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.

Psychosis

Today, I spoke to a nurse at the Central Access Point.  We talked about how I have been (which isn’t great) and then he asked me, given the medication I am on, whether I have ever experienced psychosis.  I said, not really, but I’ve been paranoid.  And he asked me to describe my experiences.

I described two.

1) When I lived in Kent,  I once went into my bedroom. I felt anxious and shaky. I saw something vibrating in the corner of my eye and when I looked, I realised it was my red suitcase.  I unwillingly opened the suitcase, and maggots spilled out.  I raced from the room, only to realise minutes later that the maggots did not exist.  I had an utter conviction at that point that if I told people certain things, someone dear to me would be killed.  Quetiapine and a night at the university’s nursing station were the suggested remedies for this.

2) At 23, living in Edinburgh,  I worked as a cleaner at Murrayfield stadium.  One day, feeling a little distressed and unsteady,  I went into work.  I was cleaning offices that day and I felt as I walked in that everyone had been talking about me.  I didn’t even know these people.  I was frightened.  In the next office, I felt certain that the people in the first office had been communicating with those in the second, either telepathically or on the phone (I couldn’t be certain which).   Their smiles made me afraid.

The nurse I was speaking to paused for a moment.   “What you’re describing, ” he told me,  “are real psychotic experiences.”

This, in turn, gave me pause.  Throughout my life I have had brief experiences like these.  Unwilling to appear dramatic, or to make mountains out of molehills, or to compare my own experiences to those of people I considered much worse off, I had never termed them psychotic experiences. I always shrug them off as nothing. Though I was put on the Quetiapine and subsequently aripiprazole, I had convinced myself that these were prescribed to me purely for their mood stabilising properties.

Yet, I can’t say truthfully that I am surprised.   His words, which, surprisingly,  nobody had ever used on me before, resonated.  They made sense of something I have avoided.   I have heard voices.  I have held strange beliefs.  I have known the earthy taste of fear.  Those experiences were what they were.

I write this because, like many people, I  feel frustrated by the popular, sanitised narrative of mental illness.  The kind characterised by the slightest aberrations or diversions from “Normal”.  The kind in which a person recovers fully.  The kind in which We Are Not Scary…  because the thing with scary people is that they are usually scared people.  When the world stops making sense to you, it is terrifying. This is why psychosis is one of the parts of mental illness that frightens people most- we assume we have such a tight grip on our own solid realities that any loosening of that grip seems a terrible thing.

What I mean to say, is that I have endured some really scary things.  I want people to know that it happens.  That The Scary People can wear “Normal” faces too.  I do.  That if you are looking (but really looking) The Scary People are not Scary People. At all.  I know, because I am one.

The Politics of Scars

 

At work, I keep myself covered up.  Still, there are the occasions when my sleeves slip up and I wonder whether anyone- staff or resident- has noticed.  Nobody has ever said anything but I have my defensive responses at the ready:

What do you think happened?
Well you know [insert resident name]?  I used to do the same.
It’s nothing to do with you.
I did battle with a tiger.
[burst into tears]
It’s a long, boring story.

I have no idea, if it came to it, which of these things I would say or do.  I also have no idea what the response would be.  There would probably a lot of “whys” and so on.  Probably a lot of judgement, too.  You would think that there was less judgement when working with people with mental health problems.  There isn’t.  My workplace is as judgemental as any other place. Sometimes more so.

*

Summer.  Both at work and outside of work, summer has always, always, always (we’re talking sixteen years of always) been a problem for me.  I want to wear short sleeves, do what other people do, look how other people look.  But the truth is I don’t- will never- look how other people look.  In certain situations (work, certain family gatherings, meeting family of partner) it is basically the smarter thing to stay sleeved (and wearing long trousers).  The thing is, that starts to seem unusual as the year grows hotter and hotter.  People start to ask, and the excuses tend to get more and more bizarre (“I’m cold,” I tell people as sweat starts to bead at my hairline).  Truth be told, I am dreading the hotter months at work because I don’t know how long I’ll be able to lie.  People have a terrible habit of intruding on personal space.

*

I am planning a wedding (yes readers, you heard it here first- Becky Bee is engaged!)  Yet I have fears around buying a dress.  Why?  Because I want a long-sleeved dress to cover my arms.  Because I want a short-sleeved dress because I have seen some I liked.  Because I don’t want people looking.  Because I don’t care if people look.  I don’t want my partner’s family to thing that she is marrying some kind of a crazy (although, of course, she is).  And I don’t want my own family to feel embarrassed/ surprised/ hurt/ whatever.  But I do want to be able to choose a dress that I love because I love it, and not because it adequately covers parts of me of which I am ashamed.

*

What is it that fascinates/ horrifies/ alarms/ disgusts people about the scars of self-harm?  I know for many people it is simply inconceivable that a person would want to hurt him/herself.  It doesn’t make sense.  Sometimes even I, when I think about what I’ve done, feel a kind of detached disbelief.

But as M (partner… fiance) always says: every scar represents a story.  A story where you might not have made it, but you did.  When someone asks, you can say “I fought a long battle with myself, where I could have lost, where I could have failed to make it through, and these are my battle scars… because they remind me that I made it.”  And, she says, “you’re my tiger.”

Bipolar II

The sub-category Bipolar II was created in 1994, by a man named Allen Frances.  Imagine that- my diagnosis is younger than me.

There are many criticisms of the DSM and one of them is that, in its various incarnations, it has created a “false epidemic” of mental illness.  By adding new disorders and subcategories it has, it is argued, medicalised many of the normal emotions of everyday life.

Sometimes I feel as though bipolar II is belittled, both in terms of the minimalisation of its severity and in terms of some people thinking it isn’t an illness at all, not in its own right.  In turn, when I am depressed, that makes me feel guilty. So, my diagnosis isn’t even a thing.  So, why take medication? Isn’t it normal to soar and fall?  Isn’t that what life is?  What if, after all, I am drawing resources away from the people who really need it?

But I am brought out of this by the very depression that leaves me guilty in the first place.  Because it isn’t normal.  It isn’t normal to feel suicidal and it isn’t normal to have your thoughts race at fifty kilometres an hour, or to sleep four hours in two days for two weeks running.  I am not a little off-kilter, not “just” suffering from the stresses of the modern world.  When I am ill, I am ill.

I have to admit scepticism at the ever-expanding catalogue of mental illnesses and at the number of people diagnosed (a study showed that children born towards the end of a school year are many times more likely to be diagnosed with ADHD, because nobody had taken into account their relative immaturity).  But as a sub-category myself, who am I to judge?  If a person can put their finger on a diagnosis- even one whose creation seems arbitrary- and find it fits them perfectly, then they should probably try the recommended treatment for that disorder.  I guess.

One thing I do know is that my medication works for me.  Call it a placebo effect if you like.  Call it whatever.  But as they say, if it ain’t broke don’t fix it.  Psychiatry may well be broken but I’m not, and in part that is due to my treatments.

Perhaps I should stop reading up on placebo and the failure of psychiatry.  Perhaps it is making me unduly paranoid about diagnoses and treatments.  I’m a curious person, though, and I like to read up on those things which affect me.

One thing I will say, is that I would never scoff at another person’s mental distress.  I have slipped through cracks into misery and it is not a pleasant place to be.  Bipolar II may be younger than me, but that doesn’t mean it doesn’t exist. 

Mental Health Awareness Week I: Reactivity

A friend of mine once made a suicide attempt.

Afterwards, a nurse asked my friend whether the suicide attempt had to do with “a fight with a boyfriend, or something.”  In the week that followed, my friend was asked this on three separate occasions.  (As an aside, I wonder whether a man would have been asked that same question so many times)

This makes me want to say two things:

  1. Often, depression is reactive (a response to life events).
  2. Often, depression is not reactive.

Of course, many people with a mental health problem will tell you that there are triggers for a relapse (just as many people, with or without a mental health problem, will tell you that they have triggers for their moods).  But many times, there may be no (at least obvious) trigger for an episode of depression, or psychosis, or (hypo)mania.  Just as mental illness doesn’t necessarily stem from trauma, a suicide attempt isn’t necessarily a reaction to a circumstance, or set of circumstances, that contribute to a person feeling suicidal.  So for my friend (who was not actually experiencing “trouble with a boyfriend, or something”) there may or may not have been other triggers that led her to be in that situation.  The point is, it is important not to jump to conclusions about people and their mental health.

If we can’t get away from the big “why” (“why do you feel like this?”) we risk isolating people who simply don’t know why they feel the way they do, except that they do.  Putting pressure on someone to come up with reasonable explanations for how they are feeling is simply not helpful.  It could be that there is a trigger that someone doesn’t actually want to share with you.  It could be that they will share it at a later time, when they are ready.  Or it could be that there is no trigger– and that’s OK.  To be there for someone, you don’t need to know why, unless they need you to know why.  You need to know what they want to happen next and how you can support them.  You need to know when is the time to intervene and you need to know who they want to be involved.  You need to know where they’re at in terms of how they’re feeling and whether they’re in danger.  But you don’t always need to know why.

A-Z Challenge: U is for Understanding

At a recent training day we were given a fictional case study to consider for risk assessment.  Consider this:

A young woman of nineteen cuts her arms.  She cuts them with razorblades, on the inside of her arms.  She uses clean blades.  She usually uses bandages.  She has had steri-strips, but never a stitch.  What should our risk assessment say?  What is it that we are trying to prevent?

“Suicide,” one person said.
“No,” said the trainer.
“More self-harm,” said another.
“No,” said the trainer, “actually, the fact that she self-harms is none of our business.”
There was a long, awkward pause while everyone got their heads round this and considered what the right answer might be.
“Accidental death,” another person said.
“Yes,” said the trainer.
Kudos to that person.  I hadn’t guessed it.

There followed a plethora of further questions.  How could a self-inflicted death be accidental?  If she didn’t want to die, why was she cutting the insides of her arms?  In fact, why cut anywhere at all?  What is the difference between the risk categories of self-harm and suicide/ suicidal ideation?  Was it all for attention?  Why wasn’t it our aim to stop her from self-harming at all?

Throughout, on the inside, I was screaming: why don’t you get it?  What exactly is so hard to comprehend?  How can you even be in this job if you don’t know?  I felt colour in my cheeks.  I felt both exposed and annoyed.  Compelled to speak but determined to stay silent.  I stayed silent.

Later, calmer, I realised that I had been unfair in my thoughts.  After all, they were asking questions to try to better understand.  At least they were asking the questions rather than passing quiet judgements.  And besides, it can be really difficult to understand something that you yourself have not experienced.  I have always been an advocate of the “Just Ask” argument when it comes to myself and my mental health (ask me how I am.  Ask me what bipolar means.  The worst I can do is refuse to answer!)  Yet there I was, getting prickly with people for asking simple questions about a topic they did not understand.

I wrote a while ago about how, until quite recently, I had found it very difficult to understand anxiety (in terms of the disorder, the day-to-day level of anxiety that some people experience).  I had never been anxious in that way, certainly never been brought to panic, and though I sympathised and tried hard to understand my friends with anxiety, I had no real idea of what anxiety even meant.  Until I experienced it myself.  Similarly, I once had labyrinthitis.  That was the only way I could understand what my friend, with Menieres disease, was really going through.  A short-term experience of its symptoms lent me a better understanding when I learned about her illness.  I had to be unwell: physically unwell (in the case of labyrinthitis), or mentally unwell (in the case of anxiety), to understand what another person experiences every day.  And it was scary.

It doesn’t always take experience to develop an understanding.  There are a lot of things for which I have empathy, even if I have never been in the other person’s shoes.  Probably some of the people at training, the quiet ones, could understand self-harm.  Maybe the fact that the woman’s self-harm was none of our business made sense to them. Maybe some of them even understood from experience.  I couldn’t tell you; I don’t know; I cannot judge.

It was so easy for me to go against what I said before, to get angry with people for asking about the experience of self-harm (and it wasn’t even me answering the questions).  So easy for me to be judgemental in judging others for being judgemental.  I think it was partly because the subject had upset or embarrassed me.  I think it was also because it brought up things that I myself had not understood until now: that sometimes, my self-harm had crossed over into suicide attempts/ ideation, and I had written it off as “just” self-harm because that was what it looked like on the surface of it.  And the converse, that had my non-attempts ever killed me, it would have been “accidental death” and not suicide.  These are things I had never really considered, things that I had not completely understood about my own life with self-harm.  In getting angry with people for not understanding, I was masking the fact that there were things I did not understand.  I was probably annoyed with myself, too.

So I reiterate: do ask.  Always ask.  A lack of understanding is dangerous and when you don’t ask, is when things can get dangerous.  What you don’t know can hurt you.  What you do know, you can work with.  Don’t worry about people like me with occasionally thin skin.  Be brave; understand what you can and be honest when you can’t.  Whatever it is that you don’t understand: a word, a concept, a belief system: ask.  I will, too.

A-Z Challenge: Q is for Quest

Here’s a funny thing.  I was planning to write “Q is for Quest” for some time.  For the life of me, I couldn’t think of something to write, but I was determined that it somehow fit into the theme of “Q is for Quest”.  Then the other day, I was sitting with one of my customers (we call our clients customers) and she had some really cool nail varnish pens.  She wanted me to do the outlines of circles on her leopard-print nails, which I had just painted.  I said I didn’t want to, as I was scared I would mess it up.  She persuaded me to do it anyway and, once I had, she was pleased with the result.  “See?” she said, “you didn’t mess it up!”

And then?  “I think,” she said, “that it should be your quest in life to be less scared of things.”

I was really surprised that (a) she had picked up on my nervousness about messing things up and (b) she had picked the word “quest”- my word for my next blog post- and used it in a context that made sense to me!

I had had all these ideas floating around my head about Quests- a course I did on post-colonial quest literature, Arthurian knights, absent centres… and it hadn’t occurred to me, not really, to work out what my personal quest might be.

Is that it?  My quest- to stop being scared?  I think it might be.  I wrote before about perfection and this ties in nicely with that.  As I mentioned in my last post, I am no longer a perfectionist.  Perfection is no longer something I strive for, or crave, because I am learning to see the bigger picture.  But that doesn’t mean I’m not terrified of messing things up.  All the time: big things, little things, medium-sized things.  From a customer’s nails to my entire life, I worry that I will get things wrong and sometimes this even stops me from acting.  “I don’t want to,” you’ll hear me say.  “I’ll probably get it wrong.”  Sometimes this might not be inaccurate- I am, for example, phenomenally clumsy, so it is probably best not to hand me a stack of plates and ask me to carry them across a room.  Other times it’s unfounded.  I won’t want to be in charge of ordering a shower curtain because “I’ll probably get the wrong kind.”  Or to make certain phone-calls because “I’ll probably give the wrong details.”

As I’ve got older, these fears have become less restrictive but they’re still there in many ways.  I don’t refuse to make phone-calls (that is part of my job) and I don’t shy away from things like calling the bank (that is, sadly, part of adult life).  My fear of messing up even led me not to want a job because I was convinced I wouldn’t be able to handle it.  I have a job now and so far I have handled it fine.  But that doesn’t mean the fear isn’t still there, that strange old fear of screwing up.

The definition of “quest” is “a long or arduous search for something.”  In wanting to overcome my fear of getting things wrong, what am I actually questing for?  Something like peace of mind, I guess, a life where days don’t leave that unrest unsettled in my stomach (did I do the right thing?  Did I get it wrong?)

If it is my quest in life not to be scared of things, then it is my quest in life to find a balance somewhere between foolhardiness and terror.  That will be a long and arduous search, because the fear of getting things wrong is something I have known a long time- known, I would say, my entire life.  So, like many other things in this larger quest that can be loosely termed “recovery”, the quest for peace of mind- the quest to rid myself of that fear- will be long and difficult.  There will be mountains and dragons and flames and oceans, probably.  Me, armed only with determination. And of course, as I’ve said about “recovery” before, no true sense of an end-goal, no tangible destination.

Funny that it took a chance encounter with a customer and some nail varnish to make me aware that this was even part of my quest at all.

The nails, by the way, looked great.  We painted mine, too.

What’s your quest?