What have I done?


Yesterday I forced myself to be more honest than I have ever been about my suicidality. I told the Home Treatment Team Consultant, the team Registrar and my partner Tom everything I had been thinking about and doing to try and arrange my own death. I disclosed that I had made an email address under and assumed identity for making enquiries related to the project. I told them that I had started taking out sums of cash to visit numerous pharmacies to buy over the counter drugs to assist in an overdose, and that over the next few days I planned to take out more, up to my daily maximum, in order to make further useful purchases (I won’t go into the details as it’s unfair on others to have to read about the horrible minutiae of death), including renting a hotel room somewhere in central London. I was honest about having read enough on pro-suicide websites to know what those minutiae should be. I was also honest about having more than one plan, and that among other things I had been looking into buying nembutal online and researching train timetables.

I tried to explain that I felt that my brain was at war with itself. I was no longer having some many intrusive, shocking thoughts that caused me distress. On the contrary, the part of my mind which was working in opposition to my rational self was calm, almost relaxed, and very sneaky. As I waited at a tube station my rational mind thought nothing more than, “We should be on time for my appointment, that’s good” but sneaky brain was thinking, “Oh, look, there’s the barrier passengers should not cross. How easy it would be to do so, wouldn’t it?”

The thing about sneaky brain is it is running all the time in the background, like a piece of software that’s running while you’re doing other tasks. I am not really aware of sneaky brain until I get a pop-up message: “It looks like you’re taking out some cash! Wouldn’t you like to take out another £280 and hide it between the mattress and the bed slats?” “Tom’s letting you sort out your meds for the next few days, why don’t you see if you can slide that blister pack of 400mg quetipaine into  your pocket? He’ll never know.” It was sneaky brain that found me suddenly switching from browsing Facebook to funeral planning, reading emails to researching relative lethality of methods.

Yesterday’s disclosures were a result of the sheer exhaustion of the tussle between sneaky brain and rational brain. It was also the result of a fear that sneaky brain might entice me to do something that left me living, yet gravely harmed and thinking, “What have I done?” I didn’t think I could take the pushing and pulling any more and the only way I felt I could stop it was to “out” sneaky brain and its doings. As a result of this, I ended up handing over my debit and credit cards, so I now have access to no more money than the £3.50 in my purse. All my meds, whether from GP or HTT are hidden away by Tom, who is now watching me like a hawk around stations and driving me places so I don’t have to take trains.

Initially, I felt a huge sense of relief. I was able to enjoy a trip to a museum with Tom after the appointment (although I almost had a panic attack at one point, which I just about managed to breathe myself out of). I felt, and I am told seemed, in better spirits all day. But this morning I woke and and my very thought: what have I done? WHAT HAVE YOU DONE, CHARLOTTE? You have given away your every means of escape and now you are trapped, and it’s all your own fault. You are down in this pit of darkness and you have given away your torch and encouraged others to roll up the rope ladder. Sensible brain has vanished with the ladder and it’s just you and sneaky brain down here, becoming increasingly desperate. What have you done?

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An impossible ask

I’m going to start with a massive TRIGGER WARNING. This post contains numerous references to suicidal thoughts and descriptions of methods, as well as intrusive thoughts of self-harm. Please don’t read on if this could be damaging to you.

After last week’s referral I am continuing to see the Home Treatment Team and, as last time, the experience is something of a mixed bag.

By the end of last week I was feeling more and more despondent about my life, in particular about loss of the work and the activism I had so carefully built up over the past few months. On Thursday and Friday I had been scheduled to attend the Royal College of Psychiatrists General Adult Psychiatry Conference as a service user rep, and had been greatly looking forward to this. Seeing people from the mental health community tweeting about sessions I was too sick to attend really hurt me, as did my increasing awareness that I was not going to be well enough to deliver my beloved Mental Health First Aid course at the end of the month.

Not being able to work was (and still is) feeding into a sense of being both helpless and useless, a sense of there being no point to my existence. More and more there seems little point in everything I try to do, to create, to establish when a mood switch that changes as quickly as the direction of wind can ruin everything. All I do feels like building house after house of nothing but cards – from working to get into Oxbridge age 17, through termination of my place as a student midwife and the loss of my probation career, to my current attempts to build a “portfolio career” of research, writing, training and speaking. And so I have been asking my self: why? Why bother? Why strive to be well, comply with medication, keep a daily routine when none it stops the destruction of the things I hold dear?

In the past week I have been spending increasing amounts of time looking at pro-suicide websites – a new departure for me. In particular I was looking into the prospect of obtaining pentobarbital online. Better known as Nembutal, it is a drug I had not thought of since Sixth Form when studying Edwin Morgan’s A Poem for Marilyn which described Monroe’s death in terms of “bewildering barbiturates” and her “Nembutal bed”. It is not easy to purchase pentobarbital, however, or not at least unless you live near the Mexican border. So I read more sites, sites that tell you how to get the best results out of your overdose, how to avoid being found. And so on, and so on. Part of me was observing what I was Googling, noting the seriousness and thinking, “This is not me, I don’t do this” but another part turned its sneaky back and carried on, snarling, “Fuck off! What do you know?”

Meanwhile I continued to have intrusive visions of self-harm. I watched Tom flex his bare foot and saw my own hand slicing the soles of my feel with razor blades. Every time I raised a glass or mug to my mouth I imagined knocking my teeth out. I picked up the kitchen scissors to open a carton and had an impossible impulse to cut through my own fingers, one, two, three, four. Various items in my hand felt destined to be jabbed into my own eye: a fork, a pen, a whirring electronic toothbrush without a head. When I went for an hour’s massage, something that I usually find really helps, I was bitterly disappointed that no matter how good my body felt, my mind was calculating how many pharmacies in the borough I could reach before closing time and how much sedating medication I could get away with purchasing at each without arousing suspicion. And every day I was still having urges to make suicidal gestures likely to achieve little other than physical injury (like wanting run to open the emergency exit at the back of a double-decker bus and jump out into the path of the traffic).

I tried to explain something of this at a “medication review” with the Specialist Registrar on Thursday; I use inverted commas as all that came of that meeting was his recommendation that I try to exercise for ten minutes a day, and to write that down. Um, OK. I assume this was supposed to give me some kind of sense of hope, or control, or agency. It… didn’t. Thankfully I had a much better appointment with the SHO on Friday, who was really only meant to take bloods from me but ended up hearing that I had come to a decision. Either I had to be admitted, I told him, or I had to ask Tom to make good on his promise to take time off to look after to me. I could not look after myself any more, could not reconcile the warring parts of my brain, could not rest assured that the logical, healthier part of my brain would win out over the sneaking, suicide researching part, or over the impulsive, jumpy part. I needed to hand my care over to someone else.

Over the weekend I discussed the situation with Tom and reiterated that I could not take responsibility for myself any more, that I was too worn out and confused, and that although I had fought hospitalisation for 20 years I just didn’t care any more. I just wanted to have someone else stop me from the things I couldn’t be sure I could (would?) stop myself from doing and if took going into hospital to achieve that, then – whatever. And so he has blocked out two weeks of annual leave to be with me, monitor my med intake, watch the post and generally be a hospital at home.

I’m still going to HTT every day, only now Tom is coming with me, as well as spending all the rest of his time with me so I am never alone. Over the past week I have been trying to find out what on earth happened to the referral HTT made to the National Affective Disorders Service when I was last in crisis is April. As usual for HTT I have seen someone different every day, and this has made it very difficult to feel that the matter has been looked into. Because this referral, you see, this was supposed to give me hope back in the spring. It was supposed to help me access the crème de la crème of mood disorder treatment and just perhaps give me a more positive outlook about my future. It is therefore ironic in the extreme that I had basically lost all expectation of every hearing anything about the referral months ago, but with things as they are Tom and I felt that we really needed to get the referral back on track.

Today we saw S, one of the most dynamic and understanding nurses on the team (she even understands how important this blog is to me) and she had done what no one else would, and put in some detective work on my part. She confirmed the national service received the referral on 29th April this year, but then hit a funding wall – it’s very boring so I won’t go into it, but it’s basically because I can’t seen at my local Trust because that’s where Tom works, and this complicates things. Anyhow, the funding was last chased in August and it doesn’t look like anything has happened since then. S will keep chasing and now so will Tom.

I need this referral, I really do, but also I’m terrified that the thing I have pinned my hopes on for half of 2014 might not deliver the hope and control I need. Because right now even when I feel superficially OK, thoughts of suicide are always there. Tom asked me earlier today what he could do to help as I bent double over the kitchen counter, wracked with sobs. I know what I really want. I want him to obtain the means to help me die, and I want him to hold me in bed in a lovely hotel room under a fluffy duvet as I go. I know he won’t do that. I know it’s an impossible ask because he can’t do that without facing prosecution. But to go, and go peacefully in the arms of someone I love is what I really want.

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The slow beat of the steady drum

[TW: Self harm and suicide]

I hardly know what to say, how to articulate myself. The truth is I haven’t really been well since 1st September when I reduced my quetiapine from 600mg-500mg under Consultant supervision. It only took a couple of days to see that things were going wrong and although I put the dose up again quite soon after, the damage was done. Since then I’ve been close to crisis a couple of times and considered asking to see my psychiatrist more urgently than our planned appointment at the end of November, but on both occasions I managed to pull things back. Last Friday (9th October) I realised I couldn’t handle things myself any more and contacted my Consultant who extremely kindly fitted in a consultation with me the following Monday.

It was an odd appointment in that no matter what I said to him over the past years, none of it made him seem as concerned or as sad as what I told him on Monday. I explained that there was so much going on in my head but underneath it all was a pulsing idea, like the slow beat of a steady drum, that I don’t want to be here. People had started to ask me about Christmas but it feel remote, irrelevant, because I didn’t think I would be around. I admitted that I had been Googling possibly fatal doses of my medication (although I had already asked my partner Tom to take my meds and hide them somewhere, which he has done) and tormenting myself by looking at pictures of the Dignitas assisted-suicide clinic. I told Dr S that what I wanted was to be able to go somewhere quiet and supportive to end my life, that I did not see why because my life-long disability was mental I should have to do violence to myself to end my life, violence that would be needlessly distressing for my family and emergency services personnel. The look on his face when I said this haunts me, as does the knowledge that I had managed to make an experienced psychiatrist look so sad.

On top of this I was experiencing wild, impulsive, intrusive ideas. I am not a self-harmer yet I was plagued with impulses to cut or otherwise damage myself. I was also inexplicably drawn to doing things which felt like suicidal impulses yet would nowhere near do the job. Jumping off my balcony is a good example, I felt my body was twitching towards doing this, but what would I achieve? We’re only two floors up. Nothing would come of it other than a couple of broken legs, maybe, and a period in an orthopaedic ward. I was baffled by these urges, but did not feel safe, scared I might do something ridiculous but drastic and end up with horrible injuries and the inability to return to the work I have built up.

The inevitable questions of admission or Home Treatment Team arose. I explained that I had a problematic relationship with the HTT Consultant before because I do not feel he listens, but my own Consultant seemed more willing to intervene if that becomes a problem again. He also reminded me that the referral to the National Affective Disorders Service (made in April of this year, despite which none of us heard a word) had originated from the HTT and might be better chased within the HTT.  Admission was also mentioned in rather more concrete terms than usual, and this was not something I wanted to hear, so I agreed to return to the care of HTT.

My initial induction/assessment was with one of my favourite nurses, D, and took place the following day. On the way I picked up my meds for my physical health problems, and found myself wondering how many sedatives I could easily buy over the counter. Waiting for the bus to the hospital an ambulance screamed past me, headed for A&E and I experienced a strong impulse to leap into its path. This, I felt, was a new low for me, an act that could cause someone inside the vehicle to lose their life. Despite these ideas I felt surprised how concerned D seemed about me, because another part of me was starting to believe that I was making everything up and HTT would think I as a waste of space. Instead, I found myself having to fend off quite serious talk of admission by agreeing to daily HTT visits (last time I only had to go every other day).

HTT seems more helpful this time around in that I am so confused and desperate that the sheer fact of seeing kind people with familiar faces is helpful. The HTT Consultant’s away this week, so I saw the Registrar, who I’ve also met before. The “med review” that was undertaken was pretty unimpressive, however. I don’t know if he was unwilling to do much in the absence of his Consultant, or until the referral has been chased, but his only advice for today was to try exercising for ten minutes every day. I was supposed to have a lithium blood test too, but somehow there was no one to do it, so I have to tweak the time of my dosage for a second night and hope someone can take the blood tomorrow.

In between I am swimming in a soup of confusing, conflicting emotions and thoughts. Usually when I don’t know what mood state I am in (a situation which leaves me baffled and scared) I am in a mixed mood, so I’m going to go with that. I am still thinking about suicide. A lot. Today I should have been at the Royal College of Psychiatrist’s general adult psychiatry conference as a service user rep, but I had to give my free ticket back to Mind because I was too ill to use it. Seeing others live tweeting something I had so looked forward to attending brought home to me, immediately and painfully, how unpredictable my life is, how many disappointments and how much suffering it is charged with.

Had I had access to that box of meds I feel that this afternoon would have been extremely risky for me. I have reached a point where I don’t even know if want to get better, because what is the point? Looking at my life, it’s littered with things I tried or wanted or started to do/achieve/try. Why bother to work at getting better, when it’s inevitable that all I’ve worked towards will come crashing down again at some point? Even over the summer while my mood was stable and good, I could not let go of the feeling that it might still be better to end things, before I could relapse again.

And yet part of me still thinks I’m not really ill. I had to draw this diagram for myself just to remind me that actually there is a hell of a lot going on (I’ve never tried to make a Venn diagram of my symptoms but it actually worked really well). I don’t know how to get out of this soup. I’m taking my meds and attending my appointments like a good compliant patient. I’m using prescribed diazepam to manage things; it doesn’t stop the thoughts or the feelings, but it blunts them. Only all the time, underneath it all, I hear the steady beat of the drum.

Screen Shot 2014-10-16 at 15.13.05

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Now the party’s over: what is World Mental Health Day for, anyway?

For the mental health community, it’s The Morning After.

Those involved in the community have spent the past month pushing the mental health message. It’s been taken to political party conferences. It’s appeared on talk show sofas. 7th October marked Bipolar Awareness Day, but was quickly eclipsed by yesterday’s World Mental Health Day, 24 hours dedicated to global recognition of the mental health needs of 7 billion people. For me, today feels like getting out of bed and surveying a field after a festival, taking in the cracked plastic glasses and the spent glow sticks, while wondering: what was it all for?

According to http://www.awarenessdays.co.uk, there are about 20 awareness days/weeks in the UK in October alone, covering everything from health topics such as Breast Cancer Awareness Month and National Arthritis Week to the hipster-challenging No Beard Day (18th October, if you fancy a trip to the barber). Meanwhile National Egg Week and National Potato Week will just have to fight it out as the nation’s favourite staple, since they occupy the same section of the calendar. Given that I was oblivious to the existence of all these special days/weeks, clearly there’s a lot more to generating awareness than just designating a day. But even suppose we are conscious of an awareness day, suppose indeed that it’s hard to escape that consciousness, do we necessarily know what to do with it? Are we, indeed, supposed to do anything? Is an awareness day a call to action, a call to contemplation, a call for celebration – or something else?

World Mental Health Day has been running since 1992 and is described by the Mental Health Foundation as “the annual global celebration of mental health education, awareness and advocacy”. This is slightly different, and rather more positive, spin than the World Health Organisation’s, which describes the overall objective as “raising awareness of mental health issues around the world and mobilizing efforts in support of mental health”. WMHD always has a designated theme. In 2012, the theme was the “global crisis” of depression, last year it was the mental health of older adults, and this year the focus in on schizophrenia. WMHD has widely taken up by organisations for as long as I’ve been involved with mental health, yet this year especially I have seen many individuals who live with a mental health problem asking how meaningful WMHD is to their own lives and whether it really generates awareness among others.

I can certainly see the reasoning behind having a focal point for bringing together and celebrating good work that is done rather more quietly all year. I can also understand the impetus behind trying to connect with people who might genuinely benefit from increased knowledge about mental health issues. I was, therefore, happy to speak at a WMHD event run at Bournemouth University on Wednesday. Late adolescence and early adulthood are prime years for developing mental health conditions, including psychotic disorders (Jonny Benjamin took part in a Q&A just before my talk and shared something of what it had been like to grow up with undiagnosed schizophrenia). It seemed to me to be good and useful to try and improves students’ knowledge of mental health conditions and the services that can help them (local representatives of Mind, Rethink Mental Illness and other support organisations had stands at the university to this end).

However, I’m less comfortable with simply marking awareness such days for their own sakes. As many people observed on Twitter, they couldn’t be more aware of mental health issues, thank you very much. Those of us struggling through on a daily basis don’t need our awareness raising, nor should it be incumbent upon them to do something special or attempt to raise others’ awareness unless they particularly want to. Aside from specifically invited to take part in a WMHD event I didn’t really feel that there was anything I could or should have done differently for the cause. I was somewhat disconcerted to be sent several very well-intentioned “Happy World Mental Health Day!” tweets, as despite the MHF’s stated aims of the day I have never had a sense of there being anything celebratory about the WMHD. If anything, I have frequently heard people complain that it is depressing, focusing as it does on huge, global “disease burdens”.

In the past I have felt able to blog when the day’s special focus has touched me personally, so I wrote a post when the topic was depression. Last year I had a story to share about the mental health of a close friend in her 80s and the reflections that inspired in me about becoming an older adult with bipolar. This year however I felt that it was not for me to speak or write on the subject of schizophrenia as I don’t have enough of an immediate connection to make that subject mine to explore. Yet I saw remarkably little on the subject anyway, and what there was felt drowned out in general “awareness-raising” along the lines of “Just talk about it!”, “You’re not alone!, “Read these four amazing recovery stories” and “One in four people suffer mental illness!” This is WMHD as a free for all, where any mental health topic or story or campaign is offered up as deserving of traditional and social media attention. I was uncomfortable with the fact that aside from some strong messages from Rethink Mental Illness and some personal stories, including this excellent blog from Katie Gray, the voice of people living with schizophrenia was squeezed out by the very event that was supposed to “shine a spotlight” on their condition.

There is a personal irony amongst all this. Having delivered my talk without a hitch, and having told the audience that life was good (and meaning it), over the past couple of days I have not been very well at all and have found myself closer to crisis than in many months. And despite everything I do year round to counter the stigma and discrimination around mental health issues, I feel nothing but shame about this. I feel like a fraud, like I somehow presented myself as something that I’m not. I have found it very hard to admit that I really do need extra help and yesterday I finally forced myself to contact my psychiatrist. I have never been so aware as I was yesterday of the shame that mental distress can bring, on a day when it felt expected that I would raise the profile of mental health even higher.

This is probably heresy, but maybe we need to scale WMHD back. I think we need to strip out any component of expectation that struggling people “should do something” to raise awareness. And I believe we need to focus on the theme, so that the voices of people with marginalized conditions like dementia and schizophrenia are not further squeezed out by a cacophony of mental health messages. Because maybe the festival has become too big.

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A thousand little indignities: what it means to be “a service user”

[TWs for suicidal thoughts, suicide methods and poor mental health care experiences]

Last week a relative I haven’t seen in years watched my hypomania vlog and afterward felt moved to “give me some feedback”. I was interested in his thoughts, as I’m still very much a novice at video editing.

It turned out we were at cross-purposes: he actually wanted to offer me “feedback” on my understanding of and response to my bipolar disorder. He seemed to feel, based I think on childhood perceptions of me as “the clever one” of the family, that I was basing my management on what doctors and the authors of books had told me to do. His idea was that I should stop trying to dampen my elated feelings and borderline psychotic thoughts and enjoy and listen to them. I kept trying explain how dangerous my mood states could be for me but found the conversation more and more upsetting. I ended up saying that my three decades of living with bipolar made me more of an expert on myself and my condition than any psychiatrist could ever be, so I was certainly not going to listen to the interpretation of a “civilian”.

That’s not a word I would normally use and afterwards I wanted to explore where it had come from. Although my relative may have some mental health issues/experiences (in fact I think he may even have a form of bipolar, although seemingly a softer one) he has no clear idea of what it means to be “a service user” and how powerfully this has affected my life. It seems to me as if I have been hunkered down in the trenches, trying to survive both my condition and services that are sometimes the opposite of helpful, for all of my adult life. The advice of my relative felt like the commands of a young army officer fresh out military academy, well-meaning and with some feeling for strategy, but possessing zero combat experience.

Of course, not all service users have the same experience. For example, I have been able to stay out of hospital and will therefore never understand the experience of those who have been hospitalised, particularly those who have had multiple admissions and/or who have been involuntarily detained. Yet it feels to me that there is some sort of shared camaraderie between people who have a diagnosis of a long-term, serious mental health condition, and/or have made extensive used the mental health system, and that this is composed of having suffered a thousand little indignities perpetrated against us by the system, by society, by families and friends and workplaces, by our own brains against us, that leave us battle-hardened.

For me, being a service user means:

The indignity of powerlessness within services. The massive power differential between me and a professional with the power to detain me, even if they have no intention of doing so. Having been threatened with detention unless I displayed appropriate behaviour. Having a single professional’s scribbled notes from a twenty minute conversation carry more weight than my decades of lived experience. Having my diagnosis and treatment plan changed without telling me, never mind asking. Struggling to challenge that or to remove inaccurate details from my record.

The indignity of powerlessness over my condition. Experiencing so many episodes over such a long period that I often feel powerless to treat, contain or control my symptoms. Knowing that my experience of mental ill health will continue into the foreseeable future, that it will not “go away”, it will not be cured, and I will never completely recover. Knowing that every time I think I have understood my condition and symptoms I have been proved wrong, wrong, wrong.

The indignity of being unable to trust my own brain. Having it distort my thinking so I can see no good in myself or the world. Having it disrupt my senses so that I see and hear things more intensely or smell things that simply are not there. Having it make me behave in so many ways I would later deeply regret. Having an irrevocable gap open up between what I know to the truth and what I believe to be the truth, and feeling ashamed of this. Never knowing when it will happen again.

The indignity of reasonable behaviour or core identity issues being classified as a symptom. Knowing that becoming angry with or swearing at an uncaring and unhelpful member of staff will be seen not as an understandable reaction to being badly let down, but as “bipolar irritability” or “challenging behaviour”. Knowing that pushing for an answer where none is given risks being branded as “difficult” and “attention-seeking” and perhaps as attempting to “split” the staff group. Knowing that not being heterosexual and having moved through more than one label has been seen not as normal fluidity of human sexuality but as an “unstable sense of self”.

The indignity of poor services. Like every other service user I know I have had crass, unfeeling or otherwise unpleasant encounters with apparently uncaring psychiatric nurses, GPs, A&E staff and psychiatrists. I have been promised referrals that were never made. I have waited in crisis and not received a promised call back. I have turned up as instructed to be told that no one knows who is supposed to see me. I have waited months for an identified treatment only to be told there is ridiculous amount of time to wait or, as with my first therapy referral or my current onward referral to a tertiary service, I have just been left hanging, with not even an estimate as to how long I should expect to wait.

The indignity of medication. Side effects which continue to impact upon my work and home life and have included sedation, confusion, dizziness, insomnia, hallucinations, diarrhoea, constipation, weight gain, breast enlargement, nausea, vomiting, agitation, extreme thirst, high blood pressure, stuffy nose, agitation, mood switching from depression to hypomania. Taking months to come off one drug and cross-taper onto another. The indignity of not being allowed more than a month’s supply of anything in case I overdose, although I haven’t for years and years. The indignity of feeling like I have to beg GPs for useful drugs my consultant happily prescribes (especially benzos!).

The indignity of having to do things I don’t want to do, to try to stay well. Taking those drugs despite knowing they will make me feel awful in other ways. Going to bed early when everyone is up late. Declining social invitations or work tasks because they will impact on my mental health. Only ever being able to work part time so I have time to recuperate in my days off, and having to turn down exciting opportunities. Having to say no thanks to a second glass of wine. Having to slow things down when I long to go fast. Having resist what feels good.

The indignity of loss. Loss of educational opportunities. Loss of two beloved careers, loss of my dreams of success. Loss of income and economic independence. Loss of friendships (especially work related). Loss of my sense of the self I was when last in remission. Loss of my dreams of being the kind of mother I wanted to be, and loss of my ability to care for my children full time. The indignity of losing a relationship of equals with my partner when he has had to become my “carer” rather than my lover.

The indignity of stigma. The knowledge that even accessing community services may raise an eyebrow at work, at parties, at family gatherings, or even in other health service contexts. Taking drugs that are negatively labelled by others, seen as “happy pills” by one group and a “chemical cosh” by another. Cringing at lurid headlines that scream, “mental patient” in connection with violence. Reading surveys that suggest a sizeable minority of people do not want people like me to live next door to them, work with them or look after their children.

The indignity of opinionated ignorance. Sadly this applies to both “civilians” and those trained to care for us. Being told that I should be happy, that I should revise my expectations in not wanting to suffer, being told that everyone suffers and I am not special. Being told that bipolars don’t experience emotions any differently to anyone else but simply lack coping skills. Being told that my suffering is “feeling sorry for myself”. Being told that I should be better now because I am, “in treatment”, “on meds”, “in therapy”. Having my physical symptoms ignored by secondary services and my mental health symptoms treated as scary by primary care.

The indignity of being disapproved of. Disapproval of my coping strategies even though they are all quite legal. Disapproval of my overeating, my overwork, my overspending, my oversleeping. Disapproval of my choice to take medication at times. Disapproval of my choice not to take medication at times. Disapproval by some of use of services at all. Disapproval of acts carried out or things said when depressed, when manic or hypomanic, when in a state of panic, when delusional. Disapproval of having suicidal thoughts when I am young, have kids, have a lovely partner. Feeling subject to disapproval for “failing to respond” to a drug or a therapy that is successful in others.

The indignity of wanting to die. Not having fleeting thoughts, not now and then wondering if I might be better off (or those around me might be) if I were dead. Not simply wanting everything to stop or wanting to go to sleep and not wake up again. Genuinely wanting to die and being reduced to an inability to think of anything else, feeling that I am being kept here on this plane against my will. Spending all day every day evaluating and re-evaluating methods and timings. Running through the methods that make sense to me. Standing, watching tube trains pull into the station and wondering if I should jump now, or now, or now. Avoiding the kitchen because I know I can’t trust myself around knives, avoiding the bathroom because I can’t trust yourself around the medicine cabinet. Looking up at a skyscraper and wishing I could get up there to jump. Wishing on a star to be gifted with a heart attack, a fatal stroke, a blood clot in my brain. Thinking about my will. Tidying up my finances. Thinking about writing down my Twitter password so that my partner can let my online friends know what has happened to me. Planning my funeral.

The indignity of emergency treatment. Having to give up and admit I cannot keep myself safe. Grovelling on the floor of an A&E cubicle puking up charcoal. Being tethered to the bed by an antidote IV, a young and otherwise healthy woman in a medical ward full of older people who are genuinely sick. Having to tell my suicidal feelings to a stranger who is not really listening. Having to wait for hours to see the duty psychiatrist in a foyer with a permanently open door on a freezing November. Being assessed in a few minutes and handed a bottle of antipsychotics and being sent home under the care of my partner. Again and again.

And so I am glad for my relative if he has never experienced any of those things, or only one of two of them, rather than the whole menu. I have suffered enough; I would not for the world want him to have spent twenty or thirty years suffering these pangs of indignity. But I reserve the right not to be judged or advised by those who have never seen the trenches.

Posted in Activism, Mental health, Mental health services, Stigma and discrimination | Tagged , , , , , , , , , , , , | 63 Comments

NEW VLOG! “Like the difference between eating a biscuit and a delicious gateau.”

People often asked me how I know when I am hypomanic. How do I distinguish between normal happiness and something more pathological? It can be a difficult question to answer, especially as everyone’s experience will be a little different.

Last Friday I was feeling very hypomanic, so I recorded my thoughts….

Posted in Mental health | Tagged , , , , , , , , , , | 8 Comments

There are worse things I could do…

There are worse things I could do
Than to gain a stone or two,
Though I know it’s likely more
To be three, or maybe four
There is one thing that is true:
There are worst things I could do.

I could ditch those pesky meds
Leave my mental health in shreds,
So what’s sitting on my plate
Will not cause excessive weight.
But you know, I’ve thought it through,
And that’s a thing I just won’t do.

I could find some other way
Of surviving every day.
I could drink or I could steal,
Find some new way not to feel,
But if food can get me through
Then what the hell is that to you?

[saxophone break]

I could count each calorie
Hoping that will set me free,
Let my bathroom scales decide
If I dare to go outside,
Hiding from the likes of you.
But that’s not something I will do.

I could scorn someone like me,
Make my loathing plain to see,
Say she has to learn that fat
Isn’t pretty to look at
And offends the public view,
But that’s a thing I’d never do.

You may want me to oblige,
Hate myself over my size,
Agree that I have no self-worth
With this cup size and this girth,
But I’ve learned that isn’t true.
There are much worse things I could do.

Posted in Uncategorized | Tagged , , , , , | 17 Comments