I ever cried in front of him (in desperation, because medication side effects had made me suicidal) he stared at me for five minutes, then said “I can’t do anything about this”.

And finally, it’s hard to even be angry about all of this because there is a cacophony of voices in my head, put there by my parents, doctors, teachers, and society in general, telling me that I’m playing the victim, I just need to get a grip, take some responsibility, and stop trying to get other people to clean up my messes. I want to apologise for my distress by listing all the things I’ve done in the name of recovery – eventually gaining to a healthy weight by myself, reading hundreds of self help books, teaching myself to live independently and to form stable relationships, graduating last year after dropping out of my education five times. I’ve always tried so, so hard to engage with the services in an ‘appropriate’ way, ask for what I need clearly, not resort to desperate gestures when they screw with me, and it makes no difference. And I feel pathetic, because I’m getting sucked into their game, in which no one deserves help or support unless they can prove they are ‘deserving’ enough.

Maybe if society didn’t look away nervously when the subject of abuse came up, slap bullies on the back and tell victims that it’s character building, and actively fucking condone rape, there wouldn’t be a mess in the first place.

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No going back

The much-considered holiday happened. It was half lovely, and half an absolute fucking disaster. The lovely part was time spent walking with A along the coast and through the heaths, meeting friends, and spotting butterflies (my number one favourite distraction from mentalism! It is pleasing on both the nerdiness and aesthetic fronts). Less lovely was the time spent around my family. The family as a unit seems to be totally unravelling, and there was an incredibly tense, claustrophobic atmosphere in the house. My siblings all seem grumpy, distracted, and anxious, as I would be too if I was still living there, trying to cope with the house being sold and the uncertainty over where I would be living in a few months. My dad was in a bad shape medically for a couple of different reasons, one fixable, one less so, so he was in pain and short tempered a lot of the time. And my mum appears to have no more fucks left to give. It was like having the mum I had as a teenager back. I keep typing and deleting sentences, trying to explain exactly what it was that she did to make me so upset, but it’s really difficult to pin down and it all sounds so trivial.

There was the issue of dinner. Every evening she would make it obvious that she had a plan, but then she wouldn’t do anything about it until late – not ask for help, not actually start making it, not tell us to sod off and get our own damn dinner. When we asked what we could do to help we were treated like we were nagging or told she was going to do it all herself, in a minute (or, rather, at 8.30pm when she’d run out of cider). There was dad’s birthday. He wanted to go to the pub with all of us for a drink, but there was only a half-hour window in which to do this as he had to pick up my youngest sister. Mum had spent the previous two hours looking at the newspaper, alternatively whinging about how much she had to do that afternoon (make birthday cake and dinner) while refusing any offers of help. Then A and I were told they were leaving right that minute to go to the pub, and complained at when we took five minutes to get ready. By the time we got there he’d already left, and mum launched into a tirade about how dysfunctional the family all were, how she was the only sane one and she should just give up and be dysfunctional too. She kept telling my wife she was part of the family now, as an excuse for being rude. She obviously couldn’t give a crap about spending time with us – she wasn’t working for the first three days I was there, but first she had to clean the study, then she went to have coffee with her friend because that’s what she did every Saturday, and on Sunday I can’t even remember what the excuse was, she just couldn’t be arsed. Without a trace of irony, she and dad had a long discussion about how awful child abuse was, with an extended monologue by her in the middle about how family was the most important thing and she would kill anyone who hurt one of us. When we were going to a town five minutes from her work and got ready early enough to not inconvenience her, she suddenly decided dad needed to give us a lift, even though dad wasn’t going to be ready for another hour and didn’t need to go to that town.

No one else was safe either. She shouted at my brother for smoking at midnight when we were sleeping. She called both my younger brothers assholes repeatedly, because they were both quiet and stressed out – one works incredibly long shifts at a hotel, the other keeps having unexplained seizures – and weren’t sociable or obedient enough when she wanted them to be. She called my sister’s friend a bicycle (a reference to the number of sexual partners she has) (not in the earshot of the friend at least: she once drunkenly told a boyfriend of mine she locked her bedroom door when he stayed over as he had bipolar disorder) and a dumb blonde, and then said she sleeps around because her mother spoilt her. She had moved into my youngest sister’s bedroom – my sister is moving away permanently soon, but hasn’t completely left yet. At twenty, I would’ve been terrified to have nowhere to call home if everything went wrong. My bedroom has been empty for five years this month, I don’t know why mum didn’t just take that one.

Some of this sounds ridiculous, I know. So mum didn’t want to make dinner – it’s 2015, she doesn’t have to make dinner if she doesn’t fucking want to, make someone else do it (we did, in fact, put this to her, but she wasn’t having it). It wasn’t that, though. I don’t expect to be waited on, or for there to be any sort of great fuss and fanfare about me being there. I’m happy to look after myself. But it was chaotic and unpredictable, and A and I whispered the whole time we were in the house so as not to upset anyone. Being there was like walking on eggshells, every so often breaking one and getting stabbed in the foot. No one in the family was doing anything for anyone else, and when we tried, we were shot down. They were all stressed and lashing out at the nearest living thing, when everything would have been much easier had they been supporting each other. There was no empathy and no understanding, and they were all out for themselves, with the exception of my sister closest to me in age, who tried to protect and cheer mum up so much it was painful to watch. She doesn’t get anything back, either – when she was stressed out over an interview-type situation mum and dad just insisted she would be fine and refused to hear anything she was saying.

I am finding this all really difficult to write about, for several reasons. First of all part of my head keeps telling me that I’m being ridiculous, these are all trivial things, I am a spoilt little bitch. Another tells me that I’m playing the victim, being so negative about my family, and that means I’m turning into mum, who is relentlessly negative about everyone. So I can’t be angry with her because that was always unsafe when I was younger, and because I don’t want to turn into her. I can barely remember half of what upset me while we were there either – I was so anxious to avoid a confrontation, and to smooth everything over, that I wasn’t paying attention to most of the poisonous comments floating about. I had to really resist slotting back into my role in the family: half scapegoat, half diplomat. I spent a couple of evenings in tears and dreamed about self harming at least twice.

We’re not going back. I’ve already told them we’re likely to be too busy studying to visit this Christmas. I said goodbye to the house, my old room, the dogs. We will visit people individually when they have moved out and are more settled, less stressed, but that is the last time I’m going to put myself or A through that.

I expected this trip to be hard, but not quite this hard. At least we had places to escape to when it got too much.

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Working backwards

This week has been quite difficult. We’re going on holiday for two weeks starting tomorrow, and about ten of those days will be spent at my parents’ house. My partner, my therapist, and I have all questioned whether this is a particularly sensible idea given what I’m trying to work through at the moment, but there are extenuating circumstances. My parents are trying to sell their house; once that happens they and most of my siblings will have to find other places to live, and it seems likely that most of them will end up in different houses to each other. My dad is even talking about moving to another country, on his own. The house they’re in now is the last home I had before moving away from them – I lived there from the age of 17-25. I want to see the house, the surrounding countryside, the dogs, and yes, I do want to see the people before they scatter. There won’t be an old home to visit next year, and I think it would hurt more not to go at this point.

I’ve been trying to mentally prepare myself for all of this at the same time as making practical arrangements. It was downright weird talking to mum on the phone yesterday after spending so much time talking about her in therapy recently. It’s so hard to hang on to the knowledge of how cruel and neglectful she was when I was younger when I’m faced with the older, softer version now. That’s not to say that she’s completely different – she was a nightmare last year during my graduation and wedding, the tendency to make everything about her and what is convenient for her kept popping back up. But now she has things in her life that make her happy (volunteer work in particular has made a huge difference over the last decade), she is easier to be around. This is good, because if she was still as angry and resentful with me now as she was then I don’t think we would be able to have any sort of relationship, but it also creates a fair amount of cognitive dissonance. Like I said, it’s hard to hold the two truths together in my head that yes, she was abusive but also no, she isn’t actively abusive now, and the latter does not negate the former. It can also be hard to hang on to the acceptance that she’s never going to be the mother I needed, and she’s never going to apologise. When she’s kind to me or shows some interest a little part of me perks up and starts hoping to feel loved and validated, and when her mood or behaviour changes again (five minutes later, an hour later, the next day – it always does), that part is devastated all over again.

Another thing that made this week difficult was starting to read a book about maternal narcissism. The book has been enlightening (i.e. my life! How did it get in this book?!) but upsetting. One of the main things I took away from reading the first couple of chapters was just how desperate for approval and love I am, and how that affects my behaviour. I had a really vivid and surreal dream the same day (well, that night) I started reading it as well. The specifics were just weird – aliens, popping a melting wall with a biro, as you do – but the main theme was that I was frantically trying to get to an appointment with an old therapist of mine who I was very attached to, and I kept being thwarted. I needed to see her because she was supposed to help me, and I woke up feeling devastated that I hadn’t managed to get to the appointment. The emotion rather than the detail was the important part – ever since then I’ve felt really vulnerable and little and clingy. It’s frightening and unsettling.

Tracing the feeling back a little further, there were some upsetting things going on last week as well. At a medical appointment, a doctor botched an examination in a really strange and obvious way, leaving me so disorientated I agreed to a procedure that isn’t really appropriate for my circumstances at the moment. Instead of complaining, asking to see someone else and arguing my point about the procedure, I went home confused, convinced I had imagined what had happened, and playing over and over again in my head how angry I thought they would be if I did complain. I ended up compromising: a few days later I phoned the clinic to explain that I got a bit flustered and needed another appointment to go through alternative options. Likewise, I was assessed by a psychological therapies team a couple of weeks ago, and agreed to a group I privately thought was totally unsuitable because I felt intimidated by the assessor, and then had to phone up and get my name taken off the waiting list later. I’m beginning to notice all of these examples of the extreme lengths I go to avoid any sort of confrontation, and it’s really distressing, because now I understand where that need came from. When it happens, my mind plays back all the times mum treated me like I was so mad and bad I was below contempt, and I feel so upset that this has left me unable to stand up for something as basic as competent medical treatment.

My wife and I have been reading a lot of books about abuse, neglect, attachment etc recently, and in another one a few months ago we came across the concept of emotional flashbacks: when a trigger sets off not intrusive memories or sensory phenomena, but a specific emotional state associated with the trigger. For example, when someone uses a tone of voice or a facial expression I associate with my mum in attack mode, I often start to feel this sense of incredible dread, hopelessness and desperation I remember feeling as a teenager when she was in the middle of one of her regular assassinations of my character. If I don’t work out what’s going on fairly quickly, I’ll start cringing into the surroundings (the sofa, the wall, hiding in a loo, just generally going into rabbit-in-the-headlights mode), dissociating, and being bombarded by intense urges to self harm – which is the exact way I used to react to her attacking me. And this isn’t limited to times when someone is angry with me for some reason, it can be a person walking past me on a street, or two other people arguing, if one is being particularly contemptuous or invalidating. This is different to the flashbacks I used to get of being raped: they usually involved vivid, intrusive memories of the rape itself, whereas my experience of emotional flashbacks has never had memories attached to it until very recently. Until recently, it was only the end result of acting on the urges to self harm that alerted me to the fact that anything was wrong. Then I started noticing a particular emotion that preceded the self harm. Then I started realising that there really were triggers for that emotion, it hadn’t just appeared out of nowhere. Then I made the connection that the triggers were all related to emotional abuse.

Having to work backwards is really confusing, but I think I am slowly beginning to notice earlier on in the chain. I haven’t had any thoughts of harming myself for a few weeks, after a particularly serious incident a bit less than a month ago. This week the thoughts came back. This was scary and frustrating, because I don’t WANT to be doing this for the rest of my life, and I get angry with myself for not being ‘better’. But instead of taking it for granted that I wanted to hurt myself because I wanted to hurt myself, I asked myself why the thoughts were there, and managed to find direct links to the book, the dream, and the fact that the last injury is healing now, which starts up a chorus of “well it wasn’t that serious then!” in my head. And all of that helped a little bit, because now I don’t feel so crazy, I feel like the thoughts are an understandable reaction to triggers that sent me into painful emotional states I experienced in the past.

I am an intelligent person who has spent half her life in and out of therapy, so insight was never a huge problem. It’s not as straightforward as having insight, though. Taking my feelings, experiences and memories seriously, and naming others’ treatment of me as unacceptable, is difficult when I’ve been programmed to take up invalidating myself where others left off. It’s also hard for me – even when I have noticed that I’m stuck in a flashback – to find the motivation to work through the feelings and not DO something quick and self destructive to dull the pain temporarily. That temptation to give in scares me. This is progress, at least: there have been times in my life when carrying on as I was felt far more terrifying than the alternative.

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