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I got a comment this week which has pulled me back to my blog (thanks, Ivy!). In full, she asked:
“I’m curious about your experience of DBT and how you’ve written that you have ‘built a life worth living’ and yet seem to still be despressed and struggle with suicide, etc. I tried DBT – you could call me a “dbt dropout”. I found the classes patronizing and I found the skills were, well, not effective… For me, it was not an effective way to treat a client with BPD to tell them you won’t speak to them if they do not “do this”. That screams of abandonment, in my opinion, and that’s one of the main symptoms of BPD.
Obviously, your DBT experience is much different, yet your struggles with suicide and depression seem to be similar to mine, therefore I am intrigued.”
These are all interesting and important points, and I think it’s going to take two separate posts to do them justice. I’m going address the questions about the effectiveness of DBT first, and tackle the question of how clients experience the delivery of DBT (the feeling of being patronized and the abandonment that comes from the 24 hour rule) in another post. Phew!
So: does DBT really work? After all, I’m still not the happiest bunny on the planet. Yet the difference between my life before and now is immense. Prior to starting DBT, I was chronically suicidal. I mean every day. I was inching closer and closer towards completed suicide, with increasingly frequent hospital stays. I was leaving my twice weekly (undirected) therapy so distressed I’d hurt myself. I was drinking more and more and had some near misses with accidental death. I was in a job far below my capabilities, and frequently off sick. The only friends I saw were the ones who broke their way into my home, because I cancelled any plans I’d made- overcome by an inexplicable dread. It’s hard to describe the constant noise in my head. Now? My dangerous behaviours are gone. I have a fab job, see my friends, ’live’ well, even on the days when depression and suicide creep back. I guess their occasional guest apperances may sound disappointing. It doesn’t feel disappointing to me. I have been battling with them for 20 of my 28 years. I never expected this to be the final round. In the last few months, the event that’s had the biggest impact on me has been my partner’s decision to relocate, putting us in the longest-distance relationship you can have on this earth. It’s been hard. I’ve faltered. Has DBT failed me? The only thing DBT has ‘failed’ to do is to control other people’s (e.g. my partner’s) behaviour, and it never promised that…
Some other random thoughts in no particular order:
*What most people talk about as ‘DBT’ is only Stage 1 of four stages. Stage 1 doesn’t promise to get you to a point where life feels worth living. All it claims to do is bring target behaviours down under control. When Marsha Linehan talks about ‘quiet desperation’, she is acknowledging up front that bringing dangerous behaviours under control is not enough- it just traps us in a life of quiet despair. Stage 2 of DBT addresses the underlying trauma which got us so stuck in the first place. Stages 3 and 4 address ordinary problems of living and developing the capacity for joy.
*DBT incorporates a huge range of skills. These include: various ways to be interpersonally effective so you get what you want, maintain the relationship, or retain your self respect; a wide variety of ways to help you manage your distress; many different ways to regulate your emotions; various strategies to build mindfulness into your life. I don’t believe for a second that every skill will work for everyone. There are some skills which don’t do it for me, and a couple which make me worse. However, I also find it very hard to accept that there are any people for whom none of the skills are effective. The skills are not bizarre or crazy or even particularly unusual. Many of the skills are explicitly teaching us what ‘normal’ people learnt naturally to do as they grew up, because their environments gave them a chance.
*Not even the best treatments work for everyone. I’m training to be a psychologist. We use an evidence base to decide what is likely to work. DBT has such an evidence base. However, the evidence (yes, more evidence!) suggests even the most ‘effective’ treatments- the ones with the best evidence- do not work for up to 1/3 of clients. When this happens, it doesn’t matter how ’effective’ the intervention was in theory, it’s back to the drawing board as far as that particular client is concerned.
*I wanted and needed DBT to work. I chose to do DBT, and went to great lengths to track down a therapist. I was invested. I guess DBT might call this ‘willingness’. I am absolutely *not* saying that DBT doesn’t work for others because they are not trying hard enough or don’t want to get better. Even DBT itself refuses to say this, as one of its core beliefs is that the client cannot fail- only the therapy and the therapist can fail. However, I am saying that I wasn’t sectioned and thrown into a DBT programme against my will, or told that DBT was all that was on offer when I actually wanted a different kind of treatment. And I’m sure that makes a big difference. However, I certainly do not think that I- my attitude, investedness or any other characteristic of mine- was the only or even the main factor which made DBT work for me. I think a lot of it was down to the therapist I had. Over and over again, in so many different kinds of therapy, the quality of the therapeutic relationship has been shown to be the main predictor of success, and I got very very lucky with my therapist. I’ll talk about this more in my next post on how DBT is experienced by clients…
*DBT only works if you use the skills. And I’m talking about me here, not ‘you’. I know that many of the DBT skills work well for me. That doesn’t mean that I always use them. Sometimes I forget, slipping automatically back into old habits. Sometimes it feels too hard, perhaps because there’s a new situation I haven’t had any practice applying them to. And yes, sometimes I just plain choose not to. Some days, I choose to wallow in pain rather than help myself. I don’t always realise that’s what I’m doing, but the next day, when I pick myself up and try again, I can see that’s what I did. I think this says more about my less than perfect willingness than about DBT’s effectiveness.
*Building a life worth living. That’s what my blog’s called, and that’s what I’m doing. It is not yet built. I will be building it each day for the rest of my life. Sounds tiring? It is. But there is so much satisfaction and even some joy in the building. Every time I succeed in soothing instead of escalating my distress, every time I get out of bed and make it into work, every time I see my friends instead of cancelling, that’s building a life and living a life all at once.
In the months before I began DBT, my dangerous behaviour was escalating. I was ending up in hospital with increasing frequency. My relationship with hospital was complicated. It was a safe place, to an extent. But as soon as I was there I was desperate to leave again. The environment was nice (it was a private hospital) but the nursing staff were so unskilled and unempathetic that I wouldn’t have trusted them with my dog. I’d go in for the night and then skilfully talk my way out of there the next morning, determined to try harder and do better.
There have been times in the last year when I have had urges to go to hospital so strongly they felt like physical cravings. There have been other times (notably this summer) when I was acutely suicidal and actually quite unsafe, when it might actually have been helpful to be able to spend a few days there, getting back on my feet. Because it hasn’t been willpower or skilfulness alone that has kept me out of hospital. In January, my insurance company cut me off. I have some (limited) money for treatment, but have never been able to justify to myself spending £1000 for 24 hours in hospital, when this would pay for 8+ weeks with my fantastic therapist who gives me far more help.
I still get the odd hospital related pang, mostly at random. An ambulance drives past me and I wish I was in it. I walk past a medical hospital after work and look up at those huge lit windows and imagine the warmth. I think a lot of this comes from spending a whole year in hospital aged 13. Although it was a terrible, desperate year, it was a large chunk of my life at a formative age and I think the feeling is akin almost to ‘homesickness’. But even as I feel it, I know I don’t really want to be there. I know I can help myself better than they can help me. That wasn’t true before DBT.
Today marks a year survived without resorting to going to hospital. It’s a mixed anniversary- a year since I almost accidentally died, having been failed by the aforementioned nursing staff. But that story’s for another day. Today it is cold but sunny. I spent a perfect Sunday with my girl (and whoever’s thinking that ‘perfect’ is a judgement… I know, but I’m using it anyway!). And I have skilfully kept myself alive and well for a year. Here’s to the next…
I know that this feeling will not last forever. I know that these obsessional self destructive urges will pass. I know these intrusive thoughts won’t torment me forever. But today, yesterday, probably tomorrow, I am up to my neck in misery, and pain is everywhere. These are the days when the world seems to be tuned wrong. Everything is too loud and too fast and too bright. Nothing that anyone says is right. I am so unhappy in my head that I would sign up for a full lobotomy if they were being offered. And so uncomfortable in my skin that I would like to rip it off.
All I have to defend me in battle are the DBT skills. I have pushing away, a form of thought blocking that feels pathetic and oh so very tiring against the constant heavy onslaught. I have observing and describing, but putting words on my reality is making me more desperate. I have letting go of judgements by putting them on leaves. I have used all the leaves in South West England, and I do not feel better; maybe I have clogged the river downstream. I have radical acceptance, but this doesn’t address the need to start to change my situation in some small way. I have distracting activities which today are not distracting. I have comparisons, which are dangerous because it’s so easy to fall into making the wrong ones. I have sharp physical sensations, and today these are the ones that can get through to me. Jumping into freezing swimming pools. Orgasms. Ru running and running. This is my first experience with a distress which prefers to be shocked than soothed away.
Today I am throwing every skill I can think of at this misery. Not just once but second by second from the moment I wake up until I finally fall asleep. Sometimes by 3pm I cave and have a drug induced rest. I feel so very small, and the skills so very inadequate, against the forces I’m battling. And to complicate matters, I am essentially fighting against myself, and I’m not always on the right side.
I am not a priori anti psychiatry. Hell, I even did two years of a PhD in psychiatric research before deciding it wasn’t for me. I struggled in the parallel universe where people spent their lives researching autism or bipolar disorder without ever having met- let alone lived or worked with- an autistic or biopolar person. People who then published their findings in esoteric jargon in pay-to-access journals where only people exactly like themselves would ever read them. People who planned where their reserach could take them career wise, but never whether or how it would actually apply to people who lived with these conditions day to day.
The research institute was a beautiful shiny new building which towered over a mental hospital. When we opened our state of the art windows, we sometimes heard them crying out of their windows- the ones that only open an inch. It was an uncomfortable crossing-over of my lives that I sat with every day- the knowledge that it was only luck and grace which kept me from being a patient and instead allowed me to be someone who studied them. I couldn’t play the game, couldn’t live with the juxtaposition, and I felt so unhappy in that environment that I left.
Still, I’m not anti psychiatry, or even psychiatric drugs. I think it helps that I live in the UK and not the US, so psychiatry isn’t so dominated by big pharma (or at least, it’s better hidden). When I was hospitalized two summers ago, I resisted three whole weeks before caving to the pressure to take the drugs. I had a relatively open-minded psychiatrist, and a partner who was a research chemist, and so was able to convince them briefly of the benefits of taking 5-htp (a natural precursor to seratonin) rather than SSRIs (a set of anti-depressants which delay the reuptake of seratonin, leaving it for longer in the synaptic cleft). Nothing was changing and- aware of my insurance dwindling- I decided to take a chance on prozac. When the psychiatrist went on holiday, her stand in (one of the Old School of psychiatry) came to check on me. I told him I wanted off the prozac. His response was to draw me a synapse. In the middle of a PhD programme, a strong component of which was neuroscience, my response was to want to punch him in the face. Instead, I smiled politely and switched off.
I was lucky. I had an internet connection, a debit card, and a hospital which didn’t check my post. I bought books about natural alternatives for healing depression. Books about diet and yoga and acupuncture and reflexology and cranial massage and fish oils and light boxes. When I came out of hospital I tried all of these things. None was very effective. I suspect this was because I. Did. Not. Have. Depression.
Over the next year, I became increasingly suicidal. The psychiatrist hiked the prozac dosage up again, saying that high dosages of prozac combatted OCD, and she thought there was a compulsive/obsessional component to the suicidality. On prozac, I shook and twitched constantly. My face was contorted. I blinked continually. My hands flexed themselves several thousand times a day. I could have lived with this, but suicide did not recede. Instead, it got worse, more compulsive. I developed ‘magical thinking’ I’d never had before- when a man passed me in a tshirt that said ‘Today’s the day’, I thought it was a message just for me, that the Universe had decided the date of my death. When I tried to come off the drugs for my own sanity- just to see whether I might feel better- my family and partner freaked. They called me irresponsible, accused me of dicing with death. The psychiatrist called me ‘non-compliant’, said I was failing to help myself. Actually, I was trying to save my life.
I came off the prozac very early into DBT, with minimum discussion or fuss. I stopped twitching, and obsessed less about suicide. Now I look back on that time, and wonder how it could have been allowed to go on for so long- the misdiagnosis, the damaging drugs, the ineffective therapy, the useless psychiatric input. I have BPD, which means I find it hard to identify my emotions. But today, sitting at my desk in the psychiatric institute, trying to write up the research paper so that my half-completed PhD wasn’t for nothing, even I know that I am very very angry.
I don’t know if this is real term- a quick google didn’t reveal anything; I came across on it in my Other (professional) Life in the context of adopted children. There it was more to do with who children choose to hang around with: the idea that a child who has very little sense of who she is may borrow the biggest ego around and stick with that person. But it got me thinking about my own life.
One of the traits in the BPD diagnostic criteria is a fragile sense of self:
“ Identity disturbance: markedly and persistently unstable self-image or sense of self.”
I’ve never known quite what that meant, or how it related to me. But I think now I do.
I don’t know what I think about things. Because of past experiences of being fed- and believing- an entirely fictitious version of my life- I don’t trust myself to know what to think. I live in constant fear that I am simply the victim of the last person I’ve spoken to, that I will simply go along with whoever shouts the loudest. Aged 17 and under the influence of a Catholic school, I converted to catholicism. I rejected my gayness, and decided to live a simple life of celibacy. Aged 20, I met a girl (still my partner, 7 years later). She told me that she thought it might be ok with God, and so I jumped into bed (well, you know what I mean). Sometimes the ‘gays go to hell’ evangelicals get frighteningly close to my ear, and I move away to protect myself, but I don’t know what is right or wrong, and I don’t trust myself to work it out.
Another- less heaven or hell- example. I don’t have an ‘image’, a distinctive way of dressing. I might wear low slung baggy jeans one day and smart work trousers the next, without particular relevance to the occasion and without feeling that either of these images is ‘me’. I don’t know what my favourite colour is. I don’t know what I enjoy doing (though I’ve been working on that). Even when I instinctively feel that I like something, I wonder why I like it, who I am copying from. This confusion has stretched into relationships with real life people too. Experiencing really strong feelings towards people and not knowing whether it’s because I want to be with them, or I want to be them.
But at the same time, I can be horribly inflexible: I know exactly what I want to eat tonight and nothing else will do. I will walk out of the supermarket empty handed and go hungry for the evening because they didn’t have the very specific thing I *needed*. I will give up and do nothing, because the highly specific thing I needed to do at that exact second to make me feel better is unavailable, and nothing else will do the job.
What am I doing? I don’t think I’m borrowing people’s egos exactly; my fragile sense of self doesn’t seem to make me cling to certain people, or morph into them. Rather, it makes me believe that if I imitate enough of the components of others’ lives, everything will change. Each time I flounder and feel afraid, I look to others’ lives, and I feel that if only I had the same diary, or exactly the same pen to write in it, then somehow my life would be okay- my life will be like their life. I will stop being me and start being them. This time, I ended up buying the same diary, but have not yet been able to find the same pens. And so it’s not working, it’s not right, and I go from shop to shop each day looking for exactly the right pen that will make it *all* better.
Even though I know it won’t. And I will still be me.
I’ve been thinking on and off for over a month about a post by Kristin on Borderline Families about being used as the fall guy for her daughter’s difficulties. She writes movingly about the finger pointing, the suspicion that falls on our families, the wondering about what went on behind closed doors that made their children turn out like this.
I’ve been caught up in it all over the years. I have written (and sent) the awful letter detailing how my mother ruined my life, not in group therapy exactly, but during a very long and influential inpatient stay. I have gone much further than most. I was the one who pointed the finger and spoke the words, even if my arm was being manipulated by someone else. As a young teenager, during that hospital stay, I accused my father and then other family members of sexually abusing me. I was in an environment which held that everyone has One Big Cause of their problems- something Bad that had happened in the Past. Families in general were Bad. Had damaged us. Didn’t understand us.
The social services took me away from home and gave me a ‘new family’. They really were bad, and they did damage me. The new family kicked me out and I came to my senses and went home in the end. But the whole witch hunting blame game took years from me, and from them. And it took many more years indirectly, when I struggled to manage my health while avoiding ‘mental health professionals’, whom I felt sure would harm me.
I know absolutely that my parents did their very best for their children. But I can also finally admit that it wasn’t enough, wasn’t what this child needed. That’s a dialectic I can’t get my head round yet.
I am reluctant to write about my childhood. Private schools, home in the country, horse riding, yadda yadda… I don’t want to write it because what people invariably say next is ‘materially wealthy but emotionally deprived’. It’s what the staff in the hospital said. But it’s not true. My mother gave up work when I, her first child, was born, and we have been her life ever since. She was present- literally and emotionally- for every second.
It may well be something about me, as both my siblings emerged from our childhood unscathed. Indeed, it is my worst fear that I am too greedy and bad, that nothing will ever be enough for me because I am endlessly needy.
My internalized therapist is saying ‘it doesn’t have to be black or white, you or them’. And it’s true, it could have been a mismatch. What they offered was ok. What I needed was ok. It’s just that the two didn’t match up. But part of me wants to scream ‘all that crisis and tragedy and disaster over a mismatch? How many thousands and millions of others don’t get quite what they needed, without ending up like me?…’
As the next part of therapy, which deals with the past, gets closer, I feel sicker and sicker. Not because I had a terrible past, but maybe because I didn’t. Nothing very bad happened to me. I trust myself and (this time) the therapist enough to know that we will not magically ‘find’ otherwise. But I still feel sick.
I know that I have to do this to give myself a fighting chance at life, to have any chance of finally shifting the depression and the suicide ideation and the shame. But I feel terribly sad. My parents are in their sixties- we don’t have much time left together. I want to spend these years enjoying and appreciating them, not digging up and working through petty resentments and feeling constantly guilty because I’m wishing the therapist was my mother. Yet I know that the longing to be mothered which is so all-consuming in this therapeutic relationship will keep rearing its ugly head unless I deal with what I want but didn’t get, and I can’t live like that.
There are days when I think that I can manage to balance both of these- the therapy work and the relationship with my parents. I certainly feel able to embrace the pragmatism in DBT which says that regardless of who did what and said what to whom and what got us to this point, I’m the only one now who can fix my life. I feel able to take this responsibility and I’m confident that this is not a blame game.
But there are many other days when I think it would be better to die than to betray them again; that it would have been better for them if I had died at the first attempt, before the allegations which almost broke them. Today is one of those days.
I think I believed when I started this that as I recovered from my problems I would walk into the sunset, hand in hand with my partner. The truth is, we haven’t been hand in hand for quite a while now. When I was life-threateningly ill, she could not have been more supportive. But as I’ve got better, her exhaustion and anger and resentment over those years has started to creep out. Technically, it’s a good sign: she’s allowing it to come out because she sees that I’m strong enough to cope with it. And most days, I do indeed cope. But it’s terribly hard not to experience it as a ‘punishment’ for getting better.
DBT keeps an eye on this- the risk that as a person improves, their environment sees this and makes more demands of them which make them retreat back to the previous position of relative safety. But unfortunately neither DBT nor my therapist nor indeed my partner herself can control how she feels. She knows that this is bad timing, but it’s how it is. When she stops in the middle of a raging argument to ask me if I’m feeling suicidal, I know that if I say ‘Yes’, the argument would go on hold while she helped me to feel ok. But I force myself to say ‘No’ (even when the answer is ’yes’) because however much I want us to be ok, I know that the issues wouldn’t go away and the only way forward is through them.
Getting better is not the ‘end’. There are no sunsets at this point. It’s where the problems of how you’ve lived before catch up with you. And the only thing I can do is face them and hope for the best. The truth is that my relationship with my partner (a main incentive for getting better in the first place) may not survive this next phase. But I remind myself a thousand times a day that this is the price of having been ill, not the price of getting better. And I have to pay it, even though I never chose to be ill.
The other issue I’m struggling with is what happens within the therapy itself as you ‘get better’. DBT prides itself on reversing the contingencies usually present in therapy- theoretically, you get more therapy, not less, as you get better. This occurs to avoid reinforcing problematic behaviour, and is also a basic ethical point- if therapy is proving ineffective, it is unethical to continue treatment, or simply increase the treatment. This does indeed seem to be how it works year to year, when it comes to renewing contracts. But in terms of day to day telephone contact, it’s hard not to conclude that getting better means losing the help. Which is scary when I relied on considerable help to get better.
Despite all this, I’ve got over the brief episode of ambivalence I felt about getting better. There are days when I miss the companionship of suicide, there are still days when the ‘noise’ of urges to cut is all I can hear. But every day I choose not to go back.
I’d never really given much thought to borderline personality disorder, either as a patient or a researcher. Perhaps because I served the majority of my hospitalization time 13 years ago with other young teenagers, I knew nobody with the diagnosis. And probably because the largely genetic research institute where I studied was preoccupied with relatively ‘clean’ straightforward diagnostic categories, I knew nobody who studied it either.
As far as I was concerned a label of BPD was psychiatry throwing up its hands and saying ‘We don’t know and we’re not going to waste any more time trying to find out’. And with its 10% completed suicide rate, it seemed like a death sentence. Because BPD is a disorder of personality, which is considered to be made up of stable ‘traits’, I also knew that it was very difficult to shake the label once it was stuck to you. This makes it very different from mood disorders such as depression and anxiety, since mood is a ’state’ rather than a trait.
It was a second opinion psychiatrist who first uttered the words ‘borderline traits’ about me. I’d been sent to her because no treatment was working. We chatted for an hour and she waxed lyrical about my resilience, my intelligence, my ability to maintain good relationships. I left feeling good about myself (which doesn’t often happen!). And then couple of weeks later, she wrote to my psychiatrist saying I had ‘borderline traits’. I was devastated. I raged against her, against my psychiatrist who had sent me to her, against psychiatry as a whole. But since her ‘opinion’ seemed to be entirely based on my self-harm (which had been entirely conceived of and conducted in an adolescent unit, half my lifetime ago), I finally dismissed it altogether.
Five months later, things were no better. This time I found my own ‘second opinion’ psychiatrist. He asked me how likely it was that I would commit suicide soon. I have frequently lied through my teeth when asked this question in an attempt to avoid being hospitalised. This time, I felt so desperate that I gave an estimate approaching the truth. I said 80%; I was being conservative. He recommended that I should have DBT as an inpatient for several months. He too said ‘Borderline traits’. I was slightly more ready for it this time.
My first encounter with DBT a year ago was more of a near miss. I was having therapy as a hospital outpatient. It was supposed to be CBT, but it drifted further away by the week. We veered alarmingly between the past/transference/the subconscious and tackling practicalities like planning my week hour by hour so there was no space for suicide. Anyway, it must have been a ‘practical’ phase because the therapist showed up with lots of photocopied sheets. Pages and pages of ideas on how to tolerate distress without resorting to suicide. Practical, down-to-earth suggestions which had a chance of working.
Another week there was another batch of sheets. Lists of emotions, with handy hints to help you identify which one you might be feeling at any moment, and what these emotions might make you want to do. I felt like they had been writen for me, like someone had seen into my brain and known what I needed.
Months later, I heard about DBT via another route. I got hold of the skills manual for treating Borderline Personality Disorder, and there were the distress tolerance and emotion regulation sheets the therapist had given me. She had covered up the ‘source’ at the bottom of the pages when she photocopied them. She told me she’d done this because her clients regularly freaked out when they saw the names of disorders they hadn’t been diagnosed with on worksheets and the sessions tended to degenerate into ‘You’re saying I have OCD… but I don’t! Or do I?..’ So she’d decided to just use what she thought might be helpful, without letting her clients know where it came from.
I don’t know how to feel about the fact that had I known about DBT then, I might have begun many months earlier. It hurts to think about how close I’ve been to suicide over the course of this year, and the possibility that all those near-misses might have been avoided. However, I also know that the therapist was right; at that stage I couldn’t have coped with any suggestion that I might have Borderline Personality Disorder; neither would I have been able to make any use of the worksheets if I had associated them with BPD.
