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Posts Tagged ‘stigma’

The new Mental Health Strategy For Scotland 2012-2015 has been published, you can find the full text here.

I didn’t take part in the consultation process, I wanted to- my copy of the consultation document is still in the filing cabinet, with notes in the margins, Post-its and sections highlighted. Unfortunately at the time of the consultation my own particular set of skills were required to fight the bloody, protracted battle with NHS Fife for the correct diagnosis, care and treatment. I never got to collate my response and submit it.

It broke my heart that I once again found myself incapable of doing something I could do and do well due to mental ill health. I still feel robbed of what I had and I’m still incredibly angry with all those ‘professionals’ I had to deal with who in spite of being presented with someone who clearly knew what she was talking about, failed to believe her, failed to take appropriate action and watched her lose everything. There are many things I will never get back.

I may be here less often than I was but I’m still here and I’m still as passionate about all the things I was passionate about before mental illness took over. I care about people, society and equality and I’m prepared to fight for those who cannot fight for themselves. I’m happy to stand up and be counted, to say my piece to try and bring about change. I always have been people just stopped listening to me.

It’s very painful when you realise that no matter how well constructed your argument is however rational and informed you are and no matter how loudly you state your case- it doesn’t matter if no-one is listening. Not being heard for all that time has damaged me, there’s barely a day goes by where I don’t feel the pain of being ignored.

But enough about me, my grief and my new-found emotional fragility, I have a therapist to help with that. Let’s get down to business.

I have read the new mental health strategy; I could write many responses to it and indeed cannot rule-out many, different responses to it appearing here on the blog over the coming days. I was trying to be generous when I set-out to read it; I thought it was too ambitious to expect that dissociative disorders would be addressed at all. I was prepared to base my response around the proposals to address trauma disorders- PTSD, C-PTSD, DDNOS and DID.

I changed my mind and I have the Scottish Government to thank for this, for reminding me that stigma, even self-stigma is damaging.

Section 4 of the strategy addresses stigma-

4.  Extending the anti-stigma agenda forward to include further work on

discrimination

 

The work that has been taken forward in Scotland through see me is internationally recognised as establishing best practice and has been learnt from and adopted throughout the world

 

There is a need to build on this success by developing the work further to focus on the experience of discrimination and exclusion that many people with mental illness experience;

 

There is also the need to focus attention more directly on stigma and

discrimination in health and social care services, which is where service users often tell us they feel the most discriminated against.

 

And commitment 4 tells us what the Scottish Government intend to do-

Commitment 4: We will work with the management group for see me and the Scottish Association for Mental Health, who host see me, and other partners to develop the strategic direction for see me for the period from 2013 onwards.

 

I encourage anything that helps fight the stigma against mental illness and I’m pleased by the second point raised in the strategy that recognises that it is the mental health system that stigmatises us the most. What I’m less pleased about is the Government’s commitment to work with SAMH (Scottish Association for Mental Health) and see me- two organisations that both fail to acknowledge dissociative disorders in their publications. I’ve asked SAMH in the past why this is and they have failed to answer.

That is stigma. How am I and others like me going to be protected from stigma if the organisations who claim to help represent us and claim to help tackle stigma do not recognise we exist?

There is a section on trauma within the strategy-

Trauma

 

The relation between trauma and mental illness is complex. Across the lifespan trauma is a relatively common phenomenon and many people have experience of single life-threatening events, or longer-term traumatic circumstances, without suffering significant psychological harm. However, some do suffer harm and that harm, while rooted in the psychological trauma, may manifest in a variety of mental health problems including depression, addiction or physical symptoms.

 

While there is a growing recognition of the significance of trauma, clinicians and others may be reluctant to engage with it because of the concern of causing further harm, or of not being able to offer an appropriate response which meets the needs of the person. We need to address that deficit and improve the general service response to trauma.

 

The Rivers Centre in NHS Lothian has been commissioned to investigate the issue of staff awareness of trauma-related mental health disorders in primary care. The work will begin with engagement with a number of GP practices in NHS Lothian with different experience and circumstances. A consultation process will follow with the RoyalCollege of General Practitioners and with representatives of NHS Education for Scotland.

 

The objective of this work is to develop an approach designed to raise the awareness of primary care practitioners of post traumatic disorders, facilitate best practice management of post traumatic disorders and improve identification of available local resources and services for onward referral. This approach will be piloted in the same GP practices as are involved in the first stage study. The pilot data will be analysed, modifications to the training package will be made in consultation with the RoyalCollege and with NES, and, if appropriate, a wider rollout plan will be designed.

 

NHS NES will continue to develop and deliver a range of training courses to support staff working across the tiers of the stepped care system, including psychoeducation for complex trauma, trauma-focussed cognitive behavioural therapy and Working with Dissociation in Survivors of Trauma.

 

The Scottish Government is also supporting the UK Psychological Trauma Society to develop and support a national learning network for trauma practitioners and services working in Scotland.

 

It raises some good points. The link between trauma and mental illness is complex, clinicians are very reluctant to address trauma and an increased awareness of psychological trauma is essential for those working in mental health. I’m pleased to see that the focus on raising awareness in primary care of psychological trauma and its impact is a priority.

I’m less pleased with what the government propose to do, The Rivers Centre, commissioned to investigate the current situation deal with depression, anxiety and PTSD. Dissociation is a symptom of PTSD and indeed it even gets a mention- but only as a symptom of trauma disorders. Dissociative disorders are trauma disorders, they just happen to be at one end of the spectrum.

Similarly the UK Psychological Trauma Society deal exclusively with PTSD and address dissociation merely as a symptom.

I have no reason to be confident that any of these interventions will raise awareness of complex trauma disorders and dissociative disorders in primary care or anywhere else.

Commitment 18 therefore, whilst overall being welcome is largely meaningless to me and others like me.

Commitment 18: We will develop an approach to support the better identification and response to trauma in primary care settings and support the creation of a national learning network.

Dissociative disorders, contrary to popular belief aren’t rare, from the PODS website-

 

Dissociative Identity Disorder (DID) may affect as much as 1.5% of the population (Johnson et al, 2006). That’s just under 1 million people in the UK.  At least a further 3.5% of the population may suffer from another dissociative disorder, which equates to a further 2 million people

 

They are however rarely recognised, very rarely diagnosed and almost never treated correctly. Dissociative disorders are caused by trauma- severe, enduring trauma that begins in early childhood. Nowhere in this document is childhood trauma and its effects on adult mental health addressed. Had I developed my trauma disorder as a result of war, accident or natural disaster I may find some hope in this document. I lucked out; I peaked too soon and sustained my trauma from very early childhood.

There is one final section of the strategy where I hoped it would redeem itself and actually become relevant to me, the section entitled-

Health Improvement for People with Severe and Enduring Mental Illness

 

Dissociative identity disorder is both severe and enduring, however I know that I remain under ‘acute care’ with my LMHT (locality mental health team) as, and I quote “The severe and enduring team don’t do DID”. I didn’t even bother to read the section.

I’m not surprised but I am disappointed that once again dissociative disorders have been overlooked. By not addressing them in the strategy the Scottish Government has given carte blanche to the mental health profession to continue in their current vein of ignorance and the inequality will remain. It’s not that the information doesn’t exist or the experts don’t exist or the organisations don’t exist, it’s that to all intents and purposes we don’t exist.

I would like to see a cross-party group on complex trauma disorders and dissociative disorders established within the Parliament, I would like people and politicians to discuss dissociative disorders the same way other topics are discussed.

In the absence of NICE guidelines to offer guidance and protection for those of us with dissociative disorders, we need something statutory. We deserve to be taken care of the same way as everyone else.

So you see, I’m calm, rational, intelligent and have ideas to offer. I’m willing to speak-up, willing to fight and willing to say my piece.

But I am only one part, one member of a system of dissociated identities, according to the majority of the NHS mental health system and my Government (though I didn’t vote for this specific one) I technically don’t exist so who’s going to listen to me?

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Last night the world, or at least my tiny view of it from behind the laptop screen was talking about the 4 Goes Mad season, specifically Ruby Wax’s Mad Confessions- hosted by the self-dubbed “poster girl for mental health” (or “poster girl for mental illness” according to her twitter bio), Ruby Wax.

I didn’t watch it, the TV is still broken and it’s still too difficult for me to contemplate having someone come into the house to fix it. I ‘watched’ Ruby Wax’s Mad Confessions on twitter, the same way I have ‘watched’ TV for some time.

Obviously this show wasn’t going to represent me, I knew that. I also knew that as it championed celebrity mentalism which I have talked about before here, I probably wasn’t going to like it. I’d read a bit about the show, watched Ruby’s interview on BBC Breakfast, watched some coverage from the 4 goes mad launch night and read some comments from Ruby in an article in the Independent- I didn’t like any of them.

I have nothing personal against Ruby Wax, I don’t know her and generally I applaud anyone who tries to battle the stigma surrounding mental illness but as I’ve said before, I don’t think celebrities are the right people to do this. I could take umbrage with her investment in the medical model but I can’t really be bothered. I could point out that she’s no longer bipolar and none of you seemed to notice- but I can’t be bothered. I could point out that Ruby has never spent time in the hideous pit of shitness that is an NHS acute psychiatric ward- but I can’t be bothered. I could point out that Ruby has never had to wait months, maybe years for the correct treatment- but I can’t be bothered. I could point out that Ruby has never been unnecessarily over-medicated- but I can’t be bothered. I could point out that Ruby has never had to apply for a mortgage payment holiday (long since expired) from her bed on a psych ward- but I can’t be bothered. I could point out that despite ‘confessing’ to being mentally ill, Ruby still has a job, in fact- extra jobs- but I can’t be bothered.

So last night turned out, as expected to be a rage-fest for me, not pretty but I had every right to be angry. I was angry at the content of the show and could sit here for weeks picking through all the bits that pissed me off. I’m not going to; I can’t be bothered. Ruby Wax’s Mad Confessions left me feeling more worthless, patronised and misunderstood than I have felt for a very long time.

What last night confirmed for me is a suspicion I’ve held for a while.

As I watched the reactions to Mad Confessions roll-in and watched some fellow mentalists and all the mental health organisations swooning over the ‘honesty’ and ‘bravery’ of the host and those featured, crowing about how this time, this time someone was really challenging stigma. This was it- she was going to be the one, Ruby Wax was our saviour. I felt an increasing distance from some members of my adopted community. It’s not just my rampant hatred of celebrity mentals that created this distance, it was more.

As I trawl around the madosphere reading blogs, tweets, articles, campaigns and press releases I’m frequently smacked in the face by

RECOVERY

I don’t like the word recovery and as a concept in its broadly accepted form it is meaningless to me. I’m not going to recover, DID is for life, if you meet me in ten years time I will still have DID, sure I’m hoping that there’ll be a lot less disorder by then but I will still be several different people in one body. This makes me unacceptable to many of you. This makes me unacceptable to society and mental health organisations. I’m not alone, this is not a situation unique to those of us with DID- though that’s my drum and I will continue to bang it. There are many mental illnesses from which people will never recover to an acceptable degree; some of us will be mental forever. I’m not some petulant recovery refusnik and I’m not playing “my mental is worse than your mental” (though if you want to fight about it I’d give you a good run for your money) but I think I have found one of the reasons I may feel that difference I talked about in a previous post.

I’m not striving for recovery. On a good day I’m living, the rest of the time I exist, I just keep on keeping on. Yes I’m in therapy and yes I work hard but I work hard to achieve a level of communication and cooperation with those who share my mind, life and body, I’m not working hard to get rid of them. This is not because I have some sort on ‘investment in illness’ or a desire to stay ‘stuck in the sick role’ this is because I am accepting of my condition and what it means for me.

When I briefly and reluctantly accepted I was bipolar (I still never believed it) I was applauded, acceptance is a big deal in mental health- after all it’s the first step to recovery. Now that I have fully accepted I have DID and also fully accepted that I’m not going to recover in a way that looks like recovery to others, I’m shunned. I’m treated like I have decided that no matter what I’m going to stay determinedly mental- forever. I go against the grain, I talk freely and openly here and elsewhere about my experiences with mental illness but there is something distasteful for some of you that I talk about working with it and not working to get past it. I’m not waiting for my meds to reach the right level, I’m not practising mindfulness techniques, I’m not going back to work, I’m not finding new hobbies to ‘distract’. I just am.

I’m letting the side down by not joining the cult of recovery, I’m not shouting from the rooftops “I WILL BEAT THIS!” I’m not laying a virtual trail of M&Ms to try and coax other mentals into doing what I do, into joining me on a righteous path of recovery and return to normality. I tell it like it is, I tell my story.

I’m not writing myself off, far from it. I have the potential to be awesome and I know it- but I will be awesome and mental. But I know that for some, I have gone too mental, taken it too far.

I’m not sorry.

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Today is bipolar awareness day, happy bipolar awareness day, may your day be filled with stability or shoe-purchasing, hilarious mania. I observed the day last year, when I was still officially the least convincing bipolar people in the world. I observed it with my usual mix of sadness, outrage, activism and piss-taking in 140 characters or fewer.

There are lots of awareness days, some kinds of mental even have a week (OCD) and some a whole month in which to be aware (Depression).

There is no DID awareness day

I’m not surprised- after all how on earth could we ever decide when to hold it? As a fellow multiple pointed out this morning we probably couldn’t even decide whether to hold it in the present or the past. Then we’d have to factor in those who remain in denial that they have DID, those who are too ashamed to admit it, those who would rather buy crayons, those who would ponder if it would be the perfect day for suicide and those who never know what day it is anyway. The chances of us agreeing on which colour the DID awareness ribbon should be are slim to none. I’ve taken to wearing these on my jackets, I assume the world thinks I’m gay, I know I’m a multiple.

We could just ‘celebrate’ all the awareness days/weeks/months for all our various comorbidities, for most multiples, every day could be an awareness day. Just think of all the cards and presents!

Joking aside, this is indicative of something far deeper, something I’ve been tentative to address, mainly as I’ve been to busy licking my (metaphorical) wounds and mourning the loss of my career.

Dissociative Identity Disorder, DID is many things but primarily it is a mental illness. I can’t decide if DID doesn’t fit the traditional ‘illness model’ or if the traditional illness model doesn’t fit DID, it doesn’t matter- the results are the same.

I am quite clearly as mad as a box of frogs; in short I believe I have several other people living inside my head/body, these other people all behave, think, act, dress and talk differently. Whilst there’s never a dull moment with DID my functioning is severely impaired, my quality of life impaired, my future affected, the lives of my children are affected, my income is affected- there is nothing DID, nothing the mental illness I suffer from doesn’t touch.

I can’t tell you the last time I saw a psychiatrist, this is not due to my usual problems with memory, this is because ‘my’ psychiatrist doesn’t want to see me. Don’t get me wrong, I can think of several people I’d much rather spend those precious 8 minutes every couple of months with (in fact, anybody) but why do I not see a psychiatrist? Am I cured? Am I no longer mental?

No and clearly- no.

I don’t see a psychiatrist because my psychiatrist doesn’t know what to do with me. There is no drug treatment for DID so I can’t be drugged into a nice, easy to manage state. Seeing the psychiatrist is such a triggering event that we invariably send our sanest part to consultations, she’s lovely but formidable and never shies away from pointing out flaws in professionalism; in fact I suspect the psychiatrist may still be recovering from the last consultation.

I have no care plan; never have; I’m not even sure what one is. Is this because I have no care needs?

No.

I have no care plan because current provision cannot meet my needs; I fit the criteria for a CPA but don’t have one. For too long I have accepted the blame for this having been told by many mental health professionals I’m “different” or “complex” and my favourite “challenging”. I don’t doubt for a second I am all those things and more- they are all symptoms of my illness.

This discrimination is nothing new to me. Sometime last year, during the perpetual crisis season I was visited by the Fantastic CPN, she was so concerned about the (frankly atrocious) state of my mental health the GP was asked to visit- the GP was equally concerned and they tried to persuade me to attend a mental health assessment- I refused. Mental health assessments are not something one can refuse as the answer to refusal is that you are clearly so mental you need get one anyway.

The psychiatrist did not bother to assess me as there was “nowhere suitable to put me” this was at the time my correct diagnosis was accepted but not allowed to be spoken of as I hadn’t had the official stamp on my notes. Don’t get me wrong, I’m relieved I escaped yet more time in the horrendous pit of shitness that is the local acute ward but that day, a Friday I was considered to be a danger to myself, a danger to my children and I was left, alone, all weekend. The children were removed from my care and placed with their father; I’ve yet to get one of them back.

I struggle to label myself as a “trauma survivor” that’s kind of symptomatic of DID, particularly at this early stage in treatment. I’ve done the ‘backwards calculations’ though and as painful and difficult it is for me, I know I didn’t end up where I am today because I was a slightly miserable kid. In fact I like to think I was a veritable ray of sunshine who left a trail of happiness and rainbows in her wake.

I am a trauma survivor.

I suffer from all the same problems as other trauma survivors do- multiplied. From the little things to the big things- multiplied. I have PTSD- multiplied.

I haven’t survived the trauma of combat, just my life. There are a number of national PTSD organisations and charities in existence to help those traumatised by war and I salute their efforts. Had I survived war then I would be able to approach one of those organisations for support, guidance and maybe even some financial assistance. The first and best advice I got when I began treatment for DID was to get rid of anything in the house that was triggering, to make the home environment safe. How I wish I’d been told this before I became too ill to accept the new 5 year contract I was offered in May 2011. The back garden of the smallest house in the world terrifies me, I can’t go out there- all it needs is a 6 foot fence around the perimeter to make it ‘safe’, I can’t afford a fence, I miss the garden.

I recently replaced some cushion covers as the existing ones were triggering, I am now able to spend 6 minutes in my own living room before I scuttle back to the safety of the bedroom, 6 minutes is crap but it’s an improvement on my previous record of 4.

Then there’s  the stupid car, I had hoped “being too terrified to go over your own front door” would be enough to qualify for the higher rate of the mobility component of DLA so I could make use of the Motability scheme but alas as I have two legs this is not the case. The fact those legs often don’t move (freezing is a very common trauma response) or those legs are often very painful (somatic memory) is insignificant to the DWP. I need the stupid car to retain that tiny bit of independence I have, the stupid car, for all its failings is safe.

I am working hard in therapy and have made huge progress, I am a very active participant(s) in my own ‘recovery’ (a word I despise in this context but I can’t think of a suitable replacement) and with the right package of care I could be doing even better. I’m not a fool, I know my journey is going to be long and at times very difficult but it’s a journey I’m willing to travel. I know what my needs are, I am aware they don’t fit with the traditional needs of someone with a mental illness but they are needs that I have as a direct result of my illness/disability, I intend to apply for Direct Payments to meet my needs. I have no doubt I face an enormous challenge but I am determined. I have been NHS Fife’s ‘dirty little secret’ for too long, I’m not a bad person, I have a mental illness. I asked for a social worker to assess my needs on the 12th of June, I suspect they’re still drawing straws in the office, if it’s any consolation I have no desire to deal with any of them either- but needs must.

There are two survivor-lead organisations for those with DID, First Person Plural and PODS but they are small, under-funded and generally unnoticed. I hope one day to have the strength and stability to help move DID out of the shadows. Not because I think we’re special but because we trauma survivors deserve the same services and same recognition as everybody else with a chronic mental illness.

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Two years ago today I wrote this blog post

Ever wish you hadn’t asked?

Some time last year that post was edited and the link within changed- the link was originally to the Wikipedia entry on DID (which incidentally I think is rubbish). I know why it was changed and for the purposes of this post it doesn’t really matter. What does matter is that for two years I’ve known I had DID, the nature of DID means that I didn’t always know I had it and often didn’t think I had it- but I do and I’ve known for a very long time.

This post is dedicated to all the psychiatrists, psychologists, nurses & doctors (and there have been many) that have met me and treated me in those two years; I know many of them read the blog (though strangely they never leave comments). Even if you’ve never had the privilege of being involved in my ‘care’ if your profession brings you into contact with human beings, you may learn something too so please read on.

I can’t believe you all missed it, it was hardly subtle and I did, very kindly point it out on a number of occassions. You all need to learn about dissociation and dissociative disorders, you all need to find the courage, humility and confidence to do what’s right for those in your care. If you don’t know what you’re doing- admit it and find someone else who does. Listen to your patients, accept what is true for them, however distasteful, frightening and anxiety provoking it is for you. Put your egos to one side; ignore the flawed politics of the system you represent, stop damaging people who have been damaged enough, admit you got it wrong. If your manager/colleagues/profession are unsupportive- call them out on it, stand-up for yourselves, stand-up for your patients.

It’s too late for me, the damage caused by your mistakes is huge- but there will be others and you owe it to them, to your profession and to yourselves to ensure you don’t do to them what you did to me.

Don’t make anyone else have to fight the way I had to fight to get the correct diagnosis, care and treatment- for that fight was very damaging. Don’t assume that you know more than your patients, for all your qualifications it is the person sitting opposite you who is the expert on their own mind. Listen, believe and accept, if you can’t or won’t, have the decency to find someone who can and will. I hope every one of you has learned something from me and I hope some of you will go on to learn more in order that you can do your job and do it well.

You hold peoples lives in your hands, you have great power- but always remember what Spiderman said……. or Voltaire if that’s your bag, he said it too but Spiderman says it better.

A multiple never forgets

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