Bipolar highs: a runaway train

I’ve been delivering talks to delegates on Mind training for almost a year now. I’ve been invited to speak at a range of different courses run by Mind – many have been “open access” courses that anyone with an interest can book themselves onto, others have been held in companies that need mental health training for their staff. I generally speak for about 45 minutes about what it’s like to live with bipolar disorder, with additional time for questions. I’ve spoken to service users, carers, and people in frontline health and social care roles, as well employees at large private sector organisations.

One of the questions people most often ask is, “When you feel you are going high, are you able to stop yourself?” It’s an interesting question, because two years ago when I was re-diagnosed with bipolar, I would have responded with a definite, “No.” At that point, I didn’t really feel my mood shifts were anything to do with me. It seemed like a slide into depression or a flip into hypomania “just happened”, regardless of what was going on in my life. The changes felt unexpected, as well as downright unfair, and I looked entirely towards mental health professionals for answers. I believed that if my Consultant could just find the right drug, I would be fixed. It seemed like my life had been hijacked by bipolar and I felt like a victim, but I was sure I could return to how I was pre-relapse and get back into my job, and all would be well.

I first started seeing a clinical psychologist in autumn 2011, after six months under Consultant care. I was still searching for the perfect drug, and becoming frustrated that I had tried three meds already without “success”. At assessment, the psychologist suggested that one of the things we might need to work on together was acceptance of my condition and what I needed to do to manage it. I though she was talking rubbish. I happily identified as bipolar. I even had a “BipolarBlogger” Twitter name and email address. But wasn’t my job just to take the meds as directed? I didn’t believe that I could manage my own moods, and didn’t see why I ought to take any personal responsibility for management of my bipolar when I had a Consultant psychiatrist on the case.

It probably took me another six months to come to terms with how things really were, to accept that my moods, in fact, generally had a trigger, a kind of a seed that under the right circumstances blossomed into a full episode. It took another major step to accept that although I couldn’t always control exposure to triggers, how I reacted once my mood began to change could sometimes impact on whether it fizzled out or carried on moving in that same direction. I began to admit that a self-management plan was going to be just as important as taking meds, perhaps at times even more so.

Hypo/mania is the area where I had to put in the most work. I honestly don’t know why, but after decades of depression having the upper hand, in this episode lows have come a poor second to highs. Having little past experience in hypo/mania, I have often had to make my responses up as I go along, experimenting to see what works and what doesn’t.  And I have finally come to the place where I can say, “Yes.” Yes, if I really put my mind to it, and if I can catch it when it is small/early enough, I can pull back from a high. I always feel that a high is a bit like being put in charge a train. At first, being allowed to drive a train is fun. I feel rather special, because I am in charge of a train and other, more ordinary, people aren’t. It’s exciting to whizz through unfamiliar countryside and I feel exhilarated, energised. As the train begins to go faster, I fail to notice the scenery outside the window has become slightly blurred until I begin to feel a little bit sick. And then there comes a moment when I realise the brakes are off and it’s too late to put them on. The train has now gathered a horrible momentum of its own – and I say horrible, because elated mania is not in my emotional repertoire. It’s at this point that I remember there is only ever one destination for the train, and that’s dysphoric mania, an unholy mixed mood of manic energy and depressive despair. Now I look desperately around for an emergency exit, a way out, because feeling so horrendously out of control is unendurable. I would happily chuck myself out of my train and in front of one travelling in the opposite direction. But I’m stuck in the cab, and the only way out now is to douse the fire in the boiler. And things have gone too far for me do that alone.

It’s not unreasonable, I always thought, to want to have a try at being a train driver. Why shouldn’t I experience that thrill? Think of all the people who wish they could drive a train like that. Think of how jealous they must be! I didn’t see it was for me to control the train’s speed. Someone else, I used to think, should take responsibility. Someone else should have checked the brakes before I got on. Someone else should tested the speed gauge. And someone else should edge the tracks with crash mats, just in case I do need to dive off just when it begins to all be a bit much.

I’ve been on the train a number of times now, with the same outcome. The euphoria of the early stages of a high are deliciously seductive, but I now have to accept that I have a narrow window between stepping onto the footplate and that moment when I start to feel sick. That is the absolute last point that I can get down from the train, before it runs away with me. And if things carry on and become out of control, the dampening effect I need can only be achieved by high doses of strong antipsychotic drugs, something I hate almost as much as the high itself.

I have said that I can’t always control triggers and indeed sometimes I will find myself getting onto the train before I’ve noticed. So what do I do differently now? I don’t shovel on any more coal. The fuel for a high can be anything that gets me “emotionally aroused” – and it doesn’t have to cause elation. Anything that makes me agitated, jittery, irritated or excited can be fuel. Rushing to an appointment can be fuel. Watching a scary movie can be fuel. So can having an argument or confrontation, attending social events, or listening to fast tempo music. Exercise can be a kind of fuel, and at times writing can too. The basic rule for stepping off the train is: whatever I feel like doing, do the opposite. Switching the fast music for relaxation music is like throwing a lump of coal out of the window. So is switching running for yoga. Swapping a day of social engagements for one of relaxation exercises and aromatherapy baths ditches several pieces of coal at once.

I still resent having to slow the train down. I still complain and whinge about it, because I’m only human. I’d like to have my cake and eat it, enjoy the early, elated parts of the journey without things getting out of control. But it’s an inescapable fact that the longer I am on, the harder it is to get off, and shovelling on more coal can (for me) only lead to dysphoric mania. Not only does that kind of mixed mood state feel indescribably awful, it is also thought carry a particularly high risk of suicide. So I have finally had to accept that if I want to stay as well and safe as I can, I have, reluctantly, to get off the train.

 

If depression were a word cloud…

If depression were a word cloud, it would be made up of a few words, repeated again and again. Because depression shrinks your world, narrowing the focus of your life down to a few, miserable feelings. No matter how vibrant and complex someone’s normal personality, depression takes that personality and compresses it, squeezes most of the life out of it. I’ve only been back in the land of depression for just over a week, yet it feels like all that’s left of me is this same old cloud of feelings.

Trapped. One thing that never ceases to amaze me is that it takes no longer than a single day of low mood to have me totally back in the cupboard. After over a quarter of a century of practice in being depressed, my mind has some kind of mental shortcut – like a shortcut on a desktop – that takes me right into depression mode. Although my partner reassures me that it’s not the same this time, that I am older and wiser, have better coping skills now and a functioning recovery plan, it feels the same. The same as it did two years ago, 14 years ago, 20, 25.  And once I’m trapped in the cupboard time loses meaning; going through another day depressed is as terrifying a proposition as going through another year, and I can’t see any way out.

Hollow. Empty on the inside. Missing all the interests, the drivers, the energy that keeps me writing, connecting, going out, trying new things. I can’t handle new and I can’t handle different. It’s a struggle enough to cope with the familiar; even that quickly separates out good familiar (comforting, safe spaces, safe people) and bad familiar (anything reminiscent of past depression, anything anxiety-provoking).

Bored. Things that ought to be entertaining are just too much mental effort to get into. I can’t focus. I can’t learn the basic rules of a casual video game. I go to a web page only to sit staring at the screen with no idea of my original intention in clicking the link. My eyes run over the same pieces of text.

Frightened. “Only boring people get bored!” my mother used to tell me as a kid, and now I fear she’s right. I fear than in my depression I am both bored and boring. Capable only of chalking up such splendid achievements as doing a little washing up, I know I can’t be fun to be around. So I begin to fear that my partner, my children, my friends – no-one will want to be around me. Especially as this depression goes on and on, as I fear it will. I have already started to think that I will never get back to work, that the plans I have made to get back into the workplace will just fall by the wayside and disintegrate.

Lonely.  I feel cut off, shut off in my flat while my partner’s at work. Outside the front window, life goes on. Dogs are left tied up outside the Co-op to yap or whine. Preschoolers zip up and down on scooters. Acquaintances bump into each other near the flower shop, ask after partners, chat about how work is going. I could go down and be among them, but there’s a snag: despite my loneliness, I am frightened of people. Down at pavement level, I would be terrified that somebody would speak to me, that I would be expected to reply. My phone has rung twice this morning and both times I have watched in terror, panic building in my chest, my breath becoming rapid and shallow, trying to pull myself back from a full on panic attack. It doesn’t really matter who it is. Even if it’s someone I know and love, right now I’m just not capable of engaging in that obvious conversational opener, “How are you?”

Tired. I woke up at 11am this morning, having gone to bed around midnight. I was in bed so long that my back started to hurt, but even that only pulled my close to consciousness rather than all the way there. I dragged myself to a standing position, went to the bathroom, looked at myself in the mirror. There’s been a change, even in a week. My skin seems sallow, and there are grey bags underneath my eyes. I don’t look as alive as I did a month ago. Since 3pm I have been fighting the urge to nap, but I’ll continue to hold off if I possibly can.

Bleak. Last week, my partner took me to an exhibition of Ansel Adams’ stunning black and white landscape photos. Usually such gorgeous shots of the waterfalls, mountains and geysers of America’s National Parks would fill me with amazement. Nature, I would think, is astonishing! Walking around the exhibition, I began to feel that nature was not so much so much astonishing, as indifferent. The mountains of Alaska or Wyoming do not know that human beings exist. Nor would they care. We might well all die, I thought, of plague or famine or even of nuclear war, and these great protuberances of rock would carry on, implacable, testament to our utter insignificance.

Guilty. So guilty, about so many things. I feel guilty staring a the dusty and dirt around me without being able to summon up the energy to address them, guilty that the flat will still be in such a state when my partner gets in from a full day at work. Perversely, I feel guilty both about being as depressed as I am (putting my partner through this yet again, feeling unable to complete important work tasks, not being the mum I want to be) whilst also feeling guilty about not being depressed enough. For I have been so much worse than this, so many times. I have so many online friends who are in so much deeper, darker places. And the usual pattern is that these down swings last a short time. Most likely I’ll swing up again, to normal or beyond, within a week. And yet I whinge on, to my partner, to Twitter, about how miserable I am here in this pathetic, moderate depression. What right have I to complain when others are locked in a dark and lonely room for months or even years?

Even now, I’m worrying about how dull this post is, how self-centred and tedious. There’s nothing I’d like more that to step off of my cloud and feel like me again, to stop being this way. But I don’t know how.

Don’t manufacture my meaning: a response to Darian Leader

Does illness have a meaning? Does mental distress represent underlying patterns? In experiencing the major mood shifts that constitute bipolar disorder, are we playing out unconscious thoughts or feelings from our earliest years? Darian Leader, writing in the Guardian (Bipolar memoirs: What have I done?), is sure that there is more meaning to be found in psychoanalytic interpretations of bipolar than in the continually expanding and ever more complex diagnostic categories of the “bipolar spectrum”.

Judging by reactions to Leader’s article, people with the condition hold a whole range of opinions on the matter. Some people feel that it is useless, insulting even, to seek meaning in suffering. For those who hold that bipolar is essentially a disorder of genetic quirks leading to poorly balanced brain chemistry, there is no underlying meaning to be sought. The medium, or rather the malady, is the message. There is no need to dig, to explore, to search for significance.

Bipolar sufferers with a strong personal faith may appear to at odds with those whose understanding of the condition is rooted in biology. But for people with faith, too, there may be little need to establish “meaning” in actual mood states. The emphasis may be less on the behaviours driven by bipolar, than on the individual’s response to pain and the potential for suffering to lead to greater personal and spiritual development.

Speaking for myself, I am not sure 100% sure that my bipolar has meaning, but neither am I convinced that it doesn’t. Bipolar is the biggest emotional thing that has ever happened to me. Distressing life events – bereavement, divorce, or debt – the kind of things that friends describe as “the worse thing that ever happened to them”, pale into insignificance in comparison acute, suicidal depression or the agitated distress of mixed mood. It seems to me quite natural to want to find some sort of context or even, yes, meaning for that the suffering I experience, just as I felt the need to look for meaning in the acute physical pain of childbirth.

The job of psychoanalysts is to work with the client to help them contextualise distress within their early experiences and current unconscious mental processes. I am not anti-psychoanalysis; indeed a decade ago I made much use of Jungian techniques to explore early memories and how they connected to my current mental distress. I used all kinds of art and writing techniques to dig deeper than my surface feelings about my illness. Through these techniques I learned that my feelings about my early experiences were legitimate, and that I needed to look after my younger, damaged self in order to more forward. I felt empowered by having found some meaning that resonated for me.

Where I take issue with Leader’s current focus on bipolar is that he is discerning and ascribing meaning to a condition that is not his. It’s true that he has clinical practice to draw on. It’s also true that he has sought out first hand accounts of bipolar, referencing a number of well-known bipolar memoirs as well as therapists’ case studies. As someone in the process of writing a memoir about growing up with untreated, uncontrolled bipolar, I of course want to people to read life writing about the condition. My goal is that eventually people will be able read my book and have improved insight into what it is like to live with the bipolar. But it is, in my view, a mistake to believe that reading bipolar memoirs and treating bipolar patients gives you permission to determine the “meaning” of bipolar disorder from the outside.

Leader’s article (he has a book coming out, so I assume this is just a snippet) focuses heavily on the accounts of people who experience mania, and in particular on the financial irresponsibility that can be characteristic of a high. The spending sprees of mania, he rightly points out, are often seen as “selfish, narcissistic rampages.” Leader, however, discerns a form of altruism at play. Manic people, he states, often squander money on other people’s behalf. Looking back to the childhoods of writers including as Kay Redfield Jamison and Stephen Fry, Leader identifies experiences in their childhoods which might have led them to feel grateful for their survival. He goes on to suggest that “the manic person might in her behaviour be showing her perception of being in debt, and the altruistic side of her manic episode might be an attempt to cancel the debt.” This sense of debt, Leader suggests, cannot easily be resolved for the bipolar person. It “crystallises neither as paranoia (‘The other is responsible’) nor as melancholia (‘I am responsible’), seesawing instead between highs and lows. If responsibility departs in the mania, it returns with a vengeance in the depression.”

At this point, I am so very tempted to contradict Leader, to bring in the accounts of bipolar people I know (and I am in contact with very many bipolars every single week via my blog and through Twitter) to explain how counterintuitive I find his gratitude/altruism theory. I could go on at length about how it is far more common to find bipolars who felt miserable, worthless and alone in their childhoods. It doesn’t make me look particularly good, but I could share my own example, along with many others, of hypo/maniac episodes filled with entirely self-centred, pleasure-seeking behaviours.

But I won’t go there, because my central point is this: a person does not get to decide the meaning of another’s illness. Not even if they share the same diagnosis, and certainly if they do not. A therapist might well become involved in guiding, assisting a client towards a meaningful interpretation of their condition. But the client, not the therapist, must discern that meaning in order for it to resonate, to be of use in living with the condition. Every time somebody with no personal experience of bipolar tells us what it represents, or what our actions mean when we are in acute phases, they are imposing their interpretation on our lives. I don’t believe I have the right to ascribe meaning to the behaviours and feelings of other bipolars; why Leader seems to think that he can analyse the entire bipolar community from the outside, based on books and case studies, I’m really not sure.

What I see at play here is the tension between “experts by training” and “experts by experience”. It would have been laudable of Leader to simply have exhorted people to pay greater attention to the lived experiences of bipolar people. The diagnostic categories can be confusing, and there is much truth in the idea that shared first hand experiences can by much more powerful than the medical profession’s parcelling up of mental health conditions into numbers or symptoms and number of days. But having wrested power from the doctors and given it back to bipolar writers, Leader simply superimposes another “expert by training” worldview on bipolar people’s experiences. It takes no account of people’s personal sense of meaning, nor of those bipolar people who feel strongly that there really is none.

Telling people to listen to us while shutting us up at the same time. More about selling books, from where I am sitting, than doing any service to the bipolar community.

 

 

 

Pride and pragmatism

I’ve always been a bit confused about pride. My parents were atheists, but my allegedly Anglican grandma (although I never knew her to go to church beyond the hatch, match and dispatch variety of service) would tell me that pride was a sin. This view was sometimes echoed in school assemblies, leaving me baffled when those very same teachers, frustrated by untidy handwriting and ink blots, would tell me that I needed to take more pride in my work.

When I signed up as a student midwife in 2000, our lecturers were very clear that we should feel proud, that in electing to become midwives we were embracing a special role as autonomous practitioners. “When you walk down the corridor in that uniform, you can hold your head high,” a lecturer told us on our first day, “because. You. Are. A. Mid. WIFE!” We got the message: we were supposed to see ourselves as a cut above mere nurses.

I couldn’t wait to get started. I was already a qualified  antenatal teacher running classes for the National Childbirth Trust, but I yearned to be in the delivery room, to be what our lecturers called “hands on”. My clinical mentors taught me to practice skillfully, to combine the science of the university with the art of the delivery room, to help women give birth where possible without the need of doctors, without the need for intervention. I took as much pride in carefully catching a baby or skilfully delivering a placenta as I did in my academic work. “Midwifery is the best job in the world!” my delivery suite mentor would say, before praising my intuition, my dexterity, my commitment to our clients. I knew she was right on all counts.

I quickly began to feel that midwifery was my absolute vocation, that if you sliced me down the middle you would see not a collection of viscera but “Mid. WIFE!” I started to feel that I was born to be a midwife, that I excelled at it and was already one step ahead of the rest of my cohort. The work was stressful, naturally. I was juggling classes and essays with clinical shifts and a young family. I was working people in extreme pain, where bad outcomes were possible, sometimes rushing into theatre, my heart in my mouth. I was sleeping very little, yet I felt more than able to live with the stress, to use it as a springboard for success. I was flying high, already envisioning a bright future in the profession, and so very proud of my progress.

Pride, my grandma also liked to remind me, comes before a fall.

I have seen mental heath crisis described as the point where you are no longer able to take care of yourself, where you fear that without immediate support your mind is in danger of snapping. For me, there is an additional element to a crisis, that of being stripped of all pride. Because it’s the point where I can no longer pretend, no longer put up a front or wear a mask of normality. It’s the point at which I no longer have a choice about who gets to see my suffering, and where. It’s all out there, in public, whether I like it or not.

Pride (or what I would now recognise as grandiosity, a tell-tale sign of hypomania, just like sensation of flying high, like the sleeplessness) came before an overdose. It came before being wheeled by paramedics through the front door of the very hospital I worked in. Pride came before realising that the chair of the local NCT was working on reception, before hearing the horror in her voice as she left her post and ran towards my trolley. Ensconced in A&E, numerous concerned relatives stood over me as I crawled around the cubicle floor in a hospital gown, leaning over an emesis basin and shoving my own fingers down my throat in response to the unbearable nausea. I no longer felt human, because I didn’t have any of the things that made up my persona – the ability communicate, the ability to relate to other people, the ability to care who saw my knickers.

In the 11 years since the overdose, yet my life has continued to be dominated by the peculiar tension between bipolar disorder and pride. I have continued to swing from the pathological pride of grandiosity to the pain of feeling stripped bare, the pain of having to allow unfriendly colleagues, bemused in-laws or unsympathetic duty doctors see just how desperate I am.

In my eight years of remission, I build what felt like a solid career with the National Probation Service. I did well, moving up through the ranks, doubling income in a few years. Was I wrong to be proud of my achievements? Of course not. Did I know how to separate pride in my work from bipolar pride, know how to notice the subtle slide into grandiosity? Unfortunately, no. The fall came when I could not stop crying openly at work and had to take leave. The fall continued when I lost my managerial contract, was forced to take step backwards to practitioner grade. I was once a skilled report writer, pulling together complex information from a variety of sources; after the fall, I couldn’t read a single page letter from the DWP. I found it humiliating to lost my work identity and it took me a long time to process my shift from professional person to “client material”.

As I consolidate my recovery, I am beginning to return to the world of work. If I have learned one thing from this most recent episode, though, it’s that this time I need to be pragmatic. I could easily take on more and more work; I like it when people to ask me to undertake jobs/tasks, and I hate to say no. And for a time, I would be fine doing that. Experience has taught me, however, that I cannot sustain it long term. The prideful part of me wants to prove how I can achieve in my new field, how high I can fly and how quickly I can get there but the newer, more pragmatic me, means relinquishing the buzz I get from pride.

I hope, though, that it also means reducing the pain of my next fall.

 

 

Mind the gap!

What a lot of gaps there are for mental health service users to fall into! First, there’s the gap between symptoms developing and receiving a correct diagnosis (which will probably be at least ten years, if you have bipolar). Even once a diagnosis is agreed on, there is often a gap between what we think will help, and what our care team believes will help us. Even supposing we agree with clinicians’ ideas we sometimes find there’s a gap between the treatment that’s recommended, and what commissioners will actually fund (for example, the evidence base may suggest we need therapy, but we end up getting drugs; or national guidelines promote the use of therapy A, but only therapy B is available in our area.)

Perhaps the biggest gap of all is the chasm between services concerned with our mental wellbeing, and those caring for our physical health. Last year the King’s Fund and the Centre for Mental Health estimated that over 4 million people in England alone live with both a long-term physical health condition and a mental health problem. If you’re in that situation, I’m betting you’re already well aware of the gap.

If your initial diagnosis is a mental health problem, it’s all too common for doctors to view any physical issues as some sort of manifestation of your mental health problem. Sometimes, of course, physical symptoms can be caused by mental distress – for example, when highly anxious, I sometimes vomit repeatedly – but that doesn’t mean that every physical issue is rooted in our mental health. All too often, genuine physical symptoms, whether caused by psychiatric meds or simply an unrelated coincidence, are written off as “acting out”, “making it up” or “attention seeking”. Becoming acutely physically well is a risky thing to do in a setting where staff view your symptoms as “behaviours”, rather than indicators of a physical problem. Equally, being admitted to a medical or surgical ward could precipitate a psychiatric emergency if you are not provided with your regular mental health drugs.

The technical term for this is “diagnostic overshadowing”. If you are under the care of a mental health team, your mental health diagnosis looms so large in their minds that they are unable to see real bodily complaints as separate from your mental health. Meanwhile, those with long-term physical health problems can find their newer mental health symptoms written off as a part and parcel of their preceding disability. “When I went to my GP about my mental health,” a service user with multiple sclerosis told me, “he just said, well, you’re in pain – of course you’re depressed.” As a consequence, the GP saw it as more important to act on the pain than it was to investigate and treat the depression.

It’s clear to me that there is a very noticeable split in care, and it’s not just affecting people with long term physical health needs. My psychiatrist is great, but sees himself very firmly in the mental health camp. He does not appear comfortable dealing with my physical health issues – even though they are directly caused by the drugs he prescribes. Conversely, my GP practice (which I also think is fantastic) is brilliant about trying to address my medically-induced bowel disorder, but seems anxious about issues like lithium. Any change in my lithium blood serum, and I am asked what I am “going to do about it”, i.e. whether I intend to contact my consultant for advice. I don’t quite get why it’s seen as being down to me, the patient, to be the messenger between primary care and mental health care, but apparently that’s how it is.

Over the past few weeks it has been heartbreaking to read tweets by Sarah (@acarerseyes), who blogs at acarerseyes.wordpress.com about caring for her partner, Chris. Chris is currently in a psychiatric ward and appears to have physically deteriorated quite rapidly since he was admitted. Every time Sarah visits she is shocked at how ill he appears, and has witnessed him repeatedly vomiting, complaining of excessive thirst, seeming dizzy and even passing out. When Sarah arranged to meet staff via a ward round, Chris was told, “You are drinking excessive amounts of fluid to make yourself sick, we don’t know why but probably for attention.” It has taken great patience and persistence on Sarah’s part to ensure Chris gets medical testing and investigation, but sadly she is still no closer to getting any answers. And as she and I frequently discuss, what happens to a patient in Chris’s situation who doesn’t have a family member to advocate for them?

On the other side of the divide, another Twitter friend, @FemalePTSD (http://femaleptsd.wordpress.com), has been under the care of her local Home Treatment Team (HTT) for some time but recently found herself at A&E after taking an unintended overdose. She was checked over and because she was found to have tachycardia (abnormally high heart rate), she was transferred to the Medical Assessment Unit. F waited an unacceptably long time on a trolley, without being formally admitted to a ward, or given anything much to eat. During this time she repeatedly asked medical staff to contact her mental health care providers, justifiably afraid that HTT would believe she had seriously harmed herself and might even ask police colleagues to help break into her home. Her request was not carried out. Thankfully, she still has an intact front door, but anxiety about this issue hardly seems likely to have helped her heart rate return to normal.

So what’s to be done? The King’s Fund report makes a number of recommendations for better treatment of people with comorbid physical and mental health problems. Unsurprisingly, they are in favour of better integration between the two sides, and recommend that the new Clinical Commissioning Groups (CCGs), which came into being on 1^st April, make this a strategic priority. One fairly common-sense suggestion is that all kinds of healthcare staff, whatever setting they work in, should be offered training about mental health conditions to improve “psychological literacy” (wonderful phrase) and should be equipped with some basic skills for dealing with people in mental distress. There are no specific suggestions for training, but I would think that something like Mental Health First Aid would be ideal for this.

Another useful recommendation is that mental health support staff should placed in primary care settings like GP practices or local health clinics (as midwives, health visitors and district nurses often are) or within chronic disease management programmes like pain services or diabetes clinics. This is already happening in some areas, with Community Psychiatric Nurses being asked to work in primary care. The report also notes that psychiatric liaison to general hospitals requires improvement – this will come as no surprise to anyone who has attended A&E or been admitted to a general hospital ward as a result of mental distress. Liaison services are also highlighted as an example of good practice No Health Without Mental Health, a guide for the new CCGs produced by Mind, Rethink, the Mental Health Foundation, the National Service User Network and a number of other mental health organisations.

It’s interesting that the report calls not for more resources, but for the ones we have to be delivered differently. In my view, the biggest block to these recommendations is likely to be staff resistance. People struggle with change, and those in specialist teams are used to working only with those referred by “gatekeeper” GPs and are likely to find working along a the less serious part of the mental health spectrum challenging. Similarly, training everyone from surgeons to GPs’ receptionists in basic mental health is likely to meet with scepticism, if not downright obstruction (I’m thinking in particular here of a number of acute sector consultants I have worked with!).

As a service user, it’s hard for me to know how to try and nudge members of my clinicians towards more of a team approach, but I’m going to have to raise it soon. Next month I’ll be meeting with my Consultant for the first time since February to discuss a planned discharge to primary care. It’s a step forward, a mark of real progress, so I’m pleased. But my major concern is whether and how my GP will speak to my Consultant if she has any concerns about lithium levels, recurrence of symptoms, and so on, without me having to play the go-between. Because I don’t want get lost in the gap.

 

Psychotic: what’s in a name?

On BBC1’s One Show Alex Jones recently aired a 2009 quote from Danny Boyle. To be a film-maker, according to Boyle, “you have to be psychotic in your desire to do something.” Around the same time, Caitlin Moran tweeted about Coronation Street Actor Bill Roache’s “celebrity with hunt” comments, asking, “When can we start openly saying ‘His massive psychotic breakdown’?”

I saw members of Twitter’s mental health community immediately take exception to these misuses of what is, after all, a very specific clinical term. It got me thinking about the word, and how and why our culture uses it. On paper, everything’s fine. The Oxford English Dictionary holds no other definition of the term than, “relating to, denoting, or suffering from a psychosis”. The first few pages of a Google search for “psychotic” are entirely filled with mental health resources. Even the Urban Dictionary gets it more or less right (including a welcome reminder that there is no correlation between psychosis and violence).

Despite this, inaccurate use of the word still crops up in the media fairly regularly, with people being described as being in “a psychotic frenzy”, or referred to as “psychotic” when they are actually just extremely angry. Search Twitter for “psychotic” and you will frequently find it deployed where people actually mean enraged, strange, unpleasant to others, or off the scale in terms of intensity (it often seems to be used to refer to obsessive fans of boy bands or teen idols, but I guess this is also what Boyle was driving at when suggesting the necessary qualities of a filmmaker).

I distinctly remember when I first came across the word. It was 1993 and I was sitting on the top floor of my university library, going through a pile of abnormal psychology books. Something had been wrong with me since adolescence. I didn’t know what, and nobody in the medical profession seemed in any hurry to tell me, but combing through the textbooks I began to wonder if I might have manic depression (as it was then referred to). Yet I wasn’t sure. Some of the symptoms listed – the mood swings and the periods of sleeplessness – sounded very familiar, but others were outside my experience. I didn’t have delusions or hallucinations, but the book stated that there were only two categories of mental disorder, and that bipolar sat in the psychotic, not the neurotic, camp. The message I took from this was that psychosis was something that could potentially happen to me. I wasn’t fundamentally different from those manic depressives who did experience psychosis. I had just been dealt a different hand of symptomatic cards.

The first time I ever heard someone speak the word aloud came about a year later, not long after I had been formally diagnosed as bipolar. I was studying a module called The Modern American Novel, and I had to attend a lecture on Brett Eaton Ellis’s American Psycho. The lecturer had a lot to say on the subject of protagonist Patrick Bateman’s mental pathology, not much of it accurate. He spoke repeatedly about “the psychotic person”, their propensity for violence, and their inability to empathise. It was clear to me that the lecturer was confusing the terms “psychotic” and “psychopathic”. Every time he used the word, and used it incorrectly, I sank lower and lower down in my seat. I could have challenged him, but who would want to out themselves as having a diagnosis that might result in psychosis, when the whole class had just been told psychosis drives people to torture and murder?

In theory, the classic psychotic presentation involves someone completely losing touch with accepted reality. No matter how much evidence to the contrary others provide, their beliefs remain fixed and unshakable – hence the term “psychotic” often goes along with the term “break”, implying a fissure between the person and the reality everyone else subscribes to. Actually, of course, it’s much more complex and subtle than that and, as with many psychiatric symptoms, there’s probably something of a continuum or spectrum. After all, a study in the British Medical Journal found that 12.5% of the general population (so that’s people without any mental health diagnosis at all) reported experiencing at least one psychotic symptom such as a paranoid delusion or a hallucination. So once you ask the right questions, you find that psychosis is neither rare, nor restricted to the seriously mentally unwell.

In any event, somebody must’ve shuffled the deck again, because these days I do have delusions as well as hallucinations. Not many, not often, but the ones I have are weird and very scary, not just because of the content, but because they make me doubt my own ability to know what’s real and what isn’t. I don’t think I could possibly explain, even if I wrote for an hour, just how frightening it is to have the boundaries between “real” and “not real” become permeable, how you can never quite trust yourself again once that has happened to you.

For me, as I think for many people, there is a moment when I know on a gut level that something dreadful is happening, and that it’s down to certain forces that wish me harm. Some people know that they are being persecuted by agencies such as the security services, or by specific individuals with something against them. For me, the source of the threat might best be described as dark forces. Sometimes I feel that I am under scrutiny by an evil, omniscient being who uses technology to get at me (especially my computer – my smartphone is fine, even when using the same wireless connection, because that’s the thing, there is no logic here). I feel that I can be seen through my screen, but it’s like one-way glass. I never get to see who’s watching me, even if I wanted to, and I really don’t think I do.

At other times the dark forces are less clear, stranger. Last summer certain fabrics felt dangerous because their colour or pattern was aligned with the dark forces; one skirt in particular was out to get me and I was desperate to get it out of my house, but I couldn’t touch it. Yes, I know that’s ridiculous, but it’s a classic example of how even if I only believe the delusion 50%, if the other 50% of me tries to analyse it and intellectualise it, I still can’t talk myself out of the belief. The delusions work on an older, more primal bit of my brain and I have all the ancient, physical responses that animals display in a threatening situation. My palms sweat, I feel cold. I shake. I can’t breathe properly. I want to run, but I don’t believe for a minute that I can outrun the dark forces.

My psychiatrist seems uncomfortable with defining my experiences as psychotic. Maybe for him, my disconnection with reality isn’t enough compared with his other patients. In the letters he sends to my GP, he describes them as “psychotic-type phenomena” which sounds to me like a way of describing a thing without actually referring to the… thing. And I note with interest that I while writing this post, I have been tempted to put terms like dark forces or get at me in quotation marks, maybe to prove to myself and anyone reading that I know what nonsense it all is. But I took those quotation marks away, because actually they were a kind of self betrayal, a denial of just how real it all felt to me at the time.

So there it is, psychotic, or at least as close as I get to it, anyway. No freaky obsessions; no violent anger; no callous murder and dismemberment. Just a 38-year-old woman under the duvet, hiding from her own skirt.

 

 

 

Ever wondered what I sound like? New Converge podcast

Ever wondered what I sound like?

Here’s a heads up that as of this morning you can catch me in conversation with Philippa Willitts (who you can also find on Twitter as @incurablehippie) on a brand new podcast called Converge. Converge is all about activism and challenging discrimination, and aims to cover a range of issues including feminism, anti-racism, LGBT (lesbian, gay, bisexual and transgender) issues and disability rights. It was an honour to talk about mental health issues for the inaugural podcast and I’m sure Philippa would love your feedback.

Take a listen!