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.

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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.

 

People

A few years ago, I got chatting to somebody on a mental health forum online.  We exchanged poems and kind words and, in an online-only kind of way, we became almost close.  I didn’t hear from her for a long time.

Yesterday I chanced upon the site where we met whilst looking for old poems.  I posted a message on her last thread to ask how she was.  I received a message from a moderator to let me know that she had passed away at the start of this year.  From the messages posted, I can more or less conclude that she died from suicide.

I feel so sad.  Although I never got in touch for such a long time, I did think infrequently about her and wonder where she went.  It seems I only just missed speaking to her again, though this year is already halfway in.  All I can do is hope the best for her loved ones.

*

Recently, I made over 700 followers on this blog.  It feels amazing to have reached so many people.  Twitter, too, is proving fruitful in terms of furthering the small online mental health community I have around me.  Because that’s what it is, what we are: a community.  We look out for each other.  Drop messages.  Tweet across the Atlantic.  Pop cyber-hugs on the end of blog posts when we don’t know what else to say.  It is something I feel privileged to be a part of in my small way, something I am proud of.

Today’s sad news makes me all the more aware of how real the people are behind their words.  How concerned we should be, how we should look out for each other.  That’s why the mean comments about attention seeking upset me so much before- you never know how much sadness is really lurking behind another person’s seemingly throwaway words.

So this is a sad post, and a happy one.  I am happy to have known that person.  I am happy to be in touch with all the people I have come into contact with through WordPress, through Twitter, through whatever other sites.  And I am grateful.  But I am also very sad.

 

Triggers and Strengths

I have been more sensitive recently.  More easily hurt, as though I were covered in small wounds and other people were salt.

As a consequence of this, I have found more things triggering.  I can’t shy away from those things that trigger me because it is my job to deal with them.  So I have struggled at work, struggled to listen to the high emotional frequency in the air, struggled to listen to the ache behind other peoples’ words.  Struggled, in truth, even to get up in the morning/ afternoon (shift-dependent).

Things happen at work that inevitably trigger me because I have shared experiences with others.  Because others are not always as empathetic as I try to be in dealing with the problems faced by residents.  That hurts me because I think of how they would perceive my own struggles and I know, overwhelmingly, that their perceptions would be negative.  I become angry, I fight not to become jaded.  It’s hard.  every.  Single.  Day.

A GP prescribed an antidepressant to which my mind and body reacted very badly (I looked/ felt too stoned to go in to work), so I am waiting for a referral to the psych services of North West London.  They said it will take about a month.

Along with this have come negative thoughts and feelings, inwardly directed.  I struggle with this becomes I am no good at this.  I am triggered becomes I must act on this.  Sometimes my thoughts are loud enough to wake me in the night.  Sometimes I drink to blot them out, only to find they become more insistent.

I am coping but I am not coping well.  My coping strategies are not healthy ones.  My thoughts are not always reasonable ones.  My attempts to thwart the thoughts are often thwarted.

I drink to drown the dreams that died of drink, is a thought that cropped up in my head one day on the Tube.

And so, I have been trying to come up with something positive.  This is what I have come up with:

I am strong.  I may not feel it (I often don’t feel it) but I am.  I have an unwavering drive to survive, despite not wanting to at times.  I make efforts to stay safe, even when staying safe seems the least viable option.  I struggle… but to struggle is better than to give up.  I think of all the times I “failed” to die and try to see them not as failures but as successes: I am alive.  That is beautiful and I cannot dispute that.  I think of the relationship I am in, of how wonderful it is, how I have fought to maintain it. I block out the memories of past disasters, to be dealt with a later time.

So for all that I feel weak by being triggered, and by hearing the thoughts that call me useless and pathetic, I have to remember that to mainly resist the triggers takes a strength I do not always realise I have.

I need to try to hold onto that.

More Attention Seeking 

Yesterday, my colleagues,  myself and some people from other services went on Self-harm and Suicide training. It was both easier and more difficult than I thought it would be. Easier,  because I wasn’t triggered and at no point did I feel I needed to leave the room.  Harder,  because the opinions expressed hit the nerves I knew they would.
“It’s attention seeking,” they said, referring to superficial wounds and people  calling ambulances, “pure attention seeking.  But you can’t say that to them, of course.”

Later on, I made the point that negativity is often associated with self-harm because of these very opinions.  It was a bold move and one that could have left me exposed.  But I felt it was the right move.  Almost exactly fifteen minutes later? “Attention seeking,” a colleague repeated. “That’s all it is.”  I sighed, though not audibly.  Sighed because my opinion meant nothing.  Sighed because, despite the trainer’s best efforts, this simple point was not sinking in.

The trainer herself made one grave error that made me shut off for a while.  “It’s common for people to say that people who really want to kill themselves don’t talk about it.   And that’s true…”  I was amazed.  This smart, empathetic woman cited the samaritans frequently- and yet ignored one of their major bustings of a harmful myth.  My colleagues looked pleased with themselves.   See?  I could hear them thinking.  Attention seeking.

I could have raised my hand and called her on it but I didn’t.

Sitting in that room with me, I know, we’re some sensitive and empathetic people, as well as several that had lost a loved one to suicide.  I wondered how they felt about these opinions.  Wondered if they were offended, or if they had quietly grown used to the myths and unpleasantness bandied about by others.  I have never lost a friend or relative to suicide and I cannot imagine how they must have been feeling in that moment.

What I do know is how I myself, having been a self-harmer and attempted/ planned/ seriously considered suicide,  felt.  Hopeless and angry and saddened.  Their thinking was beyond my understanding.  I didn’t want to scream or shout as I have at other times and this itself concerned me.  Have I resigned myself to the fact that to communicate the reality of self-harm to these people is futile?  Have I become inured to their way of thinking?  In becoming so, have I absorbed some of it to the point where some of my own empathy may ebb away?  I hope not.  I have built my image of myself on empathy, and to have it challenged was all but infuriating.

If I rolled up my sleeves and expressed these feelings, how would they react? “Oh we didn’t mean you,” they might say, through teeth gritted with disgust or embarrassment.   “You’re not an attention seeker.  It’s them.”  Us and them, us and them.  Again and again.

So I kept quiet and I believe my decision was wise.  But in this blog and among my friends and even to strangers, I will continue to fight for a greater understanding.  I need to believe that these negative perceptions can be overturned.  I am not sure that the greatest problem facing mental health service users is stigma (there are budget cuts, for example).  But it is a big problem,  a problem which in itself leads to violence,  inadequate care and shame.  I do not exaggerate. So yes, in my life,  I continue to fight and as I reach out to my audience I will battle against the stigma I faced today.

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.”