GARY

I’m not going to justify the name change. I don’t feel I have to.

What I do want to say is that my family have not accepted this since I told them almost a year ago, they laugh at me and tell me I am ‘ill’. I love all my family. Some of them, especially my three grown up daughters, love me back. I haven’t changed my FB profile to the name I identify with as I can’t stand to lose the people I love even though they can’t accept ME. I can’t cope with using two Facebook profiles as I hear voices and have many ‘parts’. I wouldn’t manage switching from one FB account to another.

This will no doubt cause confusion to those reading this who are in some of my closed Facebook groups as I will continue posting (at present) under my birth name until I decide whether to change the name on my profile to the one I identify with. A dilemma as I don’t want to alienate the people I love but who can’t or choose not to understand. Neither, though, do I feel comfortable with keeping this secret.

A shout out to the Facebook group ‘Recovery in the Bin’ for accepting my post, for supporting me, for the advice I asked for, and for calling me by the name in the title of this blog.

What I also want to say is that some people I thought were online ‘friends’, that I thought would understand when I told them about my name change, have already told me “you’re confused”, “it’s a phase”, “don’t talk about it”, “I will still call you Kat” etc etc. They have a right to their opinion.

Already, since last night, I felt the need to change my preferred Twitter profile picture to protect myself from direct messages full of hate that I received within minutes. I settled for the one shown above. A picture of me as a kid.

I have been ‘emerging56’ on Twitter for a while now. I am indeed emerging in many ways. The name I use now has been part of my emergence since birth. I have always been a people pleaser. Well now maybe I am pleasing myself. I have kept many secrets since my childhood. It hurts keeping secrets. Take it or leave it. I am ME.

Not asking for advice so be grateful for none being given.

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My Local Resolution Meeting Today……The Outcome

After an awful night last night after i received and email at 7.30 from the complaints department stating I could only discuss the inaccuracies of my response regarding my compliant and none of the things I had actually complained about in the first place!

I managed to get to the Local Resolution Meeting and decided that there was no way I wouldn’t get the agenda I had written heard. I took a bicycle lock and a placard and was prepared to chain myself to a radiator if I was not given what I have been asking for during the last 25 years.

They tried to steer the meeting to their won agenda by saying I could only discuss the inaccuracies in the final response I recited from the person who investigated by formal NHS complaint. I said that it was my meeting and that I had sent them my agenda and that was what I was going to discuss.

I asked for the meeting to be digitally recorded this was done and I will get a copy and a full transcript.

Medication: After producing and reading all the evidence I had researched for weeks e.g. NICE guidelines for ‘BPD, Will Hall stuff, Ashton Manual, UN Human rights report 2017, tweet by Wendy Burn (president of RCPsych) stating medications don’t work for BPD, can make it worse and tweet from RCPsych stating chemical imbalance is not accepted by them. I then asked as (per the response I received from the person who investigated my complaint) to be referred to a Consultant Addiction Psychiatrist. I finds this ironic as the psychiatrists I have seen are the ones who made me dependent on medications. This was agreed.

I then asked for a reduction of all of my many medications, with myself being in control of which I started to taper first and as slowly as I want and to take any withdrawal effects taken seriously and discussed regarding dosage, and to be closely monitored. I said I wanted liquid diazepam and or tapering strips if needed. This was agreed. They had no idea I knew so much.

I also stated that I would be prepared to take meds if it saved me from being sectioned but only with choice, duration and side effects and withdrawal effects clearly discussed.

I told the locum psychiatrist I’m no uncertain terms that stating I had a chemical imbalance is incorrect and that he had offered me more medications the last time I saw him (despite me telling him I wanted to eventually be meds free) and that he had not given me informed choice. The psychiatrist did not say one word during the meeting that lasted one and a half hours apart from when I asked him if was aware of the Ashton Manual to which he answered “No”!

I discussed by diagnosis and it has been changed to ‘CPTSD’ with ‘BPD’ traits……yawn. I argued the ‘BPD’ point and this is to be discussed with my clinical team with me having a chance to submit my reasons in writing.

I asked about 1-2-1 trauma therapy and was offered to see a male psychologist. Even though I have been denied this in the past because “I am too complex and self-injure”.i did say that I would prefer not to see a man and there was talk about seeing a lady psychologist from another team.

I was crying part way through and went out for a bit. Listened to James Moore’s song for a bit whilst having a cigarette lol.

Went back in and responded to the handling of the complaint itself and asked for a written apology which was agreed. Asked for a written apology from the clinical director who investigated my compliant and had replied with so many inaccuracies. This will be looked into. Asked for a written apology from my Trust for the way I have been treated because of my diagnosis of ‘BPD’ for the last 25 years. Not holding my breath in that one.

So you can see I didn’t need to chain myself to a radiator and it is a better outcome than I imagined last night. It gives me some hope that I can get out of MH services and off medication even though this may take years. Hate bigging myself up but I felt like a warrior when I left especially considering how out of control and severely distressed I had felt last night. Finally some hope!

Why it’s been pointless complaining about my ‘care’ for the last 25 years in MH services!

Sobbing and shaking and feeling hopeless.

In June I put in a formal complaint in to my Trust. Complaining about my diagnosis, the way I had been treated, lack of provision in a crisis, being medicated with no informed consent, lack of anyone in my Trust to help me safely and slowly taper from all the different drugs I take (that all interact with each other and despite my informing them of adverse side effects), and the lack of any 1-2-1 therapy to enable me to tell the story of childhood abuse. This complaint was a culmination of the 25 years I have been in MH services.

The final response that I should have revived at the end of July was never received as a few days before I was expecting it the Clinical Director who was investigating it started harassing me with answerphone message and texts asking me to consider dropping the complaint and having a case conference that I later found out had been already arranged.

I complained about his actions and another clinical director investigated my complaint. I received his final response at the end of August. His response was inaccurate and dismissive to say the very least. I contacted the Ombudsman but as my Trust had suggested a Local Resolution Meeting they would not take on my case.

This meeting is tomorrow and I have researched and printed off so much reliable information especially regarding medication, human rights, trauma informed practice etc. I had emailed an agenda of what I wanted to discuss and in what order and, after asking have got the meeting to be digitally recorded. Last week my CPN told me that her manager was coming to the meeting although she was not on the list of attendees. When I asked why she was coming I was told by my CPN “because she is interested”. I raised this with the complaints department a week ago and also asked that because the meeting was only for an hour and that I may need breaks that another Local Resolution Meeting would follow. This has been denied.

Tonight I received an email at around 7.30! Stating that the meeting is to talk about the inaccuracies in the final response I received. This response included; that there is no record of whether medication was given to me with or without informed consent(this is false!), that I had regular medication reviews (this is false!), that there is a reduction plan in place (this is false!) that my diagnosis is still ‘BPD’ (this is false! I was told it had been changed to CPTSD!) and that crisis support has been appropriate (this is false!).

The email also stated that the complaints department were only aware today that my CPNs manager was attending and this is to support my CPN.

In the meeting will be me, my advocate from POWhER ( who can’t advise only support), a Locum Psychiatrist who I have only seen once a few weeks ago (and who offered me a choice of two more medications, on top of the 5 I currently take ,with no informed consent), my CPN, her manager, and the lady from the complaints department who emailed me tonight.

I was led to believe that the meeting was to discuss the things I had raised in my original complaint. This is not the case! I was so hopeful that a plan would be agreed so that I could move forward, especially regarding tapering off my meds’ so that I am not held hostage in MH services and eventually I could get the hell out of there.

Looks like it’s their word against mine. What’s is the actual point! Bast***s!

Trauma Informed Care?

Imagine me as a toddler, a little girl, and a teenager. I won’t go into the graphic details of the truly horrific abuse I was subjected to by my Daddy. You won’t want to hear it and to be honest I can’t bare to write it.

Now imagine how I felt growing up if you can. Maybe you don’t want to think about it, maybe it far too distressing to think that a Daddy could sexually, emotionally and physically abuse his little girl. Maybe you can’t bring yourself to believe me. Maybe you can’t or won’t be able to imagine how it felt.

What would you do if you knew me as a little girl and knew that, although I seemed like any other little girl, you saw that I was deeply distressed deep inside and then I told you what was happening to me? How would you treat me?

Fast forward to the adult me aged 30 going to see my GP with low mood, anxiety, trouble sleeping. Still not daring to tell the secret I had kept all these years. The GP who said I had a chemical imbalance and that I needed antidepressants. Who didn’t ask why I was feeling the way I did.

Me aged 31 summoning up the courage and, for the first time ever, giving him a piece of paper containing a few sentences of what had happened to me. What should he have done? What he didn’t do was talk to me about the trauma. What he didn’t do was refer me to someone I could talk to. What he did do was increase my antidepressants and refer me to a ‘specialist’.

At age 33 I walk into the ‘Personality Disorder’. I see a psychiatrist who tells me I have ‘Borderline Personality Disorder’ and prescribes me antipsychotics. He doesn’t mention the trauma I had disclosed either. He says I need medication to make me feel better.

Years and years and years go by and my coping methods that keep me alive are seen as ‘symptoms’ and negative ‘traits’. Self-injury is not understood and shamed. More medications are added. I feel numb. I can’t cope with everyday ‘life’. I am told I am severely mentally ill. I receive ongoing verbally abusive treatment. I ring the Crisis Team rarely as I see it as a form of self-harm as I am seen as an attention seeker and told to have a bath or take responsibility.

Even though I dare to ask, I am denied any one to one support to tell of what happened to me. Apparently I’m too complex.

I try to take my life because the distress is too great or because I am in severe altered states. I often attend A and E where I am placed in a room with male security guards. I’m detained on a Section 136, the taser police are called and I’m handcuffed and trying to fight back. I’m detained on other Section 136s, handcuffed and try to run away. I’m rugby tackled to the floor. I’m searched and vomit on the floor. The only time I get fresh air is in a small cage but it’s not that often.

My right to freedom is taken away from me again and again for months at a time. I am locked up against my will, restrained by male staff, and injected. Sexually abused by a man in a mixed ward. Put on one to one observations with no privacy to use the toilet. No-one really talks to me. I feel as though I don’t exist. I feel that no-one cares. I feel abused and traumatised.

The present day. I am 56. Nothing has changed. I’m still on antipsychotics antidepressants and benzodiazepines. I have very recently once again been sectioned. I try to ask again and again for what I need. I put in a formal complaint to my Trust and receive a dismissive and inaccurate response. I don’t feel believed. I feel powerless and that I shouldn’t have asked for support for the trauma, to reduce my medication or change my diagnosis. I feel silenced but I fight on.

I hear rumours of something called Trauma Informed Care. I look online to see what this means. I don’t understand. It’s seems like common sense? I can’t fathom out why every single person doesn’t already know these things I am reading about. It seems this is the closest thing to care and compassion I might expect. I hear that Trauma Informed Care probably won’t be introduced by my Trust due to lack of funding. I wonder why money needs to be spent and why people don’t already know how to treat people like me.

What would you do if you knew me as a the woman I am today and knew that, although I seemed like any other little woman, you saw that I was deeply distressed deep inside and then I told you what had happening to me? How would you treat me?

Nothing has changed!

Trigger Warning Poem based on Jesus to a Child (George Michael) showing how confusing incest is to me

No Kindness

In your eyes, I guess

You never heard me cry

Yet you smiled at me

Like a Mummy to her child

I wasn’t blessed

I know

Heaven sent

But childhood stole

Yet you smiled at me

Like a Daddy to his child

And what have I learned

From all this pain

I know I’ll never feel the same

About anyone

Or anything again

But now I know

When I’ve had no love

But I know that it exists

That the Daddy that I miss

Got in my bed on those cold, cold nights

When I’ve not been loved

But I know it holds such bliss

That the Mummy that I kissed

Didn’t comfort me when there was no hope in sight

Sadness

In my eyes

No one guessed

Or no one tried

Yet you smiled at me

Like a Mummy to her child

Loveless and cold

With your last breath

You cursed my soul

Yet you smiled at me

Like a Daddy to his child

And what have I learned

From all these tears

I’ve waited for love all these years

But when I was a child

Daddy took it all away

But I still say

When I’ve had no love

But I know that it exists

That the Mummy that I miss

Never came to me on those cold, cold nights

When I’ve not been loved

But I know it holds such bliss

That the Daddy that I kissed

Didn’t comfort me when there was no hope in sight

So the words you could not say

I’ll say them for you

And the love you should have shown

I can’t make it come true

For every single memory

Has become a part of me

You will always be

My love

But, I’ve not been loved

So I don’t know what love is

And the lover that I kissed

Was the Daddy by my side

Oh, the Daddy I still miss

Is confusing to this child

‘A Heartbeat of Hope’

Not long out of hospital again, where I received little care.
Feeling powerless and hopeless and so full of despair.
My ‘life’ has been traumatic, distressing, I long to be free.
Yet, I don’t deserve kindness from others, let alone me!

I noticed an event called Compassionate Mental Health.
With support from others, I booked it and found strength.
The thought overwhelmed me, I have no words to explain.
But I knew I needed to begin to free myself from my pain.

But how could I get there? the journey would take forever.
A lovely lady went out of her way, and we travelled together.
What an act of overwhelming kindness to start the first day.
Car sweets, chatting, laughing and bonding the whole way.

The tent, the beautiful people, the real life human company.
The joy in morning when someone made me a cup of tea.
How different it felt when there was just no preconception.
Sitting round a log burning stove we made a real connection.

No ‘them and us’, no mention of illness, disorders or labels.
Instead, equals, human beings, were some of the phrases.
At this gathering I felt the true warmth of so many caring folk.
This feeling enveloped me like a kind of empowering cloak.

No~one afraid to show their emotions, I felt incredibly safe.
Mirrored in the faces of others, my worth I began to embrace.
Telling part of my story in a circle, was ‘held’, heard and loved.
I cried, wasn’t judged and even allowed myself to be hugged.

The power of the deep emotional human contact was so real.
Within me the scared little girl knows now she deserves to heal.
I realised I matter, the people in the forest helped me to see.
I’ve begun writing a list of small steps to care and be kind to me.

I sit alone again but with the memories of the camp in the wood.
The feeling is still there, that feeling of being totally understood.
Three days of unconditional humanity, something in me awoke.
I know what it is, I’ve had time to reflect it’s a ‘heartbeat of hope’!

 

 

 

 

 

 

 

 

 

 

 

 

I booked a place at a gathering for compassionate folk
Awoke

A forest in Wales became my home for three days

Why I’m Not Online Right Now

Frightened that Mental Health Services are doing me more harm than good but that I am trapped in a system where I am treated so stereotypically and am just a ‘borderline’, that crisis services can not keep me safe and where no-one actually cares. Frightened that I will end up on yet another section and hospitalised. Frightened because I am stuck in the system because I have no help to stop my medications and because, despite complaints that the system is not helping me, the responses are always dismissive and inaccurate. Frightened by the similar stories I hear from others with lived experience. Frightened that things will never change.

Frightened by the articles I read about the harm the antipsychotics, antidepressants (I have been taking for the last 25 years) and the Diazepam, Temazepam, and Zopiclone (I have been also been taking for the last 6 years) are doing to my brain, my central nervous system. Frightened by the adverse side effects that make me feel more suicidal. Frightened because my voices have become more persistent and louder. Frightened because I feel so sedated and unmotivated. Frightened because I often feel unable to do the most basic daily tasks. Frightened because my emotions are numbed and I can’t begin to cope with dealing with them. Frightened because I feel so lonely,

Frightened that I have no support to slowly taper and withdraw from this cocktail of drugs despite asking for help to do this for the last decade from my CMHT. Frightened when reading articles about how dangerous it can be to stop taking these drugs and the withdrawal effects that may accompany this process. Frightened that if do begin to taper by myself that my emotions will be unleashed and that I won’t be able to cope with the reality of the trauma that happened to me.

Frightened by the negative label of ‘Borderline Personality Disorder’ that was slapped on to me in 1993. Frightened that, despite knowing logically that I do not have a severe mental illness and that it’s not what’s wrong with me but what happened to me, that I am indeed broken, that I will never recover, that I am manipulative, and attention seeking and a patient that professionals despise the most. Frightened when I read articles about BPD and when told by professionals I see in person and online that I have a disease and a chemical imbalance that I will never recover from. Frightened that maybe it’s me that’s got it wrong and that I deserve to be treated as a diagnosis and not a human being.

Frightened that the story of my abuse will never be told as although being in secondary mental health services for 25 years not once have I had the opportunity to talk about this in a one to one safe, slow and therapeutic environment because apparently I am ‘too complex. Frightened that the emotions that are buried will continue to affect my agonising distress and I will never escape. Frightened that if I can actually get the support, that after waiting all this time I won’t be able to speak the words. Frightened that the abuse I suffered will not be believed.

Frightened by the voices of the ‘littles’ I hear that are crying and terrified. Frightened by the voices of the ‘nasties’ who take over any control I have of my own thoughts. and actions. Frightened of a fairly new voice that repeats the stereotypical things written about BPD. Frightened that the voice of my Great Aunt won’t be able to step in to help me. Frightened that I am losing control of my mind. Frightened because those I have known and those I have loved, including my brother, have taken their lives to escape their pain. Frightened that I feel jealous that they no longer suffer.

Frightened that the effort of fighting for what I think I need still goes unheard. Frightened that I don’t have the energy to keep on fighting and that maybe I am simply being too needy. Frightened that I’m being weak, that my inability to get over the trauma that happened to me is because I am not trying hard enough. Frightened that I don’t care about myself enough to try at all.

Frightened that when you read this you will think I have written it to get sympathy. Frightened that I only have so much actual proof that what I have written is true. Frightened that you won’t believe me. Frightened that I may be attacked on Twitter for fighting to drop the disorder.

Frightened to go online as I find myself trying to make sense of all I have written. Frightened this may make things worse.

Frightened but I will keep on keeping on.

 

What do I do?

So, I reject a diagnosis of any kind. I reject my diagnosis of ‘Borderline Personality Disorder’ as this is one psychiatrists opinion of my ‘life experiences’ slapped on me at a 20 minute appointment back in 1993. This label has never been removed. I am an individual and my traumatic experiences are mine and only mine. I feel judged, invalidated, stereotyped and stigmatised.

What do I do?

In mental health services for the last 25 years I am treated as a person with ‘BPD’. There is little care and compassion for me, a person who has managed to survive the most unimaginable horrors a child and adult could go through. There is no talk or support for the abuse I have suffered. Nor is the fact that I have been further traumatised by the mental health system acknowledged.

NICE guidelines say that long term medication is not advisable for ‘BPD’ yet I have been on meds constantly for the last 25 years. I’ve been trying for over a decade to get support, advice and monitoring to slowly taper of the cocktail of meds I take.

I have written a formal complaint under the NHS complaints procedure regarding my diagnosis, medication and lack of any trauma support. I received a dismissive and inaccurate response which stated that there is no specific trauma service as standard and to apply to the CCG for funding to obtain it.

I am going to attend a local resolution meeting with my CPN and a locum psychiatrist. I don’t hold out any hope that anything will change. I only saw this psychiatrist a few weeks ago and he said I had a chemical imbalance and advised even more medication.

I have applied to my Trusts Information Governance Team to have my diagnosis removed permanently from my records. For this to happen the psychiatrist who diagnosed me in 1993 (who still works at my CMHT) has to agree that this diagnosis was inaccurate all those years ago. Of course it was. I have never had ‘BPD’!

My CPN and I have done my Care Plan recently by a formulation approach which means she has listened and really heard my life experiences. There is no mention of a ‘disorder’ and this makes me feel better. However, we are both frustrated that this formulation has not changed in any way, how I am treated by the other professionals I see.

I shouldn’t need a diagnosis to access services or benefits but it seems that I do.

In the media and on internet sites ‘BPD’ is talked about as if it actually exists. Professionals argue about it on Twitter, and ‘BPD’ research and articles are written by ‘experts’. Anti-stigma campaigns and information about this diagnosis write about people like me who are labelled with this diagnosis as if it is true.

I know logically that I do not have ‘BPD’ but at the same time I am bombarded with all this information that ‘BPD’ is a real ‘thing’ and that I am ‘ill’. In moments of totally overwhelming distress I start to think that my personality is actually disordered. That I will never be able to overcome my distress. That I won’t be able to carry on with the pain. That things will never change. That I deserve the negative and discriminatory treatment I receive. I feel hopeless.

What do I do?

A Poem for Matt who took his life on Thursday.

FOR MATT

You lived on the other side of the world and we never actually met
But your compassionate, caring nature I will never ever forget

We discussed dropping the disorder and messaged so many times
About ‘diagnosis’, ‘disorders’ and other truly hideous crimes

We became connected friends and you showed me that you cared
A feeling of solidarity where trauma and distress were shared

You helped me through my dark times and helped me understand
How I wish I could have met you I’d want to shake your hand

You inspired many people with your articulate and intelligent words
I’m so very glad you wrote them down and had your story heard

Know that your fight to drop the ‘disorder’ will be echoed in my cries
Collecting in our numbers are those that march on as true allies

I’m glad you are at peace now and that your distress has gone away
I don’t judge you, but you will be missed is what I want to say