“Indecision”

I still remember clearly my own struggles when I was perceived to have BPD (EUPD).  How hard it was to get people to listen and how often, when they did listen, they simply put whatever I said into a box that was already neatly awaiting my words.  I am aware that people who have, or are perceived as having, PD are routinely given this same treatment.  I am aware of this because of the experiences of my friends on-and-offline, and also because of my interactions with professionals, as a professional.  It’s amazing what people will say to you when they have no idea who’s listening.

So, from multiple angles of experience, here is another thing I have noticed about the ways in which people with PD are often viewed.

Professionals often think that one of the markers of PD (and, to a lesser extent, of mood disorders) is wanting to change care providers (whether care-coordinators, therapists or entire care teams) frequently.  This is seen as evidence of the fickleness unfairly attributed to people with BPD; or as evidence of a wilful desire to destabilise the team dynamic of professionals involved in their care; or of ambivalence, uncertainty, and the inability to make important life decisions.  Or this old chestnut- it’s a sign of being manipulative.  Of course.

Here’s another way of thinking about it.  In what other situations are we expected to put up with a service that is inadequate or, for whatever reason, simply unsuitable for us?  I’m planning to change my mobile phone service provider when my contract is up this winter.  In the grand scheme of things, my data allowance is of minimal importance (even to me).  Yet it is accepted- even expected- that if I experience even the least dissatisfaction with the service after several times of trying to “make it work” (if that!)- then I should change it.

Given this widespread acceptance of people changing services when a service doesn’t suit them, why does a similar understanding not then apply to people experiencing severe and enduring distress?  Surely, by contrast with me finding my phone company unsuitable, it is much more crucial for a person needing help to ensure (within the limits of what is available) that the service is appropriate.  Changing care-coordinators isn’t always an expression of “liking” or “disliking” someone (come on, let’s not take things so personally!) but a matter of finding someone it’s comfortable- or the least uncomfortable- to be supported by.  Granted, this can be frustrating for care providers when needs/ wants have to be accommodated by overstretched teams of overstressed people.  That’s understandable.  I empathise.  But that is absolutely not the fault of the person seeking help that it appropriate and suitable for them.

I also understand that, as within any group of people, with or without any kind of “disorder”, there will always be those (extremely few) who “play the system”; those who actually are indecisive, and those who can be straight-up disruptive.  But associating these behaviours or attitudes solely to those with a diagnosis of PD, based on your subjective experience of what you perceive to be their “manipulation/ splitting/ indecision”, is unhelpful, discriminatory and often inaccurate.

Further, people who have experienced trauma (which many people with a PD diagnosis have) may experience issues with trust towards those in a position of either “authority” or “care.”  Considering that trauma quite often involves the abuse of authority by someone who is supposed to care, it isn’t actually difficult to comprehend that someone who has experienced trauma might display a confused (and confusing) attitude to those that they perceive to be in a similar position.  So yes, the desire to change care providers might be symptomatic of trauma (with or without a diagnosis of personality disorder)- but not because the traumatised person has some perverse desire to manipulate, cause chaos or upset people.

When I notice these negative attitudes towards people with PD, I try to challenge them.  When I notice a negative myth about PD affecting my own views, I stop myself in my tracks and correct it.  It’s impossible to offer positive and meaningful support to someone you have already second-guessed as being obstructive, manipulative, or unwilling to work with the (limited, sometimes inadequate) resources that you have.

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Where Stigma Lies

When I was perceived by psych services to have EUPD (BPD)- and I say perceived because this was never a formal diagnosis; rather, it was the perception of some nurses based solely on their experience of my self-harm- the way I was treated was disgusting.  I was occasionally refused treatment, being told that “hospitals are for really ill people.”  I was told that “if you were really suicidal, you wouldn’t have told us/ you would have done it by now/ we couldn’t stop you.”  I was called an attention-seeker, to my face, by a nurse at A&E.  Add to this the pervasive and deep-rooted opinion that being “just” an “attention-seeker” meant that all attention should be withdrawn from me, and we had a real problem on our hands.  To me, that problem was the brick wall I faced trying to make myself heard.  To them, that problem was me.  To them, self-harm was the only tick-box they needed to fill, to slap on me a diagnosis of which I actually had almost none of the other symptoms.  And to them, having ticked that box meant that they could rest easy in the knowledge that They Had Done All They Could Do for someone for whom (they assumed) nothing much could be done.

I heard a “joke” once, one of the very unfunny variety.  “How do you treat a person with BPD?”  “Refer her.”  This is offensive in so many ways but it does capture the sense of walking in and out of a revolving door that I experienced, and that I know is experienced on a daily basis by people with a diagnosis of PD.  I see this played out on my Twitter feed, on my WordPress reader, and in conversations with people in my day-to-day life.

Someone tweeted recently that the names of personality disorders basically just list things we don’t like (emotional instability, narcissism, antisocial-ness) and create diagnoses from them.  I read once, I don’t remember where, a psychiatrist admitting that “diagnosing a person with personality disorder often means there’s something about them that you don’t like, but you can’t put your finger on it.”  This is part of why there is such a negative perception of people with diagnosed personality disorders among professionals.  It is also why I think it is important to pay attention to the language used when talking about mental health service users.  The stigma is in the language.

It’s also not OK to (randomly) decide that a person needs to meet 5 criteria to fit a diagnosis, but then base their diagnosis on just one of those (in my case, this was self-harm, I know others have different experiences).

And please note that I in no way mean to minimise the experiences of people who have a diagnosis of PD, with which they actually agree.  I’m not saying that PD isn’t a “real” diagnosis.  I only mean that we need to seriously think about how and why PD is diagnosed, and what it means for the individual in reality.  If PD is used as an excuse to withdraw help, rather than referring to specialists for help, then it is not a helpful diagnosis.  If people with PD continue to be stigmatised because PD is seen as something we (a) can’t change, (b) don’t like and (c) would rather not pay attention to, then we have a serious problem on our hands.

We have a serious problem on our hands.

 

 

One of the B-P disorders

The doctor I saw in hospital implied that I might have Borderine Personality Disorder (http://www.mind.org.uk/information-support/types-of-mental-health-problems/borderline-personality-disorder/#.UzNT0fl_smQ) as well as Bipolar Disorder (http://www.mind.org.uk/information-support/types-of-mental-health-problems/bipolar-disorder/#.UzNT_Pl_smQ) . 

It isn’t the first time that the subject of having BPD has been brought up with me- far from it.  But now, with what I thought was a fairly stable Bipolar diagnosis, they want to add the BPD on as an additional and I know what it means.  Because whatever they say, whatever the truth is, MH professionals use BPD as slang for won’t get better. 

(I know, by the way, that that isn’t the case.  I know that with proper treatment and support people with personality disorders can and do get better.  And I, unlike many MH “professionals” I understand and empathise with it as a valid and serious illness.  I point this out because I don’t want it to sound like I am slating BPD, or its sufferers, just because I don’t have it.)

But I don’t think that I do have it.  Outside of hypomania, I am not impulsive.  Outside of depression, I do not experience intense negative emotions without reason.  My relationships are not intense, unstable or short-lived, not even my relationship to myself.  The romantic relationships I have had with the closest symptoms to BPD relationships, are the ones in which my partners have been mentally unwell and, in at least one case, had a personality disorder herself.  Self-harm is about the only symptom I have of BPD.  When I am fine, I do not self-harm.  

I know, in my case, that BPD is being used as shorthand for “we have seen too much of you.  Why aren’t you better?” and “You self-harm, which is problematic for us.”  The Crisis Team I saw after breaking my leg said that they thought “years of psychotherapy, rather than a hospital admission” was what I needed.  They said this after an interview during which they very transparently assessed me for BPD in the eyes of their minds.

I, meanwhile, feel sick with worry.