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.

Ways to Higher Ground

I haven’t posted to this blog for ages.  In fact, I haven’t written at all for months.  Truthfully—because I aim always to tell the truth here—I have been stuck in the realm of negativity.  It sounds odd (or melodramatic) but even the weight of a biro between my fingers has felt like too much of a responsibility to bear.  And so, at least in terms of the written word, I have stayed silent.  Or is it better to say, invisible?  For a long time, as a kid, if you’d asked me to choose a superpower I would have asked for invisibility.  But in the real world, outside fantasy, for me, that isn’t possible.  Whether or not I feel seen, my actions have consequences and impacts that ensure I am perceived.  It is up to me, like it is up to everyone else, to try through those actions to shape positive impacts, worthy consequences.  One thing I do that I know has some small impact is this blog so, in the spirit of growing visible again, I want (for the first time in months) to write.  To write honestly.

In the realm of negativity, I felt I encountered a split path.  “Two roads diverged in a yellow wood/ And sorry I could not travel both/ And be one traveller, long I stood” (Robert Frost).  I have stood here a long time.  Except, unlike Frost, I saw many splits in the path and for all I squinted through the yellow wood, I couldn’t see past the trees.  I still can’t.  I recognise (and thank) the fact that I have so many choices in my life.  But choice can also be overwhelming.  I feel overwhelmed.

I’ve always been a “big picture” person.  Take the mundane example of housework: I often feel like things are done when other people can (apparently) clearly see that they are not.  I notice the general gleam.  Others notice the smudge on the skirting, the dust in the corners.  It has its benefits and its drawbacks, this big picture view.  The thing with being a “big picture” person, is that you learn to see the picture even when there is none.  It’s a bit like doing a jigsaw puzzle.  Even though large chunks may be missing and the image may be fragmented, you know that this is temporary and so you hold in your mind a vision of the image that should be there and disregard the pieces that aren’t.  This is uplifting in some ways.  It lends hope because you know that no matter what, all these pieces (even the missing ones) are part of something greater.  On the other hand, though, it is impossible to go through life simply not noticing that there are vital things missing from the picture.  When you step closer, you notice the flaws and they can floor you.  That’s how I’ve been feeling.  Floored by flaws, unsettled.  A person without a plan.

I’ve been here before, in this wood with the diverging paths.  I’ve been here so often you’d think I’d have built a treehouse by now.  But I haven’t, so is it a wonder I feel exposed?  Is it a wonder I have the sense of having failed?

That’s it, though.  The old clichés, the crappy Facebook memes, are true: if I haven’t given up, I haven’t failed.  I almost gave up.  In almost doing so, I could almost have lost everything and yet… here I am.  Standing on shaky legs, sure, but standing nonetheless.  It’s bleak sometimes, it’s dark sometimes, it’s hard always, but I’m here.

I wasn’t going to write.  I was going to stay invisible.  And then, last night, I was giving another person subtle advice and as always when giving another person advice, it felt easy.  There’s time to figure things out, I said.  It’s not over, I said.  Nothing is ever perfect, I said, but that doesn’t mean things can’t be good.  It doesn’t even mean they can’t be great. I looked at someone else’s tangle of paths and I saw a multitude of futures in them.  It would be hypocritical, then, to look at my own and see none.  Really, I still can’t see my own clearly.  I am exactly as lost as I was before.  But there are ways out (compasses, maps, guidance).  Ways to higher ground from which, I hope, I will be able to see the bigger picture once again.

I Thought I Had Nothing to Say About Race

​I Thought I Had Nothing to Say about Race

When I was thirteen, I realised I was a lesbian.  My response to this, naturally, was to kiss a boy.  I’ll set the scene: 1998 school disco held at the Catholic Girls’ School, with boys as guests from a local private boys’ school.  One of the “slow-dance” songs- maybe even Celine Dion- was playing in the background.  At least, it appeared to be in the background, as the moment of the kiss had moved to the fore.  It was my second kiss, and not a very good one—a small group of girls had gathered to watch us and were making silly sounds.  Up on the stairs, presiding over us, was the headmistress, determined to pay us no mind as we were, in her words, just looking for attention.  If it’s what I was looking for, I certainly got it and not just for that night.  What I had earned myself in those short (but seemingly unending) moments, was a reputation.

Robert became my boyfriend for around two weeks after that.  As we had no way of actually seeing each other, our messages were relayed largely through mutual friends on the 248 bus.  After two weeks of “Robert says he loves you” and “Robert thinks you’re sexy” I eventually received the message that “Robert wants to break up with you.”  When I asked why, I was told “he said he only kissed you cos coloured girls are easy, innit?”

It wasn’t the first time that I had heard something negative to do with my race, but it was the first time I had heard someone in real-time use the word “coloured.”  My instinct was to laugh and laugh I did.  I laughed it off in the nonchalant way that you can only manage if you are covering hurt.  “Oh well,” I said.  I spent the next three years wishing my hair was straight and trying to live up to a friend’s suggestion that “I know you’re half-caste, but you’re more on the white side.”  Whatever that meant, at that time I wanted it to be true.  Surrounded at school by white girls with hair in varying degrees of flickable, I wanted to be like them.

After the Robert incident, I made it my mission to be unoffended by anything.  When we discussed John Agard’s “Half-caste” in class, I wrote an essay saying that, as a “half-caste” person myself, I didn’t care about the fact that the phrase wasn’t politically correct.  I wrote that it doesn’t matter what we call people and that the poem was taking offence where none was needed.  I think I got an A.  Whatever words people threw at me, I would grab in mid-air and twist like origami into jokes.  I was determined not to care.

When I was fifteen, I was walking with a friend along a high street, all in our grunge clothes.  A boy across the street, an obvious “trendie”, shouted out rudely to us.  “Half-caste idiot,” my friend muttered.  I realised in that second that I had taken offence but at the same time realised that if I voiced this, she wouldn’t understand.  I would cease to be her token mixed-race (sorry, “half-caste”) friend.  So I kept quiet.  I did my best to erase the offence and yet obviously it remains in my mind even now.

Nineteen.  I was living in Toronto, where I met and fell in love with a woman eleven years older than me.  We were watching the football.  “Stupid nigger,” she shouted at one of the players, spilling some of her drink as she waved her arms in the air.  “What?”  I said.  She brushed it off with some remark and I sat, quietly stunned.  I think it was the first time I had ever heard that word directed at an actual person.  Hours later she explained herself.  “I’m sorry, baby.  I was just angry.  And you know I didn’t mean you?  Anyway, your mum is white.”  I didn’t stick up for myself or the man on the screen, just nodded, smiled, accepted the hand extended.  I felt like a traitor.

At twenty-three, I was working in a pub for an especially sexist, racist, homophobic and generally offensive manager.  At one point, another company was looking to buy the place and two men came to survey it.  When they left, the manager said to the supervisor “did you see that Paki bastard?”  Afterwards, the supervisor came up to me.  “I’m sorry, darling.  He shouldn’t use that word in front of you.”  Always better at standing up for others than for myself, I simply said “no, he shouldn’t have,” and carried on with my cleaning.  I felt sad that that was all I had managed to say on the topic but glad that I had spoken at all.  By that time, I was so used to swallowing my offences that they no longer sat sharp in my belly but dull and heavy as stones.  I felt I was carrying around a weight but I couldn’t have said exactly what that weight was.  Now I am aware it was the weight of offence taken and never expressed.

For years, I thought I had nothing to say about race.  That I had never experienced discrimination and had no right to comment.  It didn’t feel like denial but like something I genuinely believed.  From five-year-old me wanting to be white like a Disney princess, to twelve-year-old me being ditched by that boy, even through to nineteen-year-old me hearing the racial slur that made me flinch, I believed I was immune to offence.  It wasn’t my fight.  I said that to myself and I said it to others.  It’s nothing to do with me.  For the first three years of university I avoided postcolonial literature like the plague, terrified I would end up being “typical.”  When asked where I was from, I invariably said either “London” or “my mum.”  I pointed out repeatedly that I had never actually been to Jamaica.  Always put the “Holland, Ireland…” out there first. 

I used to think, subconsciously I guess, that because of the long list of protected characteristics I possess (lesbian, non-white, mental health problems…), I had to be able to take a joke.  I didn’t want to be seen as part of the reason for Political Correctness Gone Mad.  I was like the girl in a group of guys laughing at a sexist joke, like the one black guy in a room of people tittering at some racial slur.  I was so determined to hold my own, so determined to not be offended, that I forgot I am rightly allowed to be offended by certain things. Without realising it, I spent a long time apologising for who I am.  I thought that un-offendable meant invincible.  I was wrong.

I no longer strive to make myself immune to offence.  I am able to express it and more importantly, able to feel it.  I no longer describe myself as “half-caste” or even “mixed race”; if pressed, I am “four quarters black and three thirds white.”  I don’t water myself down for people, or try to depoliticise myself: all bodies are political in and of themselves, and mine is no exception—why should it be?  All these experiences have shaped me, I couldn’t deny that.  But they don’t make me.  I won’t let them.

So I thought I had nothing to say about race?

I was wrong.

Addiction

Often, we are taught that addiction is something intrinsic to a person’s personality, to their nature and identity.  This is why the Twelve Step programmes refer to the stock character of The Alcoholic or The Addict, having defining characteristics that can be recognised by all people undergoing similar struggles.  In other words, a lot of the time addiction becomes not a behaviour, but an identity.  As an identity, it is harder to shake.  If you are, for example, an alcoholic, your behaviour will always be informed by this identity.  You will, as the literature states, never be able to drink “like a gentleman.”  Your character itself prevents this from being a possibility because it is a trait of your character that you will lose control after the first drink.  At least, if you’re a “true alcoholic.”

I am going to make a controversial statement here.

I was an alcoholic.

For many years, I drank to excess on an almost daily basis.  So often that I can actually count instances in which I didn’t drink (the time I had labyrinthitis, for example).  My behaviours were certainly those associated with alcoholism: I lied about my actions; I drank to excess; I lost control.

But I got better.

How I did this remains a mystery to me.  It’s as if one day I was tee-total through complete fear of the consequences of my drinking and the next… I wasn’t.  It wasn’t easy.  I had several “benders” when I went back to drinking at first.  I put this down partly to the addiction model itself: as I had been told I would lose control, and believed I would lose control, I did.  A self-fulfilling prophecy.  I also put it down to the fact that I wasn’t fully well yet.  In time, though, my behaviour changed.  I am able to drink in moderation- and I say this in all honesty, not lying to you, not lying to myself.

I know how much the disease model of addiction helps people.  I am not even denying that it is real. I only know that for me, it proved to be untrue: there was a way back.  This may be rare, but it is true.  Perhaps I was never a “true” alcoholic- but I fit all the criteria for one.  What I see now, is that it was behavioural.  An entrenched behaviour, sure, and an almost impossible one to modify.  But it wasn’t impossible.

I understand why some people never drink again.  I see that as a success story.  But for me, learning moderation was a major success too.

 

 

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.

 

 

Little Things That Kill

​In maintaining stable mental health, it is often the little things that trip us up.  I am about to run out of medication.  Have I ordered some new?  No.  This is a regular problem for me, one from which you would think I would have learned.  Yet I know it’s not just me- time and again on WordPress I read about other people doing the same!  Let alone remembering to actually take it once you have it…
For a long time after I left university, I refused to read my council tax bills.  They scared me so much that I would leave them, unopened, on top of the fridge.  Eventually, as is to be expected, I ended up with an enormous bill, some of which I wasn’t even eligible to pay.  It took a lot of untangling to eventually come to a conclusion about what I owed or didn’t, because by the time I got around to the untangling it had all gone very, very far.

These are just a couple of examples of things I hope I will one day be in danger of taking for granted.  Already now, I check my post regularly- even if it looks boring or scary.  I try hard to remember to order meds, though this is a true sticking point for me.  In other words, I try to exercise tiny amounts of what I once saw as “grown-upness” and now simply call wellness. Something I work hard at and am very grateful to have.

But please.  If you live with, or love, or know someone with a mental health problem, remember that the things you see as small or obvious may not be so for them.  Try to be as supportive as you can (my mum sorted out that council tax bill.  My partner reminds me to order new meds).  Don’t get frustrated.  Think about all the things you find boring or stressful or worrying, and try to understand. 

Above all, as ever, be kind.  Once you make up your mind to be kind, the rest will come naturally.