Complaint to the Samaritans re: Radar app

FAO Chief Executive, The Samaritans.

Re: Radar app.

I wish to complain about the disastrous implementation of the Samaritans Radar app this week. The nature of my complaint is threefold.

Firstly, you launched a risky and invasive app upon an unsuspecting Twitter mental health community without warning. You say you consulted with potential users in development and tested the app extensively, yet you clearly did not consult the thousands of Twitter members who regularly tweet about mental health issues. I am a vocal and longstanding member of that community yet neither nor anyone else I follow had heard of the app until its launch.

Had you consulted with your target audience, you would have quickly learned why the Radar is both flawed and risky. It operates on the assumption that people in connection with one another on Twitter are “friends”. This may be somewhat more true of Facebook, where for example I have around 200 “friends” almost all of whom I know in some capacity in real life. It most certainly is not true of Twitter, where I have approaching 8000 followers. How on earth could I have a relationship with anything but a fraction of this number? Some followers are interested in my work in mental health, some presumably follow for more personal reasons but it is impossible for me to know since I cannot interact with the majority.

I do however know that there is a minority who follow me because they dislike me and want to keep an eye on what I am doing – this is a pitfall of being so very public about my mental health. Yet even with a currently locked account, unless I explicitly opt out, you offered via Radar assistance to anyone at all among the 8000 to monitor my distress levels covertly. This means your later advice to make accounts private is hardly any help unless you have so few followers you know them all personally. It is also frankly insulting; it’s pretty much like telling people that if they don’t want strangers peering through their window they should keep their blinds shut 24/7.

As someone with bipolar disorder I am frequently suicidal, and often talk about it on Twitter. It’s a place I can express myself without worrying that I will upset relatives, where I can say the unsayable because other people understand. How on earth do you think it helps me to feel potentially spied upon during those conversations? How on earth do you think it helps me to give my trolls a heads up that I am vulnerable, so that they can relish attacking me when I am down? How on earth does it help anyone when talking about suicide in a theoretical, policy or academic sense, as many mental health activists do, rings “false positive” alarm bells?

Please don’t tell me that I am wrong about any of this; I may be 40 years old but have used the internet for mental heath support longer than your target “digital natives” have been alive and have used social media far longer than my children and stepchildren, who are in their teens and twenties. In addition I speak at conferences about act as a consultant on the use of social media for online mental health peer support networks.

My second concern is that this should have been perpetrated against the mental health community by an organisation that community trusted. Why did people (and this includes me, as a sometime user of your services) trust you? Because we knew that unlike our dealings with the NHS, you were never monitoring/assessing our risk and passing that risk information to a third party. You were just there for us. And so you launch an app that monitors us and passes the information to a third party? This feels like a sick joke, a perversion of the trusted relationship The Samaritans has built up with the mental health community over decades.

My final point concerns your organisation’s handling of the Twitter mental health community’s overwhelmingly negative response to Radar. I appreciate your digital comms team must have been overwhelmed with tweets – I was certainly deluged by people telling me how distressed they were, how frightened they were, how Orwellian the whole thing seemed. I had to watch distressed friends go into a complete panic as they feared Twitter, often their one authentic space to talk about issues like suicidal ideation, was no longer safe. I saw people leave Twitter, immediately, possibly never to return. I saw people close down fruitful, supportive accounts and create brand new locked ones, beginning a laborious process of trying to recreate their safe space all over again where Radar could not get at them. I saw people say that they could now never speak openly on Twitter about their suicidal thoughts again. I saw victims of abuse and stalking terrified that their abusers would sign up to monitor them and exploit their vulnerability.

Your comms team must have seen that distress. They must, surely, have read at least some of the numerous blogs which popped up exploring the ethical, legal and emotional ramifications of Radar. One prominent member of the community, who is also a mental health professional, went so far as to tweet you her fears that we were witnessing “the death of the Twitter mental health community”. And as an organisation you must have accepted some of our points, because you responded with the opt-out so-called “whitelist” (although you took 15 hours to respond to this request in my case). This was a big step forward, but will of course do no good at all to Twitter members who have not heard about Radar and so do not know they could be monitored, or who do not know how to opt-out.

But what has been conspicuously absent from your cut-and-paste Twitter and email responses? One important word: sorry. You, a large, respected and established mental health charity, have this week caused huge distress, fear and anger among the very people you purport to want to help. The great irony is that had you launched Radar as an opt-IN service, many of the people who were so deeply troubled by its current form would have welcomed nominating selected friends to keep an eye on them. Instead, you used us as experimental subjects for your tech, crowed about its “reach” after a day your subjects had found traumatic, and have expressed no regret to the damage you caused. We in the mental health community have learned to expect this kind of shabby treatment from the organisation like Asda or Thorpe Park, who care very little about the effect of their actions on us. To receive it from an organisation that exists supposedly to support us? Heartbreaking.

I look forward to your comments, and most specifically your apology, which I will be more than happy to share via Twitter and my blog.

Yours sincerely,

Charlotte Walker

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Mr Sam and his magical radar booth

Suppose you find a cafe where lots of people with mental health problems hang out. Some of them go off into private nooks, but the majority sit round tables. They’re out in the open area with their cappuccinos and chai lattes, so technically anyone could overhear if they chose, but to all intents and purposes they are having frank, semi-private chats. One of the things they talk about openly, for mutual support, is their experience of suicidal feelings. Thoughts of suicide are common in the general population but disclosure can often be met with shock or inappropriate action like an unnecessary 999 call, so people like the cafe’s feeling of safety and freedom. Part of its charm is being a space away from family, colleagues and everyday friends who often wouldn’t understand.

Then one day a Mr Sam turns up. Mr Sam is a bit of an expert on suicide; he’s spent his life training others to give comfort and support to the suicidal via phone, text and email. Only Mr Sam, he’s not comfortable with the cafe. He’s anxious that people might be talking to each other about suicide while their nearest and dearest who don’t frequent the cafe much, and the nice doctors and nurses who just want to help, might never know.

Troubled by this, he sets up a booth at the cafe door offering a brand new service. Anyone approaching the booth can point out people they have an interest in. Mr Sam will then put a tiny microphone on the Subject, and if they start talking openly about suicide Mr Sam will gather the data and phone it through to the Interested Party. Obviously as it’s an open cafe the Interested Party could just hang around in the cafe or pop in from time to time, or even ask the Subject how they’re doing, but Mr Sam wants to make it easier for vulnerable people to be watched. For their own good.

Having set up his booth, Mr Sam gets up on a box and addresses the cafe, explaining the virtues of his scheme and letting everyone know that he has also notified the media of his wonderful new idea.

Mr Sam then finds himself deluged with questions.

Q Will Mr Sam tell the Subject he’s putting a mic on them?
A Nope, he’ll do it in secret, because it’s for their own good.

Q Will Mr Sam tell the Subject they are apparently a matter of concern to any Interested Party?
A No, because it’s for their own good.

Q Will Mr Sam notify the Subject that he’s collecting and phoning through data about them?
A No.

Q Will Mr Sam ask the Interested Party what business they have listening in to the Subject?
A No.

Q So they could be someone who wishes the Subject harm and enjoys knowing they’re in crisis? A bully or an internet troll?
A Yes.

Q So they could be a nosy family member that the Subject is really not keen on talking to about their mental health?
A Yes.

Q So they could be a stalker or abusive partner who could exploit the Subject’s suicidality to frighten them more or insinuate themselves back into their lives?
A Yes.

Q So they could be a journalist?
A Yes.

Mr Sam sets up his magical booth on Wednesday. All day people approach him outlining their discomfort, unhappiness and downright fear of his helpful scheme. People quickly produce pamphlets about how Orwellian Mr Sam’s idea seems, how unsafe they feel, how the scheme may even be illegal.

By Thursday, the café’s already a little quieter. Some mental health folk have gone into private rooms and locked the doors. Some have gone home to mull over whether they can ever feel safe in the cafe again; some have already left for good. Some are still sipping their coffee but are subdued, quiet, avoiding talking about their true feelings because they don’t know who might be listening.

In the interim, Mr Sam’s made a video explaining what a great idea his booth is and how pleased he is with its “reach”. And I’m left wondering if the cafe can ever be safe and vibrant again.

Posted in Activism, Mental health, Stigma and discrimination | Tagged , , , | 15 Comments

Six degrees of platitude: on “inspirational” quotes

I often wonder if the developers of Facebook and Twitter ever foresaw just how much of their traffic would be made up of inspirational quotes. Day in day out, social media users are bombarded with quotes attributed to the Dalai Lama, twelve step recovery aphorisms and ersatz Native American wisdom. Of course there’s a special market in mental health maxims about how we are strong at our broken places, about how the darkest hour is always before the dawn, about how pain is going to teach us patience. I know from Twitter conversations that I’m not alone in finding many of these little bundles of advice irksome rather than supportive but now I’m in crisis I’m finding them unbearably trite. There are so many I could have chosen, but since I imagine you’ve better things to do that read a dissertation on inspiration, here are my top peeves.

1) This too shall pass. Well, yeah, because like everything passes, you know? WWI passed, it’s just that an estimated 10 million soldiers and a further seven million ordinary civilians died in the process. And then of course in case you were thinking that this was one of those dark, dark hours before the dawn, in 1918 possibly as many as 100 million people – five per cent of the global population – died from Spanish flu. Of course my days pass, my weeks pass, my episodes pass, but not without untold trauma. I might survive a very, very bad bit, yet my 29 years of living with bipolar teach me that there may still be worse to come. So unless you can tell me when my pain will ease, and for how long, I’m not tremendously interested.

2) We all have mental health. I get where this is coming from. I really do. We don’t want the general population to think that there are two groups of people, nice “us” over here with normal brains and then “them!” over there, another, much more sinister group of people with mental health difficulties. And I know many consider it problematic that “mental health” has actually become shorthand for “mental illness” (as in “mental health services” that only treat mental ill-health). But I have major, major issues with this phrase because there is an implication that if “we all have mental health”, if we are all “on the spectrum”, then all points on the spectrum are equal. Stress is as important as schizophrenia. Exam anxiety is as deserving of attention as eating disorders. In an attempt not to exclude, we gloss over the massive differences in diagnosis, duration and severity. It would seem disrespectful in the extreme for the physically well to assert that “we all have physical health” to patients whose physical wellbeing is so compromised by organ failure, by cancer, by motor neurone disease. Yes, they all have a degree of physical health, but it is so diminished that they have vastly reduced quality of life. So why do we not extend this same respect to people with severe and enduring mental health conditions?

3) You are more than your illness. Well, you see, this relates to point two. Someone with a mild condition may well feel that their condition is just one aspect of their life and identity. But me? Well, I am not more than my illness, actually. My condition and I are so intertwined I literally have no idea where it ends and I begin. My personality has been shaped by living with bipolar symptoms throughout my childhood and adolescence; I just don’t know who I am without it. And now that I am in crisis again there is nothing to me but my bipolar. My thoughts are consumed by it. My emotions are dominated by it. It dictates what I can and can’t do. I am it. It is me. Please don’t tell me otherwise.

4) No one can make you feel inferior without your consent. This line is generally attributed to Eleanor Roosevelt around 1935. Interestingly there seems to be little evidence of this being a direct quote (the Quote Investigator site suggests a possible origin) but I’m going to deal with the phrase as it’s generally circulated. It certainly seems a rather glib statement for someone born into a family of wealthy New York fin de siècle socialites and politicians, including the serving President, who went to finishing school in Europe, was then presented as a debutante at the Waldorf-Astoria and eventually became First Lady. Given her life, I’m going to take a wild guess here that Eleanor was in few situations where she was required to “withhold her consent” to being oppressed (unlike, for example, those across the Atlantic at the time who were presumably displaying their active consent to being thrown into the first concentration camps). What this quote is saying is that systems and services can only be oppressive if you allow them to oppress you. Society can only stigmatise you if you consent to being stigmatised. It is a denial of power structures that suggests that part of your suffering is your own fault – ironically, a message which is likely to make you feel pretty inferior for feeling inferior.

5) It’s OK not to be OK. Well, you see, that depends on what “not OK” means to someone. Context is everything. It strikes me as phrase very much geared to the less serious end of the mental health spectrum, where it may have considerable merit. Telling someone who is becoming depressed, becoming anxious or stressed, perhaps developing insomnia, that it is OK to admit to not being OK, that it is OK to take time out and regain equilibrium is a really useful preventative measure. However, when I say that I am “not OK” I am starting from a position of having a serious, lifelong, incurable mental illness. My “not OK” is shorthand for being suicidal, sometimes in agitated way, sometimes as a result of a deep depression. My “not OK” may mean having frightening delusional beliefs. My “not OK” usually means losing my ability to work, losing my ability to parent. It means resorting to ever higher doses of drugs to retain a tenuous hold on what it means to be human. And that is not OK with me. OK?

6) Illness is not a choice – recovery is. This is a particularly irritating meme that has been doing the rounds lately and appears to suggest there are two states of being in mental health: illness (BAD and NOT A CHOICE) and recovery (GOOD and A CHOICE). You have no power over whether you are ill, but you have power over whether you are well. There are so many incorrect assumptions in this, I hardly know where to start, but you know me, I’ll have a go.

  • Firstly, yes illness can just strike out of the blue, but actually there are all kinds of behaviours a person might indulge in which can lead to illness or relapse (for people like me with bipolar that might include not sleeping, not taking prescribed meds, drinking too much, socialising too much and so forth). Sometimes I am just a victim of “illness” as this quote suggests; sometimes it’s the result of bad choices I made.
  • Recovery is not a “state of being” you can choose to enter into. It is a process, and one which has become central to mental health discourse and treatment. There are many people who do not wish to participate in this process of “recovery” for a variety of reasons. They may not trust services. There may not be any effective services in their area. They may have tried everything on offer with no beneficial effect. They may disagree with the medical profession that there is anything “wrong” with them. They may feel that the recovery model itself is offensive with its emphasis on “functionality” and economic output. That is their choice. But it is a model or a process they are rejecting, not a state of being.
  • Likewise, those who like me choose to work with services, the best that can be done is to participate in a process. I don’t get to choose to be in a state of “recovery” and – well, um, if I could just do that, wouldn’t the profession of psychiatry and the pharmaceutical industry disappear?

I understand the sentiment behind “inspiration”. Humans like to try to comfort other humans, to give them a degree of hope and a reason to survive. That’s a laudable aim. But surely we can do better than platitudes?

Posted in Mental health | Tagged , , , , , , , | 14 Comments

What have I done?

***MORE BIG TRIGGER WARNINGS FOR SUICIDE, INCLUDING METHODS***

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?

Posted in Mental health, Mental health services | Tagged , , , , , , , , , , , | 22 Comments

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.

Posted in Mental health, Politics and current affairs | Tagged , , , , , , , , , , , , , , , , | 17 Comments

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.

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Posted in Mental health, Mental health services | Tagged , , , , , , , , , | 17 Comments

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.

Posted in Activism, Mental health, Politics and current affairs | Tagged , , , , , , , | 10 Comments