How to help......

Some of you may be wondering how you can support your friend or partner or family member as they live with BPD.  The following music video is the best tip I've found so far!

http://www.youtube.com/watch?v=sgRb_lfIZ6A

Stigma Stinks

One would expect, even assume that those in the healthcare professions would hold back on their prejudice towards those of us with a BPD diagnosis.  There are clear guidelines for staff on care of people with a BPD diagnosis and for those who self-harm.  

To keep balance, I will say now, that the majority of people I have encountered in healthcare settings have been perfectly fine with me (even when a little flummoxed at my response to certain situations).  However, when responses are negative it’s so hurtful and undermining of any self- respect we have mustered up in the first place.

I have recently come home from a short stay in hospital.  I had an operation for a non-mental health related condition.  Most of the Dr’s and nursing staff gave me the same treatment they gave everyone else.  Even my consultant, who was actually one of those who I have completely flummoxed by disassociating while in an appointment with him, causing him to doubt my mental capacity to understand and make choices re. my treatment plan without additional support.  This was probably my fault because (for fear of stigma) I had told him about my depression diagnosis but not BPD when he took my medical history.

Anyway, back to the point.  All the staff who cared for me during my hospital stay must’ve noticed the scars and bruising to my forearm, which looked quite bad as I’d had a tricky couple of weeks.  I had thought the bruises would’ve gone by the time I went into hospital – but they weren’t!

Of all those staff, only 5 showed any indication that they had noticed.   

One, with a gentle and caring touch as he checked my pulse, another two with a lingering of stare and then continuing as normal – no change in attitude.  Then a theatre nurse who commented 

“Those are nasty bruises. How did you get them?” To which I gave my standard response of,

“Just a bit of stress relief!”  She seemed a little embarrassed at that and I never saw her again because shortly afterwards I was unconscious till back on the ward.

The final one was the bad one.  A Bank nurse came on duty as the team were short staffed that day.  When she took my blood pressure she asked,

“What happened there?”  I gave the same response as before to which she said “Ah!”  From then on she treated me as if I was scum.  She glared at me if we had eye contact, she snapped at me when I asked if my observations were OK as I was hoping to go home later that day.  Her attitude towards me had completely changed while she was still friendly and cheerful with everyone else.

This triggered off in me a host of other unhelpful emotions and thoughts.  For example,  I was soon convinced that all the staff hated me and were trying to send me home to get rid of me, not because I was ready (even though I wanted to come home!)  My anxiety levels were going through the roof and this was reflected in my blood pressure and heart rate.  I became irrationally tearful and over compensated by getting louder and less appropriate with my humour around the other patients.  I had to battle with the urge to self-harm even more than normal.   I had a resurgence of suicidal thoughts.  My reaction culminated with me packing my bag and trying to sneak off the ward behind another patient who was leaving.  This got me shouted at by another nurse and bundled back to sit by my bed, (I’d had abdominal surgery and carrying and lifting are big no-nos for a few weeks).  This left me in such a state that when Joe finally arrived to pick me up I was a weeping wreck as soon as I was out of sight of the ward staff.

The point of today’s somewhat rambling blog is this.  Attaching stigma to anyone (for any reason) is a crap thing to do.  It brings no benefit to anyone.  It is based on ignorance of a bigger picture and not balanced facts (i.e. even if you have seen your negative beliefs about Borderliners in action, and experienced it first hand, it does not mean all Borderliners are the same or that those who suffer with it the most, can’t be treated and recover).  Stigma exists only to perpetuate a sense of powerlessness to change in the stigmatised individual or group, and to make those who do the stigmatising, falsely feel better about themselves.   Stigma stinks!

Some would say I should put in a formal complaint about the bank nurse but I know there is no point.  First, my diagnosis would work against me.  Those of us with BPD are assumed to be over sensitive, awkward and manipulative and the nurse would say that I was being typically Borderline and paranoid.  Second.  It would just be my word against hers.  No-one else will’ve noticed because no-one else was present in our conversations and the glares and snide looks were subtle.  Third, though what she said and her change of attitude were real, my fears, intrusive thoughts and feelings related to that grew as the day went on, and with reflection, the situation may have been a little exaggerated in my mind by the end of the day.  So – not a case for a formal complaint, but a case study on how those in caring professions need to be professional and not allow their personal prejudices and feelings to affect the way they do their job.  End of sermon!

The Void

1.      Chronic feelings of emptiness

Have you ever been so exhausted that you stop feeling anything and there is no point doing anything about it?

How many times have you gone about your daily business on auto pilot, just going through the motions?

When have you sat in a room with other people: colleagues; family; friends; customers – it could be anyone and felt that you have absolutely nothing to give?

I think, probably most people can relate to these things some of the time.  Such feelings are pretty normal now and then.

They are a problem for me and others with BPD because they are overwhelming for much of the time.  I often go about my daily business and my outer persona is just a brittle, empty shell covering the chasm inside me.  Like a black hole of self-doubt and pain or an empty vacuum that draws bad experiences and circumstances towards it.  They try to fill the hole but can’t because it is nothing, and you can’t fill nothing.

I’ve tried to fill it myself.  Through my twenties it was adrenaline.  Pushing myself beyond my limits doing adventure activities.  My best attempt was taking up white water and sea kayaking because I was afraid of water.  I my thinking was kill or cure, literally, and in the process I got the buzz of terror and survival which made me feel alive in short bursts.  Although I took risks doing rivers and sea trips beyond my skill I didn’t manage to get killed or even hurt  I just got better until I could not overcome my fear enough to take it a step further.

I became a Christian at 16, and my faith has helped me resist suicidal urges and tone down self -harm.  I believe that Jesus came so that we/I can have life in all its fullness (and fullness includes the joy and the pain!)  My faith is still strong and I don’t understand why it does not fill the emptiness – it just doesn’t. 

 

I’ve worked my guts off for vulnerable people and marginalised groups – I probably have even made a positive difference for some people.  At the same time I have felt little satisfaction – like a cog in a big machine, one that doesn’t really matter.

I thought being in a genuinely loving relationship, with two way love, would make a difference.  However, despite the depth and strength of my husband’s love for me and me for him, it does not touch the sense of hollowness that pervades, in any consistent way.  Having said that, I have just let my husband read this and he says,  

“When you are at rock bottom, at your emptiest, you still give something to me.  Especially when I am down too.  Genuine love transcends your feelings, so when you are feeling bad and becoming protectively self-centred, you do so in a loving way.”

I find this difficult to accept.  When feelings are so overwhelming it is hard to believe they don’t fully relate to the facts.  This is one of the biggest stumbling blocks to recovery for me, one I hope DBT (dialectic behavioual therapy) will help me address.

I have had various therapies over the years.  Cognitive Behavioural Therapy, Psychodynamic Counselling, Narrative Therapy, Group Work and it has been a bit helpful to varying degrees.  I have challenged thought patterns and negative beliefs.  I’ve gained insight to how I am now from my past – but nothing changes the sense of nothing.  Indeed, my failure to be significantly changed through hard work at these therapies has increased my sense of futility and emptiness. 

I can say with confidence that I do not understand this dynamic.  I can hardly explain it.  It is beyond me.  Long term change has so far eluded me.  It is for this reason I see DBT as my last ditch attempt.  I shall say more about that in a future post.

A Cut Above...

For many of those who live with BPD this is the most misunderstood and stigmatising aspect.

Please note, anyone who struggles with self-harm etc. may find this blog entry triggering.  There is discussion of methods so be careful.

1.      Recurrent suicidal behavior, gestures, threats or self-injuring behavior such as cutting, interfering with the healing of scars (excoriation) or picking at oneself.

Self-harm and suicide are lumped together in the diagnostic criteria, but I am going to treat them separately.  Today’s blog is about self-harm.  I might discuss suicide another day – or maybe not!  It is probably the actions and behaviours covered by this criterion that give us with BPD the reputation of being attention seeking and manipulative.  I say self-harm is not intended to be either (well not in my case anyway).  It is a way of reducing pain and distress.

The slippery slope of self-harm as a coping strategy started for me by accident when I was about 9 years old.  I was plagued by Styes on my eyelids.   One day I discovered that if at the first hint of pain I plucked the eyelash from the sore bit, the brewing stye went away.  I also found the process of plucking completely distracting from my feelings and stresses.  Very soon I was plucking my eyelashes completely and not giving them chance to grow back.

By 11 or 12 I was desperate for comfort from the isolation I felt and the sense of being invisible, and in that sense I recognise that this initial stage was a cry for attention.  However, it was not an “I want to be the centre of attention” demand, but was a cry of abandonment and pain that having been ignored for year on year, had to get louder and stronger.  To this end I tried so hard to break my own arm – and failed.  In my attempts I caused some bruising the pain of which made me feel more alive and calmer.  If I hurt I existed.  I was able to survive outside my own imaginary world where love, care and feeling safe were the norm for a while.  This on-going stress relief was always done in secret.

At 16 I saw a documentary about teenage alcoholism on television.  The teenagers featured had social workers, support workers, worried parents and teachers all involved in helping them.  I wanted, no, needed a piece of that.  I was still invisible (Penny 1 was anyway).  Penny 3 took the lead a lot of the time in those days.  During the programme they mentioned a statistic that if an average 15 year old drank a certain amount of cider for a short number of months they would be physically dependent on alcohol, and as I saw it, therefore going to get all that help and support.  Lucky for me before the end of the time it took to become an alcoholic two things happened.  One, I looked young for my age and had limited money so my source of cider ran out.  Two, I got involved with the Christian Union at School and became a believer and it seemed appropriate not to be an alcoholic after that.

My faith was, and still is helpful in keeping a check on the self-harm habit.  I’ve not managed to stop completely though.  What usually happens is I stop one thing and without thinking replace it with another detrimental behaviour.  Over the years the things I have done (and not all at once) includes; pulling out hair (head and eyes); cutting; hitting; burning; excessive use of laxatives; binge eating and comfort eating; peeling my fingertips; mini-over doses of prescribed drugs; infecting wounds on purpose.  You get the picture I’m sure.

I can’t communicate strongly enough how much I HATE this aspect of myself and how ashamed it makes me feel.  It has been my dark secret till recent years when I started to accept I can’t sort this out by myself.  I do hope you can read and not judge for this, “coming out” as a self-harmer is a risky business.  

It isn’t just me who struggles with this either.  Joe lives with me living with a self-harm habit.  Years ago, when I confessed what my injuries were after he hinted he knew it was very difficult.  My self-harm hurt him deeply, he did not understand nor could he get his head round it.  He had never known a “self-harmer” before and for a while it was a thorn in our marriage.  He doesn’t like it and never will (rightly so I think), but he is now able to react with compassion and support.  Being the partner of someone with BPD can be very demanding – and also amazingly good.  We are some of the most sensitive, empathic and compassionate people around when not in crisis.  If I steal a phrase from C.S.Lewis in a grief observed, “with great joy comes great pain.”

Why Me?

*Warning: this post may be triggering.

Current thinking around the development of BPD can be summed up as this.

“We don’t know!”

However, an individual with a genetic vulnerability who also experiences trauma, neglect or on-going invalidation during their childhood years may well develop BPD which is most commonly diagnosed in the early 20’s of sufferers.  This is true for a high percentage of those with a formal diagnosis.  This was certainly true in my case.

It isn’t an exact science though.  Some sufferers experience no significant traumas or neglect, come from loving and supportive homes and yet still develop BPD.  For this reason, there are suggestions amongst some researchers that the biological vulnerability may be more significant than the childhood environment.

I’m going to tell you a bit about my childhood experience in snapshot form.  Not the whole story – I’ve not been blogging long enough to be sure if I’m comfortable with that yet.  Maybe further down the line!

I had two parents and one older brother.  We lived in a rented semi-detached house in an average suburban town.  The problems started when I was very young (maybe 3 or 4), although I can’t exactly remember – and it could have been normal sibling disharmony at first.  The bullying from my brother escalated over the years.  By the time I was 7 and him 9 he hit me and terrorised me on an almost daily basis.  When I told my parents or aunty I always got the same response,

“What did you do to provoke him?”

 I learned that it was my fault and I deserved it.  By the time I was at high school I had stopped even trying to ask for help to stop him.  It was just my normal life.  I would come home from school and hide till my mum came home and it was a bit safer.  I was often bruised, but at school the marks were never noted or questions asked about them.
 

There was other stuff too.  Like the time I got impetigo all over my face.  My mum refused to take me to the Dr (and under 16s weren’t allowed to go without a parent).  It didn’t get sorted till my dad caught it, got treatment at work which I stole when he came home.  Another time I was knocked unconscious at a sports event.  I went home with my mum.  The next night the pain in my head was so bad I could not see and I was screaming.  My parents told me to go back to bed and did nothing.  These and other similar events just added to my belief that I did not matter or exist in their eyes except as a punch bag and skivvy and that expecting help or support from anywhere was pointless.

At high school I couldn’t fit in, perhaps partially because I was brighter than most of my peers.  I was bullied and an object of ridicule for 3 out of 5 years, and it continued, though less intense, when I went to Sixth Form College.  By this time my separate coping selves were quite well established and outwardly I appeared to function fairly well.  I protected myself in an aloof cocoon, not seeking help because this was my life, my norm.

And so the scene was set.  Genetic vulnerability (I assume as there is no specific test for this), a history of neglect, abuse and serious invalidation (not being believed or not having needs and emotions taken seriously).

Who Am I?

1.      Identity disturbance: markedly and persistently unstable self-image or sense of self.

So, what I’m about to explain is part of the package – that doesn’t make it any easier to live with.  Well, actually it did at first, when I got the formal diagnosis.  At that time as I read up on it, suddenly things slotted into place and it made some sense of my whole life.  Once I got over the buzz of enlightenment life was just as difficult as before.

The trouble with experiencing and responding to life with the intensity us Borderliners feel is that it frequently gets exhausting and overwhelming.  Managing the complexities of relationships and responsibilities just at home is tiring, add to that work, friends, the general public, staff in shops and services, mental health workers and neighbours it is all too much.

I have developed a strategy for dealing with this.  I think everyone does it to some extent, but I get the impression I do it to a greater extent than the general population.  I live my life through different versions of myself for different contexts – a bit like wearing slippers in the house,  wellies for going out in the mud and trainers when going for a run.  The descriptions below are just snapshots because I really can’t explain it fully.  Now, before I introduce you I will apologise to all teachers and grammar pedants for the switches between first person and third person text.  Please accept this as an illustration of how difficult this is to explain with any clarity.  That said; let me introduce you to the most definable of my Pennys.

Penny 1.  My Private Self.

She is very shy and experiences a raw, ragged, screaming emotional pain much of the time.  For the most part this is kept inside her and does not get shown to others.  She shares herself with Joe (husband) and John (CPN) more than anyone else.  Sometimes the internal screaming gets too much and she needs to release the pressure through self-harm.   She spends a lot of time wishing she would die to end the distress, and simultaneously feeling guilty because she doesn’t want to hurt or let down her husband and daughter. 

When something “triggering happens”, a rejection, an altercation with call centre staff, an injustice against her, Penny 1 escapes into the open.  This is bad news.  At these times all the intensity, pain and scary thoughts escape in a tsunami of distress.  She may become suicidal on these occasions and it is probably as distressing for anyone around her as it is for me.  The thing is, like a tsunami, it will pass and the secret is minimising the damage while it happens.  I/Penny 1 need to not be alone at those times so I don’t act on my thoughts when in that emotional state.  Ideally, the person with me will know that it will pass and not to panic – I would prefer not to go for assessment at the hospital for in all probability by the time I got there things will be easing off.  I think these are the worst BPD moments for me.  I am out of control, over the top, a complete embarrassment to myself, a pain to anyone around me and helpless to stop once it starts.

Penny 2.  My Family Self

This one is the trickiest to explain.  She is made up of aspects of all the others, and she is probably the least predictable.  This is because I do my very best not to fake, and to be the best mum and wife I can be at the same time.  These two are fairly incongruous a lot of the time because in not faking, my private self can take over making me over reactive, unpredictable in mood, irritable, unmotivated etc.  If this happens I fail at being available, consistent in love and care, actively involved with my fair share of chores and so on.  However, when I do manage it she’s pretty good.

Penny 3.  My Social Self

When she is strong Penny 3 is fun, friendly and good to be around.  She is alert to the feelings and moods of others and easily gets alongside people if they are out of sorts.  Social self though a little shy can chat and once relaxed be cheeky and humorous.  However, when Penny 1 is fighting with her she finds it hard to sustain her presence very long.  Once she’s run out of steam Penny 1 will take over and I will become anxious, too quiet, agitated and uptight.  

Penny 4.  My Professional Self

Penny 4 is confident, competent, calm, calculating (and likes alliteration).  She is clear thinking and creative being able to see a problem and offer a solution in a moment.  She can have an idea, bring it to the table and make it happen.  If she could be like that all the time she would be a millionaire with a multi-national business!  The trouble with Penny 4 is that she is drains all her energy and resources with one short burst leaving the other Penny’s with nothing.  Two hours of work and there’s trouble at home and no point trying to be sociable even if she wants to be.

More Impact - Anxiety, work and travel...

1.      Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days).

2.      Transient, stress-related paranoid ideation, delusions or severe dissociative symptoms

Those are the criteria today’s blog mostly relates to.  The anxiety part of this is a bit confusing because I have a concurrent diagnosis of depression and Anxiety.  I think the BPD version of this is marked by its sudden impact and intensity as opposed to when it’s anxiety for its own sake which persists without ceasing for periods of time and builds up. 

 

It’s usually triggered by a relationship.  An individual (friend or stranger) may look at me negatively, or speak to me in an unfriendly or disparaging tone of voice and I will know that I am despised and hated.  Someone might giggle as I walk past or start whispering.  I know this sounds paranoid, and perhaps sometimes it is – however, it has been true on other occasions so my reactions are not without logic.

This this will affect the way I outwardly respond to the person or people (and that’s for discussion another day), it will also trigger an internal response which includes the usual anxiety symptoms of palpitations, nausea, lack of sleep, thinking too much about it, inability to settle etc.  often, in a situation where this has happened once, I will struggle to put myself back in that context.

For example, a while ago I had the opportunity to join in regular professional acting workshops in my area of expertise.  It involved a 50 minute train journey there and back, on a route I knew well so I decided to give it a try.  I managed it for three weeks until one week there was a significant delay and I was sat opposite a stranger who clearly though I was odd or something.  I was trapped in the window seat – I have not been able to travel that route since and have lost the chance to participate on on-going professional development.

Another time I decided to try and use the bus since I have a bus pass and petrol has become expensive.  I would normally use my car which keeps me safe from these anxiety triggering situations, but thought I would be OK because I was not travelling alone.  I was with my daughter who being very pretty and chirpy distracts attention from me without knowing it.  We made it into town without problems, did our jobs and waited for the bus home.  When I got on the bus I said where we were going and plus 1, and presented my pass which allows me to travel with a helper/supporter.  He asked me how many in an aggressive tone – I didn’t understand the question having given him all the necessary information and my anxiety escalated until I saw is face morph into a grotesque snarl at me and he let me on the bus anyway.  Now I know the morphing part was not real and just a stress induced thing – but the rest was.  Since then I have not been able to get that number bus in case he is driving.

Talking of morphing heads, there is a context where me and my husband are together.  We are regularly involved in this group.  A while back a minority had a very negative response to his work which has had a significant impact on the organisation and us as a family.  No-one knows who they are or why they did it.  This uncertainty of where I/we stand with people is extremely triggering for me.  When there it is not uncommon for me to look accross the 100 or so people in the seminar and see heads morphing into serpents and demons.  Though I know it is not really happening it is terrifying.  My CPN (John) assures me it's an anxiety/stress reaction and it should pass - but I wish it would pass faster!  In the mean time I put myself in that context as little as possible.

I am self-employed and am involved in the planning, managing and delivery of arts projects in the community.  We recently secured a large grant to deliver a county wide project.  This project has its own steering group.  One person on that group took a dislike to me when (as the top dog) I stood up to her and insisted on something she didn’t like so we stayed within the terms and conditions of the grant.  From that point on our relationship was unworkable, for her because she is stubborn and inflexible and for me because I was paralysed with anxiety.  In the end I had to recruit a new overall manager for the project and drop out of it completely because the anxiety was so intense I had had to start anxiety medication and I was at risk of becoming a danger to myself.

The Impact of BPD for me...

If you’ve read my introduction, particularly the bit that says, “ someone with BPD can have a long, happy marriage, bring up healthy balanced children and hold down a job” you’re probably thinking,

“So what’s the big deal?”  Therefore, I’m going to mention a bit of the impact just so you don’t get the wrong end of the stick.  This post relates to the following point from the diagnostic criteria. 

Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability or anxiety usually lasting a few hours and only rarely more than a few days).

Firstly, that long and happy marriage.  It takes hard work on the part of both partners to make a marriage work.  In a BPD marriage it takes the sufferer well out of their comfort zone and the partner needs to have the patience of a saint and love their husband/wife sooooo  much.

For example, my fear of abandonment and rejection is so great that I did not dare pursue a genuine relationship for more than 9 days (at which point I would coldly dump the poor chap) before it could happen to me.  I’m not quite sure how I broke this pattern (when aged 31) with my now husband – perhaps it was because he was also smarting from a rejection and we were therefore equally vulnerable.  Who knows?  What I do know is that when we made our vows:

I will love you in good times and bad.

I will love you when it’s easy and when it is not.

I will love you when love brings us close, and when love pushes us apart.

I will love you when my love is obvious and when it is hidden by my faults.

Please go on trusting me.

from

Patterns for Prayers and Christian Worship – Baptist Union of Great Britain

Oxford University Press, 1991

This has had to be the mantra of our marriage.  For example, if Joe (husband) should sigh when washing the dishes I will often hear,

“Lazy woman – she should be doing this.  I’ll be better off without her!”  Another time he will affectionately tease me.  One time I will laugh and tease him back, another, (and I don’t know which until it happens), I will be deeply hurt and believe that he must hate me.  I can wake up in the morning wishing I had died in the night then take my daughter at school where another parent may smile and be friendly, my mood will swing and I’ll come home singing, cheerful with a host of good intentions for the day.  An hour later the postman might bring a bill that we will struggle to pay, my mood will swing and the pointlessness and futility of trying to survive in this culture will overwhelm me and I will be back in the depths of despair.  These frequent and extreme mood swings are painful and horrible for me to cope and deal with, but they are equally awful for Joe to bear.  He watches it happen, helpless to stop it and stuck right in the middle of my stress, angst, fear, tears and irritability.  He supports me to stay safe and is her confidante when my daughter is confused and bewildered by my emotional roller coaster rides. 

These beliefs, thoughts and mood swings cause me much fear and distress and I am likely to fall back on my old friend / coping strategy of self-harm.  And before you jump to conclusions that this is manipulative and attention seeking behaviour, it is not.  I managed to keep my self-harm coping strategies secret right through my teenage years till I was 39 and the pressure of holding life together got too much and I asked my GP for help. 

The other side of all this – I mean, he would be mad to stay with me if that was the whole picture.  I offer him compassion and support when he is down.  I understand when he gets ignorant criticism and rejection from the people he works to care for and support.  I allow him to have bad days, because boy do I know what it’s like!  Those vows are a two way street – we meant them then and still do today. 

Useful Background Information

I guess if I’m going to write about how BPD works out in practice in my daily life – and how I overcome it and recover (which is my ultimate aim), it will be helpful for any reader to have some understanding of the official criteria used for diagnosis.  To this end I provided a link to a helpful site for sufferers and carers.

http://www.bpdworld.org/

I’m thinking that every now and then I will take one criteria and explain, with an example, how it relates to me.  It’s different for most BPD sufferers – well it’s obvious really.  To be diagnosed you have to meet five criteria out of nine.  I can’t do the maths but I know this means there are hundreds of combinations of criteria that can lead to diagnosis, added to the complexity of unique human beings, and the possibilities for how it shows itself in practice are enormous.  This means even the experts don’t have it sussed, and everyone who has anything to do with anyone diagnosed with BPD is always a learner, including the one with the label.