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Archive for the ‘Multiple Personality Disorder’ Category

Scottish Government, See Me After

Posted in activist, Dissociation, Dissociative Identity Disorder, equality, Multiple Personality Disorder, NHS, Nicola Sturgeon, politics, Stigma, tagged , , , , , on August 13, 2012 | 4 Comments »

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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Movie Metaphors

Posted in DID, Dissociative Identity Disorder, Head noise, Humour, metaphors, MPD, Multiple Personality Disorder, tagged , , , , on August 9, 2012 | 2 Comments »

1. Alvin And the Chipmunks

  • When he first discovers them; Dave doesn’t want the chipmunks
  • The chipmunks trash Dave’s house
  • Thanks to Alvin, Simon and Theodore- Dave’s career is ruined
  • The chipmunks ruin Dave’s social life
  • The chipmunks often sing during the night
  • Dave can’t control the chipmunks
  • One of the chipmunks needs glasses
  • Alvin, Simon and Theodore are all different- but they’re all chipmunks
  • Dave realises he loves the chipmunks and can’t live without them

2.

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Weird Science

Posted in crying, DID, Dissociative Identity Disorder, insight, Internal Communication, MPD, Multiple Personality Disorder, Triggers, tagged , , , , , on August 8, 2012 | 25 Comments »

I can’t see properly- sometimes. I used to wear glasses to correct astigmatism; sometime in 2010 I stopped wearing glasses and also became the “first person the optician had ever met in his career who has spontaneously cured their own astigmatism.” I spend an inordinate amount of time squinting, reading through one eye or just not being able to see very far or very well.

I’m allergic to lilies- sometimes. I often ‘forget’ and buy them anyway, I then find myself wondering why my face is swollen and I’m wheezing a couple of days after bringing them into the house. I’m also allergic to kiwi-fruit, bananas, latex, rats, lanolin and pineapple- sometimes. I err on the side of caution and assume that I have the potential to be allergic to anything so always keep a supply of anti-histamines in the house. Using products from Lush in the bath is like playing anaphylaxis roulette.

I have terrible eczema- sometimes. My eczema has defied explanation at various stages over the years, it appeared to be linked to hormones for a while- but then it wasn’t. It appeared to be due to allergies for a while but then it wasn’t. Some of the vast array of treatments I have been prescribed worked- sometimes.

I found out in August 2011 that I have curly hair- very curly hair- sometimes. I mentioned this to someone involved in my ‘care’ at the time; she asked if I simply hadn’t noticed I had curly hair- for 36 years- as I straightened it. I’m not sure when GHD’s were invented and I know my recall of anytime previous to right now, right this minute can sometimes be sketchy but I’m pretty sure the explanation is not that straightforward.

I can explain all of these physiological anomalies in a very straightforward way- I have enough system knowledge to tell you which parts have bad eyesight, which parts are allergic to lilies, which parts have eczema, which parts have curly hair- but I’m not going to.

What I can’t explain is why and that frustrates me. I am a logical person, I like cold, hard, quantifiable facts- this makes me curious, analytical and sceptical. The physiological anomalies of dissociative identity disorder really challenge me. I’ve looked for information, I’ve found a lot of fellow DIDers sharing similar experiences but I’ve found very little science to back it all up. I like science.

I’m tormented by my natural, logical nature as I know on one hand I can explain the weird things in terms of ‘who has what’ but I also know, that even though it doesn’t feel like it and even though I would argue it wasn’t the case 90% of the time- there is only one of me and I only have one body.

The weird things are also difficult to talk about and I’m very reluctant to offer anything regarded as ‘fanciful’ that will add fuel to the ‘does DID exist’ fire. I would never have believed any of these things either- until they happened to me. Those of you who have been reading for a number of years and indeed those of you who read who have known me in real life will know I have no reason to lie.

I am forced to simply accept the physical changes between identity states in dissociative identity disorder just ‘are’. I have trawled the internet for information and found very little, partly as I’m constrained by Google scholar and have no journal subscriptions so am reduced to reading abstracts which perhaps pick up on one key word in my search. I have other theories as to why there’s very little research into this fascinating aspect of DID. I can’t imagine that many of us would make very willing test subjects, we’re all different but our general aversions to being asked questions and the medical profession probably makes us poor participants in research. There are no drugs to treat DID, in the absence of big-pharma being interested there are very few revenue streams for funding research. What research there is tends to be on the physiological changes associated with trauma or differences in memory between identity states. I read a lot, I’m an information junkie, for the longest time this was done in a tireless pursuit to somehow ‘prove’ to myself I didn’t have DID- I never found what I was looking for.

Writing this is difficult, not least as I can’t see very well. The obvious answer is to go to the optician and have my eyes tested but for the time being that is impossible. Eye-tests involve close proximity to another person, being in darkness, extended periods of eye-contact and being touched- it’s far too triggering. Besides how would I ever find an optician willing to accept that I might need glasses- sometimes and that indeed I might need three different prescriptions- sometimes.

I’m fascinated by myself and by DID, in many ways I’ve fulfilled one of my dreams by finding something that can hold my interest and satisfy my pursuit of knowledge. Right now I’d settle for knowing why DID is so physically exhausting as it’s only just past 8am and I’m so tired I could cry.

I do cry- sometimes.

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Friends: The One Where Nothing Happened

Posted in blogging, children, communication, DID, Dissociation, Dissociative Identity Disorder, friends, Internal Communication, mother, MPD, Multiple Personality Disorder, parenting, single-parent, Skills, stress, therapist, therapy, Told you it wasn't like Stephen Fucking Fry, Uncategorized, tagged , , , , , , on July 29, 2012 | 16 Comments »

Nothing happened yesterday so I’m still fine.

I’m still coping, it still looks good.

It’s as though, when the 7 year-old returned home, I faced a choice-

Parent

Or

Have DID

Obviously this wasn’t a choice I could make and as with all things for those of us with DID, the choice gets made for us. I can see what’s gone ‘wrong’ for want of a better word, what happened wasn’t a wilful mistake, it was a reaction. The way things are now is working; yesterday even included some fun activities, such as-

  • Very brief visit to a fruit farm
  • Watching Mama put petrol in the car
  • Playing Lego Star-Wars on the Wii
  • Grief counselling (he didn’t save his game)
  • Sibling rivalry- complete with screaming
  • Watching videos of Brown Recluse spiders on YouTube
  • Freaking out about sweetcorn

I can deal with all of this- and more, I can remain calm and appear normal the entire time, nothing gets the job done quite like dissociation. It works well for the children but It’s not sustainable.

I’m exhausted and that constant, low-grade pain that appears to have been gifted as some sort of bonus with DID that I’d usually be able to ignore completely has shifted up a notch. I’m horrified at how rapidly shitty “coping mechanisms” (why we call them that when they are invariably methods employed when we’re not coping is a mystery to me) used in the past have tried to creep back in and saddened by how difficult I’ve found this weekend so far.

I’ve been buoyed by the messages friends have continued to send, here and elsewhere, our resident comment moderator has been allowed to sneak out in the wee small hours to reply- that connection is vital and I’m grateful to those of you who recognised that even when we’re not allowed to talk, we’re allowed to read. You’re all very special and very missed, the internal pining-o-meter is off the scale

The silence is making me desperately unhappy and the external silence is no longer reflective of the state of things internally. I’ve never been so glad that you can’t tell by looking and again, I’m grateful for dissociation as this has allowed me to parent seemingly unhindered by the inner turmoil. I have a million thoughts but very few words, I miss my words.

If nothing else, this weekend has dragged me out of the creeping denial that was setting in again and that’s positive though painful.

I won’t deny that things are incredibly difficult at the moment but as ever my natural curiosity and love of learning has provided a distraction. I don’t always like what I’m learning but I do manage to pique my own interest often enough to make it all a bit less shitty for a little while. My low emotional tolerance and high distractibility have been assets this weekend.

I have an appointment with the <?> therapist tomorrow and I’m awfully glad I do. I’m confident that between us we can come up with some things that will help make the current situation not better, not even ok but just less de-stabilising. At the moment I’ll settle for regaining the courage and confidence in my skills to face coming home again after the session.

I have some new practical issues to face tomorrow. In order to get to therapy on time I have to leave the house at 7.30am, half an hour before the 7 year-olds holiday club thing opens. I’ve asked the 15 year-old to get up some 7 hours before her preferred rising time and mind her brother whilst I’m out. She’s agreed to do this but has yet to be persuaded to go to the extra effort of washing dressing and delivering the 7 year-old to his holiday club thing. So I am a little concerned that the current need to crash out on the bed for anything up to three hours in a switchy, drowsy, head-noisy haze after a therapy session will have to be ignored in favour of a return to coping.

So as ever, I don’t have my troubles to seek and the pace of life just feels relentless at the moment, there’s never a dull moment with DID.

I’d love some dull moments.

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According To Our Latest Findings- You’re Super

Posted in Anxiety, CBT, DID, Dissociation, Dissociative Identity Disorder, emotions, Fantastic CPN, hypervigilance, insight, Internal Communication, MPD, Multiple Personality Disorder, Spiderman, The Fear, The Smallest House in The World, Triggers, Twitter, Uncategorized, tagged , , , , , , on July 26, 2012 | 20 Comments »

I don’t think  I’ve ever detailed my virulent hatred of CBT (cognitive behavioural therapy) on the blog, I talk about it a lot on twitter and as some of my poor victims will know, I used to practise it there.

In times of distress I was always available to offer therapy, mainly along the lines of-

WHY ARE YOU DEPRESSED? OTHER PEOPLE ARE FAR WORSE OFF; SOME HAVE DEAD PETS. JUST STOP IT!

And

YOU ARE EMPLOYING MAGICAL THINKING. JUST STOP IT!

And

YOU’RE NOT BEING PARANOID. PEOPLE DO HATE YOU- BECAUSE YOU’RE RUBBISH. JUST STOP IT!

I’m in semi-retirement from my CBT practise these days, though rest-assured, should I spot you indulging in a little black and white thinking, mind-reading or catasrophising then I will point it out and insist you desist.

It may surprise you to know that I’m not a trained CBT practitioner, but I am a quick learner and managed to pick-up quite a lot during my own very brief dalliance with the technique. I had three sessions of CBT before I was declared too mental; I don’t remember much, in fact all I remember is

“WHY WOULD YOU MAKE YOURSELF VOMIT? THAT’S JUST STUPID”

Which as you can imagine was enormously helpful for someone who at the time was attempting to ‘regulate their emotions’ by throwing-up every morsel of food she ate. I waited 9 months for some harridan in a maxi-dress (she may have been a psychologist) to berate me for being mental. I’ve never been so glad to be declared ‘un-helpable’ in my life, being discharged was a gift.

CBT was never going to help me; I’m quite capable of berating myself, I don’t deny I sometimes indulge in all the common cognitive distortions but I’m a multiple so I also know when I’m doing it, why and what to do about it. I can administer CBT to myself. It doesn’t make me any better or help at all in any way but I know I should keep doing it or everything will go completely wrong and end in disaster. Furthermore it will all be my fault; I know others will blame me for everything as they all think I’m rubbish anyway.

There is one psychotherapeutic technique with a cognitive basis I don’t despise completely- reframing. I love a good reframe. I often reframe my days in order to make myself feel better; I’m quite the Polyanna and on balance, probably wear my rose-tinted spectacles as often as I wear my shit-tinted ones. At this stage I probably would lose the will to live by 10am most days if I didn’t paint everything with rainbows-

Forget an entire day- it must’ve been rubbish anyway.

Got lost in Tesco- accidentally found the stationery aisle.

Haven’t been out of the house all week- didn’t run away to Paris/Newcastle.

Drank too much wine- didn’t mix with benzos.

It’s a useful technique but there is a danger that a reframe can become a wanky platitude. The two run very closely together, I’ve sketched a graph to illustrate.

I can also spot a reframe a mile away so often feel patronised and invalidated, sometimes this is justified. Back in the day of the frequent dissociative trips that ended in police involvement, MHAs, helicopters, trips to A&E and the bin etc the Fantastic CPN would always comment “but you came back and you’re ok”. I’m not sure what my response at the time was, these ‘trips’ left me confused, terrified and ashamed but the fact I was still alive was supposed to be enough to comfort me when it was quite clear I had completely lost control of my mind and my life. So reframing, whilst useful can also be a tricky balancing act.

The 7 year-old has returned home, earlier than I planned. I’m not entirely sure how this came about but I’m sure there’s a paper-trail somewhere. Today I finally have a man coming to fix the TV- you can’t have a 7 year-old child in the house with no working TV, well you can if you

a)     dislike children

and

b)     are happy to provide round-the-clock entertainment

I’ve mentioned before that this kind of situation, where I have to allow a stranger to enter the smallest house in the world is very challenging for me. I don’t imagine for a second that the TV man presents any real threat (other than to the bank balance) but I am crippled by hypervigilance.

I have extremely keen senses- all of them, they are my useless superpowers. I’m always on the lookout for signs of danger, be they real or imagined. I am permanently primed, ready to freeze, flee or have a complete meltdown at the first sign of peril. It’s not a good way to be, physically or emotionally- hypervigilance makes me mental, bonfire night in this house is probably similar in many ways to bonfire night in Battersea Dogs Home. I can’t just stop being hypervigilant and so, at times I hate myself for it.

I clearly needed some sort of reframe, so you can imagine my unbridled delight when I found this article that confirms that I am not only super-human but Spiderman. I have nothing to fear from the TV man, unless of course his name is Norman Osborn…….

click image to read article

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Oh I’m Sorry, Did We Take That Too Far?

Posted in activist, bipolar, blogging, Celebrity Mentalism, communication, DID, Dissociative Identity Disorder, hospital, illness, insight, Internal Communication, mental illness, Multiple Personality Disorder, NHS, politics, therapy, Told you it wasn't like Stephen Fucking Fry, Uncategorized, tagged , , , , , , , , , on July 24, 2012 | 44 Comments »

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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Personalisation(s) Of Services

Posted in communication, diagnosis, DID, Dissociation, Dissociative Identity Disorder, Fife, friends, insight, Internal Communication, laptop, mental illness, money, MPD, Multiple Personality Disorder, NHS, Nicola Sturgeon, parenting, Paris, single-parent, social worker, support, The Smallest House in The World, Told you it wasn't like Stephen Fucking Fry, Triggers, Twitter, tagged , , , , , , , , on July 22, 2012 | 7 Comments »

To quote from the Mind page on personalisation and to save me launching into a lengthy explanation of what it’s all about- The Government wants more people who use support services to have ‘choice and control’ in their lives. That is why they have introduced direct payments. I’ll leave the debate about Government, what it actually wants, what this means for mentalists in general to others.

I mentioned in a previous post that I had applied for an assessment of my needs from the local authority in order that I could apply for direct payments. This assessment is on Wednesday the 25th of July. This is not about me having more ‘choice and control’ this is about me actually getting some sort of service. Currently I’m deemed ‘too complex’ for exisiting services, indeed the reason it’s taken so long for a social worker to arrange to do the assessment is because I am ‘so complex’. Whilst I’m relieved that this isn’t because the social worker was too scared to come back after being met with the simmering ball of frustration and hatred I was last time which, in my defence I only was because NHS Fife were still refusing to recognise, diagnose and treat my illness and the last thing I wanted or needed was someone to help with the shopping, I need to say something about my perceived ‘complexity’.

DID is complex, I am not complex, I’m actually very straightforward, all you have to do is listen to me. If you look at me as a disorder then I’ve no doubt what you see can be quite challenging but what anyone tends to be met with is an individual, sure sometimes things go awry and you can be met with several individuals but all you have to do is listen to what they say. My ‘complexity’ is used as a stick to beat me and a reason to treat me differently, it creates barriers. Instead of all those referral letters that begin “Zoë is a very complex….” How about “Zoë is a lovely…..” or “Zoë is a very funny….” or “Congratulations, now you too can experience, first-hand the sheer awesomeness that is Zoë….” Unless perhaps it’s a referral to social services in which case and in the interests of honesty and transparency the letter should probably begin “I’m sorry, Zoë will probably despise you by virtue of your chosen profession, it’s nothing personal as I’m sure you’re lovely but she’s had some very bad experiences with your kind….”

So I’ve been thinking a lot about what my needs are, what kind of things would be helpful, would make life easier. It’s very tricky as I struggle to ask for or accept help, I feel undeserving of help and a lot of the time would deny I needed any. Coping is what we do best, those who have DID or know about DID will know that the perceived level of coping is actually inversely proportional to the mental health of the individual and I know, personally that ‘coping’ is one of my biggest danger-signs and is usually a precursor to crisis. I’m keen to avoid coping so I know I need some things in place to help make things easier, especially as I am soon to return to caring for two children full-time again.

I’ve considered the obvious things, practical support- help with housework and shopping- and ruled them out. Having to deal with people is problematic; bringing a person into my life introduces a whole new set of challenges. In a moment of insight the other night, whilst sitting in my local Chinese takeaway I figured out one of the main reasons people are so triggering, I briefly felt like a genius until I realised that reason was ‘because they move’ I then felt like a persuasive case for euthanasia. At the moment I simply couldn’t stand having someone come into the house to ‘help’ with anything, I’d be constantly on my guard to protect myself and besides they’d have had a quick run-down on DID, and they’d be waiting for me to “do a Sybil”. I’ve never read or watched Sybil so my frame of reference is lacking in detail but I know enough about it to know that for the most part, it’s a very poor portrayal of DID.

I’ve tried to look at my average day to get an idea about what my needs are, I don’t have average days. The only constant running through my days is that they will be fragmented, random and involve some chaos. Today for example involved an early-morning excursion to Tesco for milk. The trip to Tesco was derailed slightly as the store I usually go to and have well-mapped had had a slight re-modelling. I only know this as there is a ‘distress tweet’ from around 6.30am saying this, I’m very sensitive to changes in my surroundings so it may be that Tesco is much the same as it was last time, they may just have adjusted an onion or something. So I came home from Tesco with all the essentials- milk, bread, cat food and three boxes of Fuzzy-Felts (dinosaurs, under the sea and pirates for anyone interested). So I suppose I could argue that having someone to do the shopping would be helpful- but then how would I get Fuzzy-Felts?

You see my needs are unique and whilst I’m sure one box would have sufficed I can argue that Fuzzy-Felts, particularly the dinosaur ones are an essential part of my care. Similarly I could argue that I should be given black Converse free on prescription. Confusion is a major feature of DID, black Converse are the ultimate, dynamic, age-appropriate footwear- they are shoes for everyone. In situations where it’s likely switching can be rapid and chaotic, making sure everyone is wearing shoes that make them feel safe is essential. I could also make a good case for being given stationery on prescription. Post-its are an essential part of my selves-management; notes to selves are a mainstay of internal communication. The “whiteboard of madness” which hangs on the bedroom wall is crucial in ensuring that the days hang together in some way, important things don’t get forgotten and needs, wants, fears and desires can be communicated. So I could add whiteboard markers to that prescription. Some internal communication is done through drawing so colouring pencils, felt-tips, crayons and paper are also much-needed items. Now that I’m no longer unnecessarily drugged into a nice easy to-manage zombie-like state and have freed up 70% of NHS Fife’s budget by becoming a free-range mentalist, I’m considering approaching the GP with my prescription requests. After all 99% of the time I would claim not to exist in a physical sense, have no body and therefore never experience physical illness so I’m hardly a huge burden as patients go. This may or may not be related to the fact that the GP is still on the long list of “THINGS THAT ARE WAY TOO TRIGGERING”.

I’ve thought about my ‘social needs’ I do have them but again I’m constrained by my current, somewhat fragile state. I adore people but I fear them too and so, my social needs are best met in a virtual way and this suits me. In fact I suspect I spend more time with friends than most as I can do it in a way that’s comfortable, controlled and safe for me. So I could ask for help to pay for my broadband service? I can justify this request if necessary but I can’t see the local authority understanding. Similarly I could make a good case for having my mobile phone contract costs met by the local authority. The phone is essential in helping me keep track, avoiding confusion. Whether this be a photograph of a person/situation/place that later helps remind me where I’ve been, what’s happened and who with or a tweet that discloses my mood or location or a text to a friend to let them know I’ve been attacked by the ‘silencing mentals’ and not to worry as I’ll eventually be back,  the phone helps me communicate and more importantly, communicate in a way that leaves a written record so that it can be accessed again later. Since the Paris trip I’ve also undergone a comprehensive self-led training course in Google maps and navigation so having the phone with me is an extra guard against getting lost.

I’ve considered my recreational needs; I do have some as I have multiple hobbies. I enjoy the very occasional film though am still limited to watching films I’ve seen before and therefore have a fair idea of the potential triggers and can guard against them, those of you who know me elsewhere may remember the harrowing emotional rollercoaster that was my first and last viewing of Disney’s Up, I remain in two minds about balloons to this day they bring me right back to that film. I have a small team of film reviewers on twitter who have a good understanding of my needs but sadly, we’re still at the stage where the conclusion is usually “it was good but not for you yet” so I can’t go to the cinema and I don’t really need DVDs (DID and films/TV is another one of those book topics I mentioned in a previous post). I adore music, my tastes are ‘eclectic’ music is essential and again, DID and music is a potential book topic. I could argue that there is a need for my music supply costs to be met by the local authority but as I ‘purchase’ all my music from isoHunt I suspect I’d be fighting a losing battle.

So I’m a little stuck, I know I need something but I don’t know what that something is. On paper I’m an ideal candidate for self-directed care, I’m intelligent (another attribute used as a stick to beat me, MH services prefer their mentals to be stupid) I’m articulate, have a good understanding of my condition and am keen to make progress but in practise trying to define the support I need is just another cause of confusion for me and another thing that makes me feel different.

The other problem I have is that I am more than capable of doing everything myself. I have no doubt that eventually after a few weeks, maybe months this would cause complete de-stabilisation and a spiral into crisis but I can do it, I can do it all. I’m trying to convince myselves that just because we can do it, doesn’t mean we should or that we have to. It’s not easy. Self-sufficiency can be a very good thing but can also be incredibly self-defeating when it becomes more about control, lack of trust, fear and keeping everyone away than confidence, empowerment and choices.

So I’m still none the wiser as to what I should be asking this social worker for, I intend to give the matter my full attention over the next few day, in between playing with my new Fuzzy-Felts.

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Multiple Mama’s

Posted in children, co-sleeping, communication, DID, Dissociation, Dissociative Identity Disorder, emotions, hugs, insight, Internal Communication, mother, MPD, Multiple Personality Disorder, NHS, parenting, single-parent, Skills, stress, tea, therapy, Told you it wasn't like Stephen Fucking Fry, Triggers, tagged , , , , , , on July 20, 2012 | 16 Comments »

Today I have been a Mama for 18 years. That’s technically not true; I only became “Mama” around 6 and a half years ago when my youngest son decided that’s what he was going to call me, the older children followed his lead. Previous to that, I’m not sure what my title was but my job was the same.

I have three children- an 18 year old son, 15 year old daughter and a 7 year old son. The children are generally happy save for their own individual neuroses; they are intelligent and good-humoured, curious, energetic, polite, creative, sociable in their own unique way and very loving.

My parenting style is eclectic though at times, probably best described as “haphazard” I kind of make it up as I go along. Cereal (branded or generic) is a legitimate dinner at least once a week, baby wipes are an excellent substitute for a bath every other night, ketchup is a vegetable. 3 hours a day on the internet is “learning”, swearing is ok if it is grammatically correct and used appropriately. Discussion at the dinner table is actively encouraged even if it is about world hunger or decomposition- which as anyone with a 7 year-old son will know; it often is. Bedtimes can be fluid if I’m not craving peace; curfews are negotiable if the text messaged request is funny enough. Later-on drugs can be experimented with as long as they’re not chemical or addictive, getting drunk is ok as long as you stay safe and don’t get “fall down, piss yourself drunk”. A screwdriver is a legitimate toy, breaking things is “science”, woodlice are pets. Food colouring is for icing, mashed potatoes and baths. Beds are for sharing, books are important but can be annotated if desired, magnifying glasses are essential as are torches. School is crucial and should be approached with enthusiasm and the courage to question, further or higher education is optional. Individuality is cherished, love is unconditional.

In return for my eclectic parenting style I have 3 rather wonderful children, all popular with peers, all healthy, all able to come to me when necessary as far as I know- as far as any mother can know I suspect, after all you don’t know what they don’t tell you. I know I’m not an ogre- the 18 year old is able to discuss his sexuality with me, the 15 year old trusts me with her secrets and friends, the 7 year old still thinks I am a walking encyclopaedia even though I have led him to believe that the answer to many questions is “magic” (accompanied by appropriate hand-gestures and “woo” noises).

I’d be lying if I said my mental health hadn’t affected my children, particularly over the last year or so. They have had to go through things and witness things no child should ever have to be subjected to. The one thing I know I will never forgive the mental health system for is the effect their mistakes and negligence had on my children. I obviously feel guilty about my own contribution to what the children suffered but I know I couldn’t help it. I also know I repeatedly asked those who should have helped me to help- it’s not my fault they didn’t.

Even outwith times of crisis and given that the illness I have, dissociative identity disorder (DID) doesn’t just suddenly appear in adulthood but has been present in some way throughout my life, my mental health has affected my children and my relationships with them from the start.

Today, July 20th 2012, I can only remember one of the ‘starts’, I currently have no access to memories of my children prior to 2005, it’s as though I wasn’t there.

I wasn’t there.

I have a metaphorical book of facts; I can tell you birthweights, the ages at which developmental milestones were met and have the odd anecdote but beyond that- nothing. I have many photographs of the children, sometimes they can help access a memory of a time, place or event but it is to my eternal sadness that there are very few, if any photographs of me and the children. I’m terrified of having my photograph taken, in the few photos that do catch me, I look terrified. I have no proof that I was ever there and in the absence of feeling like I was there, this is difficult. The children don’t have DID, they do have memories and they often share them. Their accounts of me are usually positive so I take comfort from that. I also know that whilst I may not be able to access my memories of the children- they are there and I’m hopeful that, in time, they will become my memories too.

There’s no doubt that my mental health has had many negative impacts throughout the children’s lives but I’d argue the positives from having multiple Mama’s outweigh the negatives.

I am able to share my children’s interests- everything from the 18 year-old’s love of trains and foreign languages, to the 15 year-old’s love of reddit and shoes, to the 7 year-old’s love of Lego and Spiderman.

I am a very accepting person, anything goes. I have a moral compass that spins freely. Nothing my children do is unacceptable, certain situations may need a careful approach; some extra thought but nothing phases me. I’m slightly challenged by the 18 year-old’s support for Scottish nationalism (with a capital N) but there really is no-one better for him to discuss it with and I’m optimistic I can convince him otherwise but equally happy if I can’t. I frequently annoy the 15 year-old with my general ‘enthusiasm’ for things but she knows that it can be used to her advantage- be this in shoe or pancake form. The 7 year-old can vomit on demand at the dinner table should I stray from his desired diet of processed beaks and feet wrapped in batter, served with bastardised potato shaped into smiley faces, animals or letters but he knows I love those smiley faces, animals and letters as much as he does. I don’t stress over the little things, meeting the 5-a-day requirement in this house often includes the consumption of  “imagination salad”.

Thanks to my amazing powers of dissociation I am excellent in a crisis, should you back-flip into the corner of a table and sever a blood vessel there is no-one better to accompany you to A&E. I am a calm, reassuring presence even when faced with spurting blood and general distress.

I am fiercely protective of the children and attentive to their physical, emotional and environmental needs. This means I am happy to demand a same-day GP appointment in the face of cross-examination and insistence that such a thing is impossible from the receptionist. I am quick to challenge a school “behaviour policy” that uses shame to try and elicit compliance and should the children desire a mural on their bedroom wall or fairy lights in the kitchen than that’s ok too.

I am a good Mama.

So why today am I sitting here, worrying?

I’m worrying because tonight I have promised to take the now 18 year-old out for his first legal pint- out, to a pub. I don’t need to tell you just how challenging this is, I briefly began to consider all the known triggers and stopped when I got to double figures. I daren’t even think about the ones I don’t know about. I’m confident that I will appear well, it may be the quickest pint ever but I’m sure it’s something my son will remember forever and I’m honoured he chose me to share this moment with him. I’m pretty certain that the situation will be so stressful I’ll have no memory of it at all and I don’t doubt that it will cause some internal distress, but I’m going to do it- that’s what Mama’s do.

I’m worrying because on the 3rd of August my youngest son will return to my care full-time, having spent the last 9 months or so living with his father. I have stayed in contact with him throughout this period and it was always my intention to have him home when I felt well enough. The choice to wait until I was well enough wasn’t mine to make so he’s coming home a little earlier than I would’ve liked, I am in no doubt that this is the right thing to do. I accept it will be challenging and I accept that my progress, which to-date has been consistent and rapid will probably slow as I try to combine therapeutic work with caring full-time for two children again.

I’m worrying because although I know I’m a good Mama, I’ve lost a lot of confidence in my skills, I share the role with several others.  They all have something to bring and all have contributed in some way to the amazing creatures the children have become. I don’t expect it to be easy but I know, in time, I will get that confidence back. In spite of everything I have three securely attached, integrated little people to love and call my own.

Well I say little people- the 18 year-old is 6ft 2 with size 17 feet, I can only hypothesise that his father was a giant or a clown- perhaps a giant clown? I have no idea and I suspect, given my track record with men that some things are best left dissociated.

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Same Difference

Posted in Anxiety, depression, DID, Dissociative Identity Disorder, Eating Disorder, emotions, insight, insomnia, Internal Communication, labels, manic, mental illness, MPD, Multiple Personality Disorder, therapy, Told you it wasn't like Stephen Fucking Fry, Triggers, Uncategorized, tagged , , , , , on July 18, 2012 | 22 Comments »

I don’t fit, or at least if I do, I don’t know where. This feeling is nothing new to me; I’ve never fitted, always felt different. I suppose I should be grateful that at least now I know why?

I didn’t think I had a problem with being different, in fact I’m still not sure I do after all I can’t imagine I’d enjoy being normal. Just a quick reminder to anyone even thinking of saying or even just thinking “oh but what is normal anyway?” I don’t know, but I know what it isn’t. That question rates even higher up the irritation scale than any of the wanky platitudes, don’t do it.

When I went mental, I started to feel a bit like I wasn’t different anymore; I was the same as all the other mentals. But that’s just it, I am the same

as

all

the

other

mentals….

I have a lot in common with the depressed, the manic, the obsessive compulsives, the voice hearers, the eating disordered, the self-harmers, the suicidal, the psychotic, the delusional, the gender confused, the insomniacs, the narcissists, the anxious, the attachment disordered, the selective mutes, the substance abusers, the paranoid- I could go on…..

I can identify with everyone; I’ve been there, am often there and will no doubt be there again at some point. I suppose if we’re looking at transferable skills at least I can rest easy, safe in the knowledge that I have a promising future career in writing leaflets about mental illness?

I left a comment on a blog last week; it took me some 4 days of writing and deleting to actually click ‘submit’. My comment wasn’t anything controversial or even particularly interesting or important but it was different. The topic of the blog piece was labels- what we mentals call ourselves and are called by services. I’m a firm believer in self-definition but of course, for me this means selves-definition. My comment reflected this

I cut the comment short, I define myself in numerous different ways but I was feeling incredibly self-conscious about what I’d said.

So I feel different from other people like me, other mentals

I don’t fully understand why I felt so self-conscious, I’m not ashamed of having DID, I’m happy to talk about it. You may have noticed.

I feel like I ought to say “my illness doesn’t define me” but it’s simply not true. When your illness makes you believe you are more than one “me” it does tend to dictate how you operate.

I’ve felt uncomfortable within the Madosphere for a while, I don’t read many blogs at the moment and I comment on very few. Whilst I have something in common with everyone and can offer advice, sympathy and understanding in all and any situation, I shy away from doing so. I don’t feel unwelcome, far from it but I do feel very different and quite alone. The ultimate paradox of sharing your head/body/life with [number I will never reveal] people is that it can be incredibly lonely.

I know there are several people out there with DID, I read some of their blogs; I don’t even feel like I fit there. Why? What makes me so special? What makes me think I’m different from all the other multiples out there?

On paper, nothing. Whilst all multiples are unique, there’s a sameness about us too, we share similar experiences and face similar struggles. There are a few tangible things I can point to that make me feel out of place within the online DID community.

Other DID bloggers use different terminology to me, I can’t discuss this further as it’s triggering, therefore other DID blogs can be triggering for me. So I’m like the meanie of the madosphere, I have no blogroll and generally don’t follow blogs. I have some in my reader as then I can carefully choose when to read them. I tend to avoid using terminology at all, I slip in the odd technical description but my story-telling approach to blogging often doesn’t call for it.

Other DID bloggers share names, I nearly fled Starbucks in terror last time I went and they asked for a name to put on my drink (why do they do that?!). I can’t work out if my reluctance to share names is symptomatic of the denial that we had any for so long or indicative of my overall secretiveness. I’m happy, for the most part to hide behind the collective noun, it feels safer that way.

Other DID bloggers share system information, I am like the MI5 of the multiple world when it comes to sharing information. I think it would make me feel incredibly vulnerable and unsafe to detail parts of my system.

Other DID bloggers talk about therapy; I allude to it but can never imagine retelling a session. I’m not ashamed about what happens in session, I often don’t know and am in no doubt that it’s always overtly mental but I think that therapy is for me, whoever I may be on the day and the <?> therapist.

Other DID bloggers talk about trauma. I have no trauma. I know that’s the typical multiple response but I genuinely have no memory of trauma. Sure my childhood was less than perfect and I can remember a lot of the less than perfect bits- which suggests they don’t count as trauma, but more unhelpful additions to a psyche that was already teetering. I can’t imagine if I ever uncover any trauma *clings to denial* I’d want to share it outwith therapy though.

So I feel different from other people like me, other people with DID

I’ve done the sums and if I’ve correctly identified ANPs (apparently normal parts) and EPs (emotional parts) I am 63% normal or apparently normal anyway. So the majority of the time, I’m technically, apparently normal. Twenty minutes in a room with me however and it becomes glaringly obvious that in spite of the mathematical evidence, I’m not normal. In fact, you don’t even need to be in the same room as me, anyone who’s ever received an email from me will know that bits of apparent normality do not compound into something totally normal, indeed it has the rather opposite effect. Those of you who’ve been lucky enough to receive hand-written correspondence from me (always unsigned but you can tell it’s from me as you recognise the handwritings) will appreciate that whilst there’s no doubt I can be normal and often am, all the normal together or even just a few of the normals together at the same time makes something completely abnormal.

So I feel different from other people like me, normal people

I think I feel different because I feel different and have always felt different. It’s causing me some angst it’s fair to say, especially as I think I’d be equally angst ridden to find out I was just the same as everyone else.

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InequaliTy

Posted in activist, Anxiety, bipolar, depression, diagnosis, DID, Dissociation, driving, hospital, illness, insight, Internal Communication, mania, mental illness, MPD, Multiple Personality Disorder, NHS, parenting, politics, Triggers, tagged , , , , , , , , , , on June 27, 2012 | 25 Comments »

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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