“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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PIP: However

Today I had my assessment for PIP (Personal Independence Payments- a benefit you can get in the UK for a physical or mental health condition, regardless of whether or not you are working).  The man who carried out the assessment was kind and polite; at no point did he make me feel bad about my application.  However, there is always a however, am I right?

However.  The questions he was given to ask me were inadequately phrased for the nature of my condition.  Bipolar is episodic: that is to say, I experience symptoms of depression and hypomania in episodes. That means that tasks I can carry out in the “euthymic” (“normal”) phase, I struggle with for blocks of time when I am unwell with either a high or a low.  The questions are often phrased in ways like this: “how many times a week do you need encouragement to cook/ eat?”  This then becomes difficult to answer unless dividing episodes by 52 (to account for every week of the year) and then coming up with a weekly average, thereby effectively lying because it is not every week that I experience those particular difficulties.  The questions do not take into account that illnesses can fluctuate- not just within a week or a few days, but for blocks of time throughout the year, interspersed between periods of being “just OK.”  So I don’t know if I will get PIP or not based on my honest answers and attempts to explain the nature of bipolar. Should I get PIP?  If it is for people with long term conditions impacting upon their everyday lives, the answer has to be yes.  If it is based on how many times a week I am impacted by my condition, it has to be no. I think they need to rephrase and rethink, not because they are trying to outwit people or catch them out, but because they are not taking into account the fact that myriad illnesses manifest in ways that do not meet the criteria if they are assessing on the basis of impact throughout any given week.

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.

Truth-telling Time


I promised to be honest on this blog, a long time ago.  So here’s the truth.  I’ve been going through a hard time lately.  Various mental health symptoms have shaken every part of me, to the point where I’m not sure where my outline is.  Though I hate to admit it, I need the medication I refused to continue taking back in January.  I’m “welcoming” back the sleeping pills, the medication, the visit to A&E, the interventions I’ve been avoiding like an actual plague (bubonic/ zombie-creating/ whatever).  I’m torn (again) between these two things: (1) the medication may make me less like myself but (2) I can’t be myself if I’m not really surviving.  If I actually, literally, don’t survive.

I haven’t blogged because I feel like a hypocrite, who gives out advice about how to cope with mental distress, but actually refuses medication and becomes really, really unwell.  And although I’ve spoken again and again about how mental unwellness is “nothing to be ashamed of” I have been deeply, deeply ashamed of having fallen back into the trap it has laid me.  I feel like a total mess.  I have some great support around me, and without that support, the place I’m in would be a million times darker, even though that feels impossible.  I’m exhausted but I’m fighting.  I don’t have some inspirational sentences to draw from that, because I’m not inspirational.  I’m just medicated and moody.  Needy.  It’s an embarrassment I can only overcome enough to write this because even though it’s rubbish, I’m hopeful someone, somewhere, will feel slightly less alone because they feel like this too.  Even that seems unlikely right now.

 

Peace & love.

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.

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.