BPD and me

I want to preface this post with sending out some love to anyone who’s reading this who has a Borderline Personality Disorder (BPD) (also called Emotionally Unstable Personality Disorder) diagnosis.

I know that many people (including mental health professionals) will treat you differently because of this diagnosis. I have witnessed people with BPD being called manipulative for how they cope/ask for help, abusive for lashing out while overwhelmed by emotions which often stem from abuse they suffered in childhood, being told that they can’t be treated – that they will just have to learn to live with their illness (which, by the way, is totally untrue!), and just generally being treated like crap, both online, and by professionals in real life.

This is unfair in the extreme. Your illness is not somehow ‘your fault’ because it was caused by how you developed from childhood. In fact, that just means that it definitely is not your fault.

As for the stereotypes, I have never found my friends with BPD to be manipulative, or abusive. In fact, they have been completely the opposite, picking me up when I’m down, because they can relate.

I have to say, it’s not all doom and gloom. Some people feel like BPD is a good diagnosis for them. They feel they meet the criteria, and are happy to have something to explain how they feel/behave. But even if the diagnosis has felt positive, I’m not sure I know of anyone who hasn’t had a bad experience due to how they’re perceived because they have BPD.

So, this is the part where I say that one of the reasons I know how badly people with BPD are treated (especially by professionals) is that this diagnosis has been following me around for a while.

Despite only meeting two of the criteria for a diagnosis (you have to meet five, and most people I know would meet at least one), and not meeting the criteria for BPD treatment (Dialectical Behavioural Therapy (DBT)), I have had professionals tell me I have BPD repeatedly for the past couple of years.

This has changed their attitudes towards me. I have been treated with suspicion, I have had my crises minimised, and on one occasion, I was told that a member of the Crisis Team couldn’t do anything to help me, because I ‘just had unstable emotions and that was just how it was’.

The fact is, my emotions are very stable. Very stably low. That’s what depression is. I have flashbacks and nightmares which cause me distress, avoid things that might remind me of the trauma, and feel constantly on alert. That’s what Post Traumatic Stress Disorder is.

Unfortunately, because of my need to avoid things that remind me of the trauma, it’s only recently that I’ve been able to start talking about it, giving professionals a fuller picture of what’s wrong.

Still though, because of my propensity for self harm/suicidal ideation (one of the two criteria I meet), the ’emotionally unstable’ label has stuck around, like chewing gum on my shoe. (As an aside, if you are a young woman who has issues with self harm, you are much more likely to be diagnosed with BPD than men with similar issues).

Not wanting to rock the boat, I haven’t really said much when people have said I have BPD. But it…just didn’t fit.

So, at my last appointment with my (new) consultant, I ‘put on my big girl pants’, and asked him about it. He said that it was on my records, but that he had it as ‘under review’. We had a chat about it, and in the end he said that he was very clear that I had a ‘complex mood disorder’. Mood disorder because of the depression, and complex because of the trauma. So not a personality disorder, after all.

I finally feel understood, and like we can make some progress.

Marriage

they say:
marriage is the joining of
one man
and
one woman.

they say:
it’s been like this forever
why change things now?

they say:
the Bible tells me so.

they say:
gay people have rights anyway
just in a different way
(though if I had my way
we’d go back to how things used to be
before all this fuss).

and then I look at her
and think of us, in church, before God
then as old ladies
children grown.

and wonder:
how can love like this be wrong?

Seeing life through a lens

she saw life through a lens
photos were taken at random
making memories.

the lens had a life of its own
zooming in on awful things
and ‘click’
a photo taken
a memory made.

if she was patient
the lens would retract
giving her much needed respite
until next time.

the lens also had filters:

one made everything look perfect
her friends liked that one.
but she knew it was false, plastic
she hated it.

another made things look unreal
almost like a cartoon.
sometimes she liked this one
a break from reality
for a while.

her favourite filter though
was the one
that turned the photo to a negative.
that, at least, was truthful.

Church

In the beginning, church was community.

It was sharing
– a meal,
stories,
journeys,
lives.

But I think that sometimes we forget

Because, somewhere along the line,
church has become a building
(falling apart, and
filled with committees).

And we’ve missed the point

You see, I believe that God
will not be put in a box,
to be brought out on Sunday.
That praying before a meeting
isn’t the reason God’s there
…She just is.

And I believe that Jesus
Loves us.
– not some of us
– not part of us
But all of us.

So, I’m sick and tired of being told that I don’t belong
– of people quoting scripture at me,
hoping to convince me that I’ve
got it all wrong.

Faith is not certain
it is not safe
after all
it’s not called a leap for nothing.

On ‘doing things’ to combat depression

They say ‘Get up. Do things’.
So you do them, a puppet without strings.
They say ‘it’ll help’,
but say nothing of the guilt felt
when you don’t manage,
the damage
caused by advice – well meant,
but when you just feel spent,
when you can’t get out of bed,
when your limbs feel like lead,
there’s judgement there,
and it’s hugely unfair.
Cos when every day feels like groundhog day
you don’t get a say.

Nights are the hardest
when living is the farthest
thing from your mind.
And they say ‘relax. unwind’
– but your head is spinning,
your patience thinning.
They’re not in your head
so how dare they tell you to ‘just go back to bed’?
After reliving your worst moments
over and over, lent
to you by your overactive brain
– you still feel the pain.
And they tell you it’s not real
but not how to deal
with it, except ‘don’t think about it’.
Which would fit,
if you were in control.
but you’re not, so you play a role
– tell them you’ll try
make an attempt not to cry.

Days turn to nights, nights days
‘Get up. Do things’ they say.
But when every morning is a fight
and you battle through nights.
You’re wounded, tired
but wired
– on high alert, despite the confusion
safety is an illusion.

It takes a lot to convince you
to ‘Get up. Do things’ too.
But they say it’ll be good for you
and you’re not the expert, are you?

Awareness Days

Someone I know online has had breast cancer. She hates ‘Breast Cancer Awareness Day’. Says we’re all already aware. That wearing pink means nothing. The same with that fad of turning your Facebook picture black and white (without saying why!), for ‘cancer awareness’. She wrote a Facebook post about it that went viral. The picture she posted was a black and white selfie…of her topless, showing botched mastectomies. You could say the words she used were harsh. She said that people were already aware of cancer, and that what people need is actual help, not a bunch of black and white selfies. That the people who did it were self-serving, and wanted to feel better about themselves.

I have an odd relationship with mental health awareness days.I realise that there is a lot of work to do on stigma. However, these days don’t seem to be doing that. I once wrote:

“[mental health awareness day] seems to be an exercise in people who want to appear open and inclusive encouraging other people to have clean, sanitised convos about ‘easy to understand/relate to’ mental illnesses so everyone gets to feel smug. There, I said it.
WE DO NOT EXIST TO MAKE YOU FEEL BETTER ABOUT YOURSELF.
We are not cuddly injured puppies. We are a monstrous scary mess.”

I was feeling particularly ranty when I wrote this, but I think I have a point. These days seem to exist more for the people who support them, than the actual people with mental health problems. Additionally, where is the awareness of the ‘less palatable’ mental health issues? I can tell you that my friends with schizophrenia, personality disorders, psychotic illnesses etc do not feel included in these days.

My final gripe with awareness days – they very rarely take reality into account. ‘Just ask for help’ is all well and good, but when mental health provision in no way matches the demand (for example, after several months of waiting, feeling regularly suicidal, my friend just received an appointment through to see a psychiatrist…in August), we have to ask ourselves how responsible that message is?

It is not a case of asking for help and accessing it at a point of crisis. The reality is long, lonely waiting times. And while I acknowledge the fantastic work of organisations like Samaritans and Breathing Space, they should be an addition to NHS services, not be expected to catch all the people failed by the system – some of whom have multiple and complex mental illnesses.

What is the answer? More NHS resources, of course. Will that happen? I’m not holding my breath, but in the meantime I’m sure there’ll be an awareness day.

On terrorists

you, with the pale skin
blue eyes
blonde hair
how could you possibly be
a terrorist?

I mean, terrorists
have brown skin
brown eyes
dark hair
call their God ‘Allah’
and follow the Koran.
(no matter that the Koran teaches
peace and love
– so how can they actually be following it?)

you are British, not ‘British born’
‘British born’ means
‘born here, but still doesn’t belong’

you are not a terrorist
you are white
so you…must be a ‘lone wolf’
must have a mental illness
(no matter that
those who ARE ill
are far more likely to be a victim of a crime
than commit one.)

you are not a terrorist
though you have committed an act that has terrorised.
people will make excuses for you
thanks to your religion (or lack of it)
the colour of your skin
eyes
hair
how is this fair?
oh, that’s right
it’s not.

A letter to my younger self

Hi there.

I know things haven’t been going so well
you fell
and don’t know how to get back up.
your cup
not half empty, but half full
– of poison you want to drink
but don’t sink,
don’t fall down that rabbit hole.

I know he stole
something from you
and you don’t have a clue
how to fix it
that you don’t fit
in with your friends
and just want it to end.

Now is the time to tell
how and where you fell
this is not for you alone
a stone
lodged in your chest.

I know you’re trying your best
and you are good enough
it’s just tough.

And I understand that you’re scared
to bare
all
you’ll stumble and fall
again, ashamed
but you’re not to be blamed
(and I know you won’t believe me)
but trust me
talking is best
and you won’t have confessed
to something awful
cos it was unlawful
what was done
you were just the unlucky one
it happened to
it wasn’t about you
so whisper, talk, shout
but get it out.

The cup

scrabbling barefoot up the wall
not afraid to fall
you’re invincible, after all

you hear her call
“ya midden, get back here!”
no fear

of that
you drop
down the other side

think and think of the best place to hide
granny’s is always a safe bet
grandpa’ll not be home yet

you’ll risk the ‘granny’s pet’ refrain
which is a pain

but that’s nothing new
and there might be a few
biscuits in the tin.

you dart across the street, let yourself in
the house, a haven
granny’s used to saving
your skin
and though she mutters about sin
to strike fear
you turn a blind ear.

comforted by her presence
you say you’ll do penance
though you never will
you’ve had your fill
of confession.

still, you say you’ve learned your lesson
and she smiles
at her favourite grandchild
draws you into a hug

– then takes you by the lug
marches you across the road

this doesn’t bode
well

the cup that fell
still in pieces on the carpet

and mum’s all het
up
that cup
a gift from dad
when you still had
him

no wonder she’s mad
you go out on a limb
say sorry, start to cry

wait for her to fly
into a rage
but she’s no longer on the same page
and the shouting does not come

instead, she seems numb
‘oh, what a muddle’
she says and pulls you in for a cuddle

you don’t deserve it
but you take it.

you think of him
how you miss him

those feelings you have to hide
to keep inside.
an unwritten law
gift or flaw?

Four months

Four months. A third of a year. That’s how long I’ve just spent in hospital. When I went in in October I didn’t dream I’d still be there in February.

Hospital is a totally artificial environment. Days are structured by meal times and med times. You have to live relatively closely with 23 other patients, some of whom are very actively unwell, and some of whom (as with the general population) are just well dodgy. You learn who to be wary of, and who to trust.

Inevitably you form relationships with other patients. The important thing is to ensure that they’re healthy relationships. Which is hard when you’re all acutely unwell. Still, I made some lasting friendships, for which I’m hugely grateful.

I felt a lot safer in hospital than I do at home, but I’ve come to realise that it’s all a construct – a holding place and some breathing space until you feel well enough to take on that fight again. I’m not sure I am well enough – I’ve already had a trip to A&E since I was discharged – but I’m also not sure that more time in hospital is the answer. What is? Who knows?

It’s certainly not the Crisis Team, who after promising the ‘intensive support’, have come up short once again. Am I surprised? No. Disappointed? Yes.

Maybe the answer is to just accept that I won’t be safe for the foreseeable future, and plod on, dealing with catastrophes as and when they arise. Gosh, that’s a cheery prospect, isn’t it?! But realistic, I think.