“No Filter”

It’s almost 12 months since the last time I smoked.  As the days draw closer to the 7th of January, I start to feel excited.  I think I’m going to make it.

I started smoking in 2013, on a psychiatric ward in Kent, in the rain and freezing cold.  The other patients offered me their cigarettes and I would say yes: to be polite, to be sociable, and for something to do.  Fresh air was looked upon with vague suspicion but smoking?  Smoking was something that could be understood.  And so I smoked.

When I left the ward, went back to my ordinary life and my MA, I decided to quit.  Who knew this nicotine thing was so addictive?

It snowed all that January, and I would smoke in  the back garden, listening to sad music and pondering life.  I felt like a cliche, a retrospective of stereotypical teenage angst, but it soothed me.  Given that I had been hospitalised for being suicidal, the health issues caused by smoking seemed the least of my worries.  Granted, I felt guilty for my new habit.  I felt worried about the state of my teeth.  But I also felt a relief I didn’t get from anything else at that time.

Someone told me smoking uses similar techniques to the breathing techniques they teach you for managing panic attacks, and that makes perfect sense to me.

Who knew I would live to do it for four more years?  Two hospitalisations later, I was still breathing in the smoke, exhaling slowly, like it was sacred.

This year, four days after my 30th birthday, I decided it was time to give up for good.  One day at a time.  It’s been a lot of days now and although the cravings do hit me, I don’t regret the decision.  And I don’t regret having smoked in the first place, either.  There’s no point.  People in desperate places make desperate choices, and I did.  And now I know I have the strength to do this, I have more faith in myself.

 

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Punishment

Two people (real people, but I can’t give details) were talking about the mental health system.  One mentioned that hospital had felt like a punishment, and the other took that literally.  “Oh,” she said, turning to me.  “I get it.  So hospital is like a punishment for the ones who don’t get it.”  I explained that hospital is for people who need more support than can be given in the community.  After several explanations she “got” it and I felt relieved.

And then I remembered.

I remembered how much, at the time, hospitalisation felt like a punishment to me.  That purgatorial state.  The way the nurses and doctors could be unkind, dismissive.  The way that I often felt I was there because “nothing else could be done” with me, that I was there because there was no chance of me getting better.  The loneliness, the restrictions on when I could see the people I loved, the constant pumping of medication I didn’t want (and didn’t think I needed) into a system undernourished by depression.  I could see why she thought it was a place for the hopeless ones, the last-ditch-attempt ones, the ones who were effectively being punished for being unwell.  Because at the time, that was exactly how I felt.

I saw through my own arguments, how weak they seemed in the face of the facts.  Even though hospital is a place for “getting better”, it definitely doesn’t always feel like that.  I understand why she took that comment literally, and I wish I didn’t, and I wish she didn’t have to.

Predestination

In an alcohol support group once, I heard a woman say that her daughter seemed like she would be “one of us” when she got older.  Her daughter was six.  She had, said the woman, “all the tell-tale signs.”  None of these included interest in alcohol, or any signs of addiction to anything else, from video games to jam sandwiches.  No; it was obstinate behaviour, wanting to have her own way a lot, being selfish and thoughtless.  Things I would have thought fairly normal in a six year old, and better dealt with by telling her off/ encouraging better behaviour, than by labelling her a premature alcoholic.  Yet this woman genuinely believed that her daughter held the seed of addiction within her, and would grow up to be like her mother.

I’m well-versed in the fact that addiction can repeat through generations (whether through biological leanings or learned-behaviour) so I’m not saying that it was wrong or stupid for this woman to have concerns about her daughter’s future well-being.  I am saying that, in structuring the idea of The Alcoholic as this person with specific and immutable characteristics (which could actually be possessed by anyone, and to varying degrees), she was attributing to her daughter a serious problem that the girl could have no way of knowing whether or not she had.  All because she was stubborn about the kinds of toys she wanted to play with. I can’t help but wonder if, by reinforcing (explicitly or implicitly) this kind of negative perception of her daughter, the woman might end up producing self-doubt in the girl before any signs of a problem are present.  Prevention is better than cure, sure, but there are better ways to prevent than to scare-monger and to stereotype.

This was not a solitary concern- others nodded, agreed, and shared similar thoughts.

This is one of the reasons I stopped going to such groups.

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.