Identify?

Once when I was in hospital, a doctor (or nurse, or someone, I don’t recall exactly, I was ill) asked whether I “identify” with my bipolar diagnosis.  Later that week someone else said “I can see your diagnosis is something you  really identify with.”

I have really mixed feelings about what it means to “identify” with a diagnosis.  I know that psychiatry is not an exact science, so there is guess-work and a subjective sense of what fits where, and how.  So yes, in a sense, I do identify with the diagnosis of bipolar.  I recognise in myself the highs and lows, the behaviours, thoughts and attitudes that come with them.  Textbook.  And the acknowledgement of this, of my recognition, brings some positive results with it: more helpful prescriptions, a framework for treatment, and (the usefulness of this is underestimated) a logic within which others can read me.

On another hand, even if psychiatry is aiming at a pinata in the dark and hoping for a lucky strike, I’m not sure a diagnosis should be something you “identify” or “don’t identify” with.  Certainly, I can say when something doesn’t feel right to me.  If someone diagnoses me with an illness whose symptoms I cannot recognise in myself, I can definitely make the case for this not being my diagnosis.  This will hopefully lead to the results I mentioned above, re: treatment.

But some people don’t “identify” with their diagnosis- nor do they necessarily identify with any.  The pressure to hammer square symptoms into the round holes of diagnoses can lead to counterproductive outcomes.  For example: over-diagnosis of some conditions because some of the symptoms fit for many people and there’s nowhere else to put them; diagnosing people with an illness of which they have only one or two symptoms; abandoning hope for some people, assuming that their lack of place within the rigid structures available means that they have no illness at all (and that because of this, the symptoms of the now-non-illness need not be taken seriously anymore).  Not everyone “identifies” with a diagnosis, but that doesn’t mean nothing is wrong.

In addition, while I understand that psychiatry is inexact and sometimes a blunt tool for a fine operation, I think if you are going to use something as medical-sounding as “diagnoses”, you can’t afford to put that much emphasis on “identification.”  Nobody “identifies” as having a physical health condition.  And no, physical and mental health conditions are not the same- despite what people say, they are often not even similar- but if you are using the same language, giving the same weight to the same words, you need to have something behind those words.  Something that doesn’t just depend on whether someone “feels” like you might be right.

I know I have written before about how I “have” rather than “am” bipolar.  It might not seem like an important distinction, but the point I was making at that time was that recognising the signs and symptoms of an illness within yourself, doesn’t mean that these define you.  They may be important and have a big effect on shaping who you are, but this doesn’t mean that they are all you are.  The diagnosis, the illness, isn’t necessarily intrinsic.  But something not being an identity in and of itself, doesn’t mean that it isn’t tangible in real terms.  For example, I don’t think of myself as “identifying” as a lesbian.  I just am one.  It’s not something I picked and chose to call mine, like being a goth or an emo or a banana or whatever.  It’s something I consider intrinsic and ingrained, which would exist regardless of my own understanding of it (whether cultural or personal).  In the same way, I don’t think bipolar is something I “identify” with.  It’s something I think explains a lot of my symptoms, and for me it is a useful framework to work within.  However, this exactly the reason that I don’t think of it as something I identify with.  I have it, or I don’t.  The diagnosis is useful to me, or it isn’t.  The language of identification doesn’t belong in medicine of any kind.  Not from the same people who, when you “identify” as mentally healthy, take this to be a symptom of your illness.  No.  You can’t identify your way in or out of a problem.

 

A Memory (c.2004)

That day, I had a sudden, nervous, sick feeling towards the end of period 5 (History).  I had to leave because of the nausea and (hidden) the sudden, unexpected shaking of my hands.

When G told me she was leaving, I could have said this to her: that I had been feeling nervous all day, which was completely unusual before one of our sessions.  I could have expressed surprise.  At that moment, several choices were open to me and what I chose to say, when she told me she was leaving, was “oh.  OK.”

She tried to discuss it further, talk around my feelings about it, but I didn’t want to.  When she pushed too much I said “well, what do you want me to do?  Cry about it?”  At that moment, I actually saw hurt on her face.  Although I wanted to be clear that I wasn’t remotely bothered by her departure, I definitely didn’t want her to feel bad.  I felt guilty- but I was a teenager.  The stone had been cast, I could not take it back.  It was far too late to make amends.

As I write this, I suddenly remember the other conversation, two weeks or so prior.

She: So, I suppose what I want to say about what I said before, is that maybe I said it wrong, because I knew I was leaving…

As I write this I remember, clearly, what she said “before.”

She had told me that she was thinking about my “needs as an individual” and wondered whether I might be more comfortable seeing a black therapist.  I remember, clearly, my outrage at the time.  In retrospect, I can almost understand what she meant (or I hope this is what she meant): that, given my predominantly white school, it might be good to have someone “of colour”, outside of my family, to relate to?  Or was she just fobbing me off?

A couple of years before, I had a black counsellor for a few sessions.  “It’s hard to be mixed race,” she told me with all the authority of knowledge, but none of the honesty of experience.

I reacted to G the same way I reacted (on the inside) to the black therapist, though I respected G enough, and had been seeing her long enough, to at least partially explain my reaction.  What would be the point, I asked, in trying to “match my colour”?  Did she plan on looking for a specifically mixed race person for me to see, or would she just settle on any non-white?  Although I didn’t say this, I was quite upset because G was Irish- like my grandfather- and yet seemed to think I would feel more of an affinity with any black person, over a white person who shared my roots.  G backed off quite quickly after my outrage was expressed, saying it “wasn’t what she meant” but the feeling of being unsettled, the vague rage, was already there.

It’s funny, because this was going to be a brief piece about the way in which I chose- or chose not- to say goodbye to someone.  In the memory I had, I had skimmed the surface, overlooked the genuine and justified outrage I felt towards G as she said goodbye.  I had minimalised my anger, my real experience, and turned the situation into one that makes me feel bad.

It’s odd, the way memory works.

“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.

Resources

Recently, I was speaking with someone about what it’s like to know you’re not doing the things you feel you “should.”  We discussed the feeling that another version of you (an old one?  A future one?) is looking at you and judging you in your current state, thinking “what are you doing?”  I mentioned my own experience of unemployment, the ways that it impacted upon my self-perception.  I explained that although it’s hard, sometimes you have to remind yourself that you’re doing the best you can with the resources that you have.

As we thought about that idea, she told me it can be even more daunting to think about it that way.  Within the context of not doing what you feel you should, it’s a struggle to see what your best should even look like.  You start to doubt yourself.  Example: I usually cook proper meals.  At a low point (mentally, emotionally and financially) all I had was dried pasta and a jar of pesto.  And because I wasn’t feeling great, I didn’t even use those things.  So in a sense, I was not “doing my best” even within the confines of limited resources.  I wasn’t using those resources at all, but instead wasting them.  She told me it can be stressful to think about how you have so many resources but struggle to use them.  I had to agree.

What I realised then, at the exact same time as it came out of my mouth, is this: even if you have the material resources (that pesto in the jar, that pasta on the counter), your inner resources might not match them. You might have many things available to you: people to talk to, a safe environment, food on the table (or in this case, in the cupboards).  But if you lack the inner resources- motivation, confidence, self-belief- then these material, external resources, quickly start to seem useless.  At the same time that this is happening, you may begin getting upset with yourself, for having all this stuff and yet not making use of it.

Yet, in the same way that depression can strike a billionaire, with more material resources than most, you can lack the resources inside yourself to make use of the external resources the way you feel you should.  That word again.  Should.  The truth is that what you “should” do is your best.  What I am coming to believe more and more, is that more people are doing their best, every single day, with the resources- both inner and outer- that they have.

Frustrations of “positive thinking”

A million books (and quotes, and viral photos, and little inspiring trinkets) can educate you on how to “think positively” to make the most out of any given situation.  You can take deep breaths, you can chew each mouthful 32 times, you can feel the current of the air against your skin, you can embrace the moment, you can repeat, silently or out loud, any number of positive mantras.  And yet there remains a glaringly obvious hole in the theory.

“Thinking positively” will not actually get you out of a bad situation.  Sure, if missing the bus makes you feel like the world has ended, some breathing techniques and mantras and thought tricks might provide a temporary fix.  It will not help you to understand why a seemingly mundane event has caused such a drastic reaction, nor will it mysteriously re-mould time so that the bus was never missed in the first time.  But a plaster is better than nothing, at least until you can get the splinter out.

Which leads me to the point.  “Thinking positively” cannot bring a bus back to the stop you are now waiting at.  Taking deep breaths will not prevent you from experiencing excruciating pain.  Chewing 32 times will not cure you of depression. Feeling the air’s current is pleasant, but it won’t change your relationships with other human beings.  Repeating any number of mantras, silently or out loud, will not change your dead-end, minimum-wage, soul-sucking, alienating job and offer you the life experiences of your wildest dreams.  Life does not work like that.

If we are talking mental health symptoms and situations, “positive thinking” may temporarily (and yes, helpfully) remove you for minutes or hours from the feelings and thoughts you are experiencing.  Unfortunately, no amount of “positive thinking” and cognitive magic tricks are going to provide a permanent solution, nor will they actually address the problem beneath the problems.  Furthermore, mid-crisis, you most probably don’t need the added stress of thinking that you can’t even think right!  If you already know that your thoughts are not rational, you can’t fight them with rational thought, because you have already second-guessed what your “positive” side is going to say before s/he has had the chance to chant it.  It doesn’t make sense to think about your thinking when it’s the thinking about thinking that you think is causing you grief.

If we are talking other life situations (relationships, for example) then this “positive thinking” stuff can also be outright dangerous.  Take a person in an abusive relationship.  The advice should not be “concentrate on the image of the sea”, but “get the hell out of there, as quickly and as safely as you possibly can.”  No amount of thinking will save you from what is, quite correctly, perceived as a terrible situation.  Can you think your way out of poverty?

The “positive thinking” club puts the emphasis on the person experiencing the distress, taking away the onus from the contributing factors.  If you have had horrible experiences, and are told to simply “avoid triggers” or “count to ten” or “think about why this affects you so much” then you may feel as though you are being blamed for your own problems, which you did not actually create, having not actually chosen for yourself the horrible things you experienced.  You should not be focusing only on “thinking positively” but on processing and understanding what happened and experiencing the range of related emotions, which may or may not include an element of putting a positive spin on the process, but which certainly does not hold you responsible for your own pain.  Yes, the power to heal may be yours.  But if you are not able to wield it, it is not your fault, nor a sign of weakness or faulty thinking, that you have not yet healed.

Positive thinking, minus the scare quotes, can be an incredibly powerful tool.  This is particularly true when evaluating a thought that is influenced, not only by your mind/ thinking habits/ perceptions, but by your environment.  It can be very positive to learn to accept your body in a culture that continually tells you (most especially if you are female) that your body is somehow not up to scratch.  It can be positive to remember that worth is not measured by productivity, and productivity not always measured in physical output, in a capitalist society.  It can even be positive, despite my earlier sarcasm, to learn to focus on the small and the quiet things, to remember that in any given moment, nothing is usually especially wrong.  But you need to balance this with honest evaluation of what your actual situation is, and how you can make actual, real-world, literal, not Snap-chattable, changes if you need to.

 

Misconceptions

Recently, someone I know to be an otherwise compassionate and intelligent person made a comment that seemed to be minimising the seriousness of Bipolar II. The comment itself is not really important, and it’s possible that I read the tone wrong (although I did not mishear the content). The way it was made reminded me of a friend I once had who dismissed bipolar as a “casual illness.”  It wasn’t that the comment was made in an unkind way; it struck me as uninformed.  This surprised me, because it was not said by someone I would expect to be uninformed, and not said by someone I have known to be dismissive; yet the comment was both.

Essentially, the person suggested that Bipolar II is not a “serious” illness and doesn’t cause “severe vulnerability”, as compared with other illnesses which are much harder to “recover” from (my thoughts on “recovery” are available here and I believe, and have seen, that people can and do experience recovery from and within all sorts of illnesses, even those deemed most severe).  I hear this kind of thing a lot: “just” depression, “just” [insert any number of illnesses].  But in my experience, “just” depression, “just” Bipolar II, are things that can actually kill.  As in, quite literally, cause death.

What I wanted to say/ should have said/ didn’t say to this person, is that I don’t have the luxury of taking bipolar lightly. On more than one occasion, I have almost lost my life because of it.  On more than one occasion I have lost friends, jobs, opportunities, because of it.  I will probably be taking medication for the rest of my life.  I will always be sensitive to the changes in my mood, the way a sailor learns to be sensitive to the wind.  I cannot afford to take any period of wellness for granted, and  I can’t afford to be flippant about it.  If you can, then count yourself lucky, and educate yourself on the topic before you say something.  (The person, by the way, did acknowledge that there were things that s/he didn’t know about bipolar/ depression.  Which is absolutely fine, most people are not walking medical encyclopedias.  But if you don’t know something, it is probably better to do a superficial google browse before dismissing as casual the illness of a person you know has that illness, in front of that person).

I know where I’m fortunate, by the way.  I know that (especially at the moment, not being consumed by any particular mood) I am lucky, and I have zero interest in playing a game of comparisons.  I am also aware that some people are impacted much more severely by bipolar (I or II) than I am (currently).  My point isn’t that my particular mental state, at this particular time, is better or worse than that of anyone else.  My point is that it isn’t the name of the illness that should shape your perception of it.  “Personality disorder” or “bipolar” or “schizophrenia” or “PTSD” are all different conditions.  The severity of each varies from person to person- not necessarily from diagnosis to diagnosis.  No two people, with the same diagnosis, will be impacted in the same way by it.  People can and do have periods- even long periods- of stability within the trajectory of their illnesses of any kind.  Some illnesses have higher “recovery rates” than others, some have lower “relapse rates”, the likelihood of recurrence varies.  But you should never put the word “just” before anything.  It disrespects the experiences of the person with the problem.  It makes you look like you don’t really care.

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.