22 Oct

The back story

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Marion-Janner-and-assista-001

Marion Janner and Buddy

 

 

Apart from a miserable time at university accompanied by a mild clinical depression, I’ve been exuberantly happy all my life. My adult life in particular was blissful, largely thanks to a joyous relationship with my partner Sylvia, a fabulous foster son, deeply satisfying work, wonderful friends… you get the picture. So this crying episode was very puzzling but I put it down to a quirky aberration. But when a similarly insignificant trigger (which I can’t even remember) resulted in tears which I couldn’t stem for over an hour, I started to think something worrying was going on.

I’d recently changed jobs, having closed the (anti) prison project, Payback, which I’d run as a short-term campaign for 4 years. The closure was absolutely planned for and felt right, and I was really excited about setting up a new charity — Bright. It had the rather woolly (as in fluffy, vague and liberal — but also comforting and feel-good) intention of making the world happier, friendlier, safer etc. (Hmm. It already starts to be a bit clearer how such a ridiculous concept could lead to a chain of emotional events culminating in sectioning.) Bright’s trustees were enthusiastic, supportive and challenging, helping me to focus properly on realistic projects and a coherent over-arching mission for the organisation. The Charity Commission were unenthusiastic, dismissive and bureaucratic.

Finally, with the help of a specialist charity lawyer, we all managed to work out an acceptable rationale and legal structure. I began to work on the two projects — the first designed to harness people’s everyday actions to make the world a better place (a concept very like the excellent www.wearewhatwedo.org). And a second to introduce more laughter and joy into the lives of people with profound and multiple disabilities.

A strange thing happened. I was generally fine and enjoying myself but if one narrow, specific strand of conversation or even thought came up, I’d cry. The theme was about Bright being unsuccessful, especially at getting funding to get the projects off the ground. The reflex emotional outpouring became very problematic, as it meant crucial conversations became off-limits. It really got to a crunch when I was with two trustees, trying to plan a committee meeting and I explained that I was having this incomprehensible response to one aspect of Bright’s planning. My trustees, who were also good mates of mine, tried to persuade me to postpone the meeting. I explained that I’d be fine — as long as no-one used a sentence including the word “you”. We postponed the meeting.

My concerns about Bright soon slid into a strong anxiety about my professional competence. I was feeling that classic depression symptom of worthless. And the tripping-up strand was fortified daily. Having tried all the usual, sensible ways of trying to avert being distressed, I discovered an extraordinary method. I’ve no idea where the concept came from, but I found that if I thought about self-harming, I didn’t cry. As simple, and problematic, as that. And 100% effective. It felt absolutely magical, and meant that I was suddenly able to have uncensored conversations about work.

For six weeks, just imagining self-harming was sufficient. But perhaps predictably, one day I could no longer constrain the fantasy and I cut myself. The effect was astonishing but as I wouldn’t want in even the most minor way to motivate anyone to do similarly, I’ll omit the details. I told one friend, Karen, about this, and she said I had to tell Sylvia, so I did. I’ll conflate her response into a brief summary of the rest of that year.

Friends became increasingly insistent that I go on anti-depressants. I was vigorously opposed to any medical intervention but finally submitted and went to the GP. I’d never met Dr Gallagher before and certainly had no intention of telling her about the self-harming. I told her within the first two minutes. As soon as I was with her she was incredibly understanding and the very opposite of my stereotype of doctors only too quick to dish out pills as The Solution to depression, and it felt very safe to give her the full story. And so began my devotion to anti-depressants — and to my GPs. I was lucky only to have a few days rather than weeks of grim emotional adjustment to the drugs and by the end of the week some of the toughest manifestations of my depression were blessedly muted.

The rest of the year saw the involvement of a wonderful therapist, Heather, a private sector psychiatrist and the compounding misery of seeing how distressing my depression and self-harming were for Sylvia. We’d had 19 ridiculously, unswervingly happy years together. I could never join in the conversations about “every relationship has its ups and downs” because ours only had the former. This was probably partly thanks to us leading relatively independent lives to each other, for instance having mainly separate sets of friends. During the year Sylvia continued what I’d started to refer to as her “affair” with tennis. She’d play it every possible moment and in every condition; she once spent an hour shovelling snow off the court so that she could play. And when she wasn’t playing, she’d be watching it on TV.

On March 11th we had a ‘commitment ceremony’, the partnership registration scheme which preceded the new civil partnerships law. And in the evening we had a 20th anniversary party at my friend Ruth’s house. A month later we were off on our usual Good Friday journey down to Sylvia’s parents in Cornwall, but this time with the delightful addition of my new puppy, Buddy. We schmoozed about this and that, and slogged through the traffic til we got to Stonehenge. Sylvia then told me that she probably wanted to leave me.

People of course ask me why Sylvia left me and until recently I’ve just feebly said that I don’t really know. She said she wanted a change and probably to have a relationship with a man. The nearest she got to an explanation was that “It’s like having rich chocolate truffles for years and then wanting spinach.” I’m a chocolate enthusiast, and ran a spectacularly unsuccessful chocolate business for a necessarily brief time. But even so, it wasn’t exactly enough to explain this extraordinary situation, especially coming immediately after our commitment ceremony.

I now realise that there’s a simple explanation for what happened. Sylvia fell out of love with me. And her affair with tennis was part of a subtler process of distancing herself from me. In this vacuum, my depression took root and swelled.

Two months later I was in The Priory, and Sylvia moved out. I spent a month there taking part in the undemanding (and remarkably ineffectual) group sessions, but also benefiting from a week on the Addiction Treatment Programme as I was felt to be addicted to self-harming. The ATP was much more structured, rigorous and mutually supportive than what patients downstairs at The Priory got and enabled me to understand some of the processes of an addictive, damaging behaviour. But not sufficiently to stop me self-harming while there and I spent a total of 16 days on ’special observation’, with a member of staff watching me 24 hours a day. Including all through my sound nights’ sleep. Like some other patients who self-harm in hospital, part of the dynamic of being so closely controlled is to ratchet up the desire to self-harm and I found ways of doing so even while being ’specialed’.

Friends and family continued to be fantastically supportive, visiting me daily, sending cards and flowers and reassuring me about my ability to cope, with their help, once I got back home. And Heather, my therapist, came in once a week and we had a second session on the phone. Amazingly in a hospital which apparently charges uninsured patients #6,000 a week, this was the only individual psychotherapy I had at The Priory.

Being back home was devastating. And the rest of the year was a real struggle. But friends were even more supportive than I’d anticipated and this, Heather, my new GP Dr Christian (Dr Gallagher had gone abroad to live), the drugs and Buddy kept me just about afloat. I also began working three days a week on a stimulating, challenging but manageable learning disability project at the charity Mental Health Media. This structure, satisfaction and weekday companionship provided all the things that mental health professionals tell you that work contributes. And an income! A crucial factor given that Sylvia had been the high-flying, high-earning one of us.

My father has been wonderfully supportive through my depression and the two things which I’ve particularly appreciated were firstly him agreeing not to come in to see me for the first 10 days when I was in hospital — an almost impossible achievement for an adoring Jewish father. And he has totally bailed me out financially, including paying Sylvia for her half of the value of our house so that I’ve been able to continue living here.

Despite the obvious distressing aspects of living without Sylvia in a house where we’d been so happy together, the alternative was much worse, as it’s a great house, with a beautiful, quirky garden which Sylvia created, backing onto a park. And I’ve got friends in the street. And Buddy has her much loved ‘foster parents’ here — Lorna and Ron who she stays with, along with their border collie, during the day when I’m at work. (The wonderful Lorna and Ron simply took Buddy into their home for the 4 weeks when I was in hospital, which was a huge relief.)

My self-harming that year diversified into a more harmful method during those periods when I was feeling particularly unable to cope. It’s both a truism and a paradox that self-harming is a coping mechanism. Doing something which exemplifies being out of control is a way for some of us to feel in control.

By the time that the first anniversary of what I inevitably refer to as Bad Friday approached, Heather and my Priory psychiatrist, Bron, were sufficiently concerned about my safety to contact my GP to get me sectioned. Dr Christian had previously arranged for me to be supported at times in the local crisis hostel and also by the home crisis team. But these were felt to be no longer enough. Bron wrote to Dr Christian, in a letter that a member of hospital staff subsequently helpfully copied for me, in a helpful but no doubt totally unauthorised way. He said: “Heather S[] and I now believe that without intervention, the risk of her killing herself in the week prior to Easter is extremely high.”

That’s how I ended up a few days before Easter, balancing Buddy on my lap in the kitchen, with Dr Christian and four mental health professionals sitting around the table discussing my fate with me. They couldn’t have been more considerate and I certainly felt that my views were being carefully listened to and weighed up alongside Heather and Bron’s wish for me to be sectioned. The feeling of a ‘fair process’ was detonated, however, when in the middle of the discussion and before the professionals had conferred, the doorbell rang and there on my doorstep were two ambulance men. And a huge ambulance. It felt like that hideous caricature of ‘the men in white coats’, only theirs were green outfits. And that the whole process of meticulously deciding what to do was a charade. Despite this, I continued throughout to trust Dr Christian, his integrity and his undiluted concern for what was best for me. (He put his hand on my shoulder in a supportive gesture as I was being led out and despite explosive and excruciating emotions, I did feel comforted and supported by this.)

Anyway. I was duly sectioned. I was absolutely terrified about being on a locked ward, and again in the absence of any more informed concept of what a psychiatric hospital is like, the vacuum was horrifyingly filled by One Flew Over the Cuckoo’s Nest fears and images. But like all the other ambulance staff who have patiently, non-judgmentally and supportively ferried me to A&E on my various trips, the crew were reassuring. Well, they said reassuring things which I totally didn’t believe.

One of my strong memories of that hideous day is that one of the ambulance crew carried my little suitcase as we went up to ward P1 at St Ann’s in Tottenham. It felt very caring, courteous and incongruous, as if I had a posh doorman escorting me to some grand country mansion.

For the first two days in the hospital I was raging, sulky, unco-operative and generally a complete pain in the arse. I refused even to discuss the possibility of a change in my medication as I knew this was all part of the Nurse Ratched type conspiracy. But the staff weren’t easily provoked and retained a very mellow, constructive and professional response to me. I remember the moment when it all changed. I was kvetching (complaining) to myself about how this was a very dangerous place to be, conveniently ignoring the instant impression I’d got when I’d entered the ward, of a light, clean, unsmelly, calm, pleasant environment. I reviewed the kvetch and could no longer sustain the dissonance between my expectation and my experience. I had to recognise that, on the contrary, the ward felt safe. And that the locked door actually contributed to my feeling of safety!

This revelation propelled me to the phone to ring Heather, Bron and Dr Christian to say that they’d been right. I had needed to be sectioned and was grateful to be at St Ann’s.

Right through my depression, it’s been a constant battle between the self-harming and self-protective parts of myself. From that moment of epiphany about the ward’s safeness, the self-protective side was deeply, profoundly relieved that I no longer had to struggle to suppress my self-destructive urges. It was being done for me. There were impregnable external controls. All I had to do was submit to the incontrovertibly benign regime and I’d be okay. Not great because the trauma of the anniversary was very acute. But at least able to have a respite from my inner wrangling. (During the sectioning assessment, Dr Christian had said he felt what I needed was ’sanctuary’. As with so much else, he was right.) The bonus was some exceptionally astute and supportive staff to talk with (Claire the ward manager, and Linda and Alison the two staff nurses) and two fellow patients who were very very funny and great company. More visits from friends and family, and from a smuggled in Buddy, three excellent meals a day, the occasional art session and a month of reading The Number One Ladies Detective Agency series. (I read very slowly in hospital.)

So my time at St Ann’s ended up being very therapeutic and I emerged a month later in a much safer state. My consultant, Dr Isaacs, had treated me like a competent adult, accepting my word when I said I’d stop self-harming while on the ward, and instantly ending the imposition of 24 hour special observation which, like at The Priory, had been felt to be necessary. (And again like my previous hospitalisation, I’d continued to self-harm even when being specialed.) I was even allowed to determine when my (28 day) section could be lifted. To my surprise, I found that I didn’t want it immediately rescinded, that it gave me a certain sense of security. We agreed to lift it on a day the following week, as part of the planned process of my starting to go home gradually.

Two very good things emerged from my being at St Ann’s. The first was that the heroic Prof Anthony Bateman took me on as an individual patient for weekly psychotherapy, at [St Ann’s Halliwick Centre-http://www.psychol.ucl.ac.uk/psychoanalysis/anthony.htm] which he manages. Secondly, it inspired me to set up the Star Wards project.

So that’s the backstory.

And if you’ve still got some energy for even more gory psychiatric details, you’re very welcome to read on to find out why borderline personality disorder isn’t a borderline personality disorder and why it turns out that I’ve got it.

My preference is to be in the centre of things, preferably with my dog, but I’ve recently discovered that I’m a borderline borderline. Sadly not as in Hampstead borders; I’m straddling the threshold of the mental health world’s Grimethorpe as someone with definite ‘borderline personality disorder’ (BPD) tendencies. Borderline is a mysterious moniker — is the threshold between sanity and insanity? Criminality and law-lovingness? Being endowed with a personality or having an amoeba-esque character? It turns out that those of us with BPD are tottering on the brink of psychosis.

For months I’ve been treated in not any old personality disorder service but a Beacon (i.e. officially top-notch) one, and by Prof Anthony Bateman, a psychiatrist who is one of the superstars of the personality disorders’ field. But through a combination of my misunderstanding the diagnosis and heroic non-labelling by Prof Bateman, it is only recently that I’ve twigged that I meet the criteria for BPD. That I potentially have a BPD diagnosis. That, deep breath, I could be said to have BPD. The professionals working with me have been amazingly consistent in treating me for the symptoms but not employing the label of BPD. There’s not even a hint of it in my medical records.

Which is, of course, a good thing given how stigmatised the condition is. I find it very difficult to identify with having BPD. Mental illness — unquestionably. Self-harming — equally clear. Added to these, I wrestle with short-lived bursts of extreme anger, of intense depression and have also had one episode of ’severe dissociation’ — feeling there were external forces compelling me to kill myself. This package places me on the threshold of the condition, and as I have splashes of most of the other qualifying factors, I’m nudged over the edge. I am, however, very lucky to be wonderfully supported with all this difficult stuff by a strong circle of friends and family. These long-standing, stable relationships are the opposite of one of the qualifying BPD conditions — mercurial and generally short-lived relationships.

As with many other ugly or scary diagnoses, it in some ways helps to at least have a name and shape to what one is dealing with. I can read up on the condition and understand the rationale behind my treatment. But I was pretty nervous while investigating my relationship to BPD. Going through the qualifying conditions is rather like the opposite of watching your numbers come up in the lottery. One BPD condition match — “Hmm. Fair enough.” Two — “That’s strange.” The third match and things are looking decidedly unfavourable, as I’m already more than half-way to meeting the necessary score of at least 5 out of the 9 conditions. At four it’s “shit shit shit” but it’s the 5th one that’s the real downer. The anti-thunderball. And a trigger for reviewing the first 4: I haven’t really got/done/been that, or at least not very often, not noticeably…..

To confuse the issue, the above entrance quiz is only the American one, enshrined in their Diagnostic and Statistical Manual of Mental Disorders — DSM IV. The European version is enough to drive the most zealous Europhile into the arms of some zany, short-lived counter-Brussels political party. It must have been devised by someone inspired by proportional representation’s tortuous process of single transferable votes, overhang seats (sic) and decoy lists.

With the European Game of Guess Your BPD Status, you have to have at least three of the first five ‘impulsive’ tendencies, of which one must be their number two. (Yes. They eschew the more obvious choice of number 1 as the key factor.) Appropriately, number 2 is a ‘marked tendency to quarrelsome behaviour bla bla’, which is clearly the state we’ll have reached even before getting to the second half of the equation. Part two is to have at least a couple of the next five rather sad ‘borderline’ criteria. You then take away the symptom you first thought of, run the results through your BPD detection software and voila.

Having recognised that I’ve sort of got BPD, I’ve become interested in contributing to the efforts of my doctors by doing some doctoring of my own. Spin-doctoring. Starting with the bloody name. And yes, while we Brits use the American name, there is a different European one. It’s not any more flattering but it is a bit more explicit: Emotionally Unstable Personality Disorder (Borderline Type). There are gentle efforts in America to have it renamed ‘Emotion-Impulse Regulation Disorder’ which constructively removes the ‘personality’ element and adds the issue of mood regulation difficulties. The risk with this name is that women with the condition will be abbreviated to WEIRD.

A PR make-over for the 9 qualifying (American) conditions would have the following conversions:

  • ‘frantic efforts to avoid abandonment’ becomes ‘enthusiastic about other people remaining in their lives’, while the then paradoxical
  • ‘pattern of unstable and intense interpersonal relationships’ becomes ‘not clinging excessively to people we’re close to’.
  • We’re no longer hopelessly ‘impulsive’ but impressively ’spontaneous’ and similarly rather than
  • ‘identity disturbance’ we are ‘flexible’ in how we see ourselves. All this is likely to lead to
  • ‘affective instability’ i.e. mood swings which are better seen as ’short-lived differences in mood’. A way of coping with these 5 is:
  • ’severe dissociation’ which could be rebranded as a spiritual state of spacing out

The make-over would admittedly then run aground against the rocks of

  • intense anger
  • chronic emptiness and
  • suicidal or self-mutilating behaviour.

 

Not even Trinny and Susanna could soften the blow of these last three. And talking of girlyness, BPD is a diagnosis used disproportionately with women, while men get the parallel, but even more stigmatising, anti-social personality disorder. Now that’s really having the odds stacked against you.

As long as we’re stuck with the label, the bewildering choice of qualifying conditions — oh, and managing the actual BPD symptoms, we can at least be thankful about the following. There are some highly committed, powerfully effective specialists; the Government issued constructive guidelines about personality disorders (No Longer a Diagnosis of Exclusion); and there is an excellent national membership organisation for people with BPD — Borderline UK. And since the condition is regarded as treatable, I’m hoping that it won’t be too long til I’m a different sort of BPDnik — simply a Boringly Public Doglover.

 

 

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