Feeds:
Posts
Comments

Archive for the ‘NHS’ Category

Functional Dysfunction

Posted in blogging, children, lost time, NHS, Sadness, single-parent, Spiderman, therapy, tagged , , , , on August 24, 2012 | 11 Comments »

This is a functional blog post, the past week or so has been a bit of a blur. It’s clear I went mental but as it was the quiet kind of mental as opposed to the screaming/road trip/helicopter/bloodshed/trip to the bin kind of mental there is very little evidence as to what actually happened. I have to admit I’m somewhat grateful that the selective mutes were running the show this time, I’m sorry to all of you who worried in my absence but it’s much easier to come back when there isn’t a trail of [visible] mental carnage to clear up.

In my experience there is little as effective as the WordPress “new post” screen to help fill in some of the blanks. Besides I’m also trying to avoid some essential but terrifying internal work that’s become necessary following a new discovery, well new to everyone else, I’ve known for ages- I’m just not sure why I never mentioned it. I’m a mystery even to myself.

I only know I went mental as others have told me, there are no tweets, Facebook updates, emails or text messages to give me any clues. The best clue I have is this snippet of conversation I remember from today’s session with the <?> therapist-

The <?> therapist “do you remember speaking to me during Monday’s session?”

Me “no, are you sure it was me?” (I think I managed to avoid admitting I thought it was Monday today, but I can’t be sure)

I often wonder if therapists who treat DID come back to these kinds of conversations later, perhaps over dinner and think “WTF?!”  I’m very glad that those who know what they’re doing can resist the “WTF?! face” during sessions, it’s a face I’m very familiar with having become acquainted with a number of health ‘professionals’ in my time.

I was there, in body on Monday- for the full hour and a half- but it wasn’t me.

I talked about lost time in a previous post and clearly that’s what’s happened again, it just happened for a very long time. As I described in that post just because I’ve lost time doesn’t mean things haven’t got done, on the contrary it appears life has run quite smoothly in my absence.

The house is no messier than usual, there’s even a clean teaspoon in the drawer, the children are well cared for and the stupid car has a new timing chain. I have no recollection of going to a garage and indeed no idea what a timing chain is but I know the total bill for parts and labour was over £500. I’m very glad I still have the overdraft limit and credit card limit of “someone who has a decent income” as opposed to “benefit scrounging scum”. I haven’t been this poor in a number of years, it’s painful and unjust and what with it only being 122 shopping days until triggermas I have a feeling I’m going to need to hold onto that “mañana” attitude to finances lest it becomes something else to add to the very long “things that make me mental” list.

So I went mental, but it’s ok as you can’t tell by looking. Dissociative identity disorder is often described as “amazing” it’s an “amazing survival mechanism”, an “amazing way to cope with an intolerable situation”, “amazingly complex”.

DID is amazingly tragic

I don’t know what happened this week, I don’t know why and I don’t want to know but I can’t imagine that I’ve spent the week blissed out, feeling fulfilled, content, generally unperturbed and satisfied by life. I suspect I never so much as cried the whole time but I was clearly so distressed by something I chose not to speak- for 6 days. Other parts did any speaking that was necessary and I’m glad they did as it allows life to continue- for those around us. I’ve lost time and time stood still. My distress was hidden, from those around me, from those who care about me and from myself. It’s heartbreaking that an illness borne of secrecy continues to shroud itself in secrecy. I’ve been on the planet for 13,592 days, I don’t know how many of those days were so intolerably painful I’ve forgotten them, I don’t know how many of those days I’ve spent in distress whilst all around me life carried on as normal. I don’t know how many of those days I spent in need of comfort, comfort I deserved.

I’m grateful for my amazing powers of dissociation; they were useful again today when the 7 year-old was leaving for a week with his father. I was so distressed by the prospect that packing his Spiderman costume made me feel physically sick yet I was able to pack, collect him from school and send him off to his father’s appearing well the entire time.

The pain and distress doesn’t go away, it simply gets stored and it all has to be dealt with another day. I’ve done 13,592 days, I can’t guess at how much pain and distress I’ve stored over that time. I do know that it’s going to take more than 182 days to address it though which makes the letter I received from  NHS Fife advising me I’d been awarded another 6 months funding for therapy laughable at best. 6 months; 72 hours of therapy- that’s barely enough to recover from the pain and distress caused by the iatrogenic damage inflicted by NHS Fife, never mind anything else.

Read Full Post »

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?

Read Full Post »

A Girl Worth Fighting For?

Posted in communication, crying, diagnosis, DID, Dissociation, Dissociative Identity Disorder, Fab Psychologist, Fantastic CPN, friends, hypervigilance, insight, NHS, social worker, support, Told you it wasn't like Stephen Fucking Fry, Triggers, Uncategorized, tagged , , , , , on August 4, 2012 | 3 Comments »

It’s been a dreadful week [again] thanks to my amazing ‘insight’ which I’ve actually decided isn’t insight at all, simply knowledge and knowledge I only have as the other people I share my mind/life/body with choose to share it with me, I know why.

Having thought about and discussed the events of the week I’m left in a quandary [again] as to what to do with my new found knowledge.

Thinking back to the social work assessment I mentioned briefly in my previous post- I know what went wrong.

One of the peculiar upsides of DID is the ability to recall events from a third- person perspective, it scares the shit out of you when you first realise that not everyone ‘remembers’ things this way but you soon learn to file it under ‘handy skills’ with the rest of the ‘mental but useful’ stuff- like always having someone available to paint the nails on your dominant hand. So I’ve replayed the tiny portion of ‘film’ I have from Wednesday and watched it multiple times.

The assessment began ok, the right set of skills were present but around 8 minutes in, when the questioning turned from “name, address, date of birth” to “so tell me about [redacted]” it all went horribly wrong. At that point I left the room- I think it was under the thinly veiled excuse of “going to ground myself” but this was a classic trauma response- fleeing, running-away. I wasn’t going to ground myself at all (for the most part this is something I’m still incapable of doing except in very controlled circumstances); I had switched and from that point on had totally lost control of the situation and my mind. The assessment should’ve ended there instead of continuing to compound the trauma and chaos. I’m torn between thinking it was my responsibility to call the assessment to a halt at that point and feeling horribly let-down that the Fantastic CPN failed to notice what had happened at a time where I was unable to see it.

I’m very selfves-sufficient, whether this is borne out of strength or a complete inability to trust or rely on anyone else is debatable. My pathology suggests the latter. Self-sufficiency morphs all too easily into taking responsibility for everything, which in turn just becomes guilt and cries of

“It’s all my own fault”

To be fair though, I have very little evidence that it’s safe to trust or rely on anyone else. Again, my pathology suggests this mindset is firmly rooted in my distant past but two years or so of being let-down and betrayed by the mental health profession is fresh in my mind- unlike the distant past.

It’s all become a bit cyclical.

So I know what happened, what I don’t know is what to do next. I am driven, compelled to educate anyone and everyone about DID. I do this obviously here on one of the best blogs on the internet when I discuss the details, I also do it here and elsewhere subversively just by being who I am and saying what I say. This I can cope with, in fact I enjoy it or I wouldn’t do it. If, by telling my story more people learn about DID then that’s a bonus. What I don’t enjoy is the continued fight to get those who should understand to understand.

I’m told the social worker responsible for the shambles that was Wednesday felt “really bad”- she phoned the Fantastic CPN to tell her this, adding helpfully “I felt like I’d abused her”, the Fantastic CPN in turn then told me this. On one hand I’m glad the social worker was able to recognise she’d made several grave errors but I could’ve done without having to accept the guilt of someone else, particularly someone who had caused a lot of damage. I’m also still waiting for her to contact me to apologise…….

I’ve pondered over whether there is any point sharing what I know with those who need to know it. Is there any point in me telling those who made mistakes what those mistakes were or do I just cut my losses, stick to those who do understand and keep myself safe?

Obviously if I share what I know I have the ability to prevent something similar happening to me again. Though as the social worker made it quite clear I was the wrong kind of ill for the support they had available then gave me some bullshit about how I wasn’t eligible for direct payments as I had no physical care needs, I doubt I’ll be seeing her again. If I share what I know then perhaps the next person like me won’t have to suffer in the same way? How will anything ever change if nobody tries to change it?

I don’t think I can change it. I don’t think I can make people who can’t or don’t want to understand, understand. If the social worker cared enough to try and get it right, she would’ve done some work beforehand, perhaps even contacted me, maybe emailed me the assessment form so I could’ve looked over it, and seen it was far too triggering and not bothered with the assessment? If after all this time the Fantastic CPN still thinks it’s ok to say “I know it was dreadful but you did ask for it” then either I’m explaining things badly or I’m wasting my time.

I suspect this is how people with DID end up with no support. When support becomes something that poses a potential risk, it’s safer for us to go without.

I’m tired of the fight; I’m tired of not fitting, not being what those who should be helping me need me to be. I can’t imagine if I had the kind of illness that presented in a more traditional way, if, for example I wept throughout the assessment on Wednesday that those two professionals would’ve carried on. The fact that I switched chaotically and constantly was probably missed by both of them- except that I do recall saying at one point around 20 minutes in “I don’t know; I’ve only just got here”. I’m aware a lot of my switches can be subtle but when I had verbally drawn attention to it, perhaps it was time for someone to step in and protect me when it was clear I was incapable of protecting myself?

I’m tired of the fight; I’m tired of having to fight by myself for myself. My complaint about NHS Fife is still with the SPBO, it came to light a couple of weeks ago that they didn’t have any of my notes from the Fantastic CPN- I had to contact them to tell them this. It came to light this week that they didn’t have my notes from the Fab Psychologist- I had to contact them to tell them this. I had to send copies of emails between myselves and the Fab psychologist to them as they didn’t have them either. I’m losing the fight, the process is too triggering and I know that the important bits, like the conversation between those in my ‘care’ team where they decided not to help me obtain the correct diagnosis as they believed it would be stigmatising for me, won’t be written in any of those notes anyway.

I’m tired of the fight; I’m tired of having to explain DID to people who I need to help me.

After the assessment on Wednesday I turned to friends for comfort, I relayed 3 of the questions I could remember and immediately friends replied “they should have known how triggering that would be for you” so again- friends get it. None of my friends are qualified experts in trauma and dissociation but they get it. I’m told by them, they get it because I explain it so well. I think it’s more to do with the fact they are willing to listen, accept, learn and care.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

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.

Read Full Post »

Helping The Help

Posted in #MadParisJolly2011, art, Awesome Psychiatrist, bipolar, blogging, communication, crying, depression, diagnosis, DID, Dissociation, DSM, emotions, Fab Psychologist, health, hospital, insight, Internal Communication, labels, Lovely GP, manic, medication, mental illness, MPD, Multiple Personality Disorder, NHS, psychiatrist, stickers, suicide, The Fear, therapy, Told you it wasn't like Stephen Fucking Fry, tagged , , , , , , , , , , on May 25, 2012 | 23 Comments »

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

Read Full Post »

Mental For Five Minutes

Posted in activist, benefits, blogging, Celebrity Mentalism, DID, mental illness, NHS, Told you it wasn't like Stephen Fucking Fry, Twitter, tagged , , , , on April 24, 2012 | 56 Comments »

This has been swirling around in my head for years, so far I’ve kept it to rants on twitter in 140 characters or fewer but it deserves more words.

Today’s twitter rant actually leapt over the line from ‘rant’ to ‘just plain old abuse’ I don’t care-


It was a long time coming.

To quote, from the Rethink article

“We wish her all the best in getting through this difficult time and commend her for her continued honesty when it comes to talking about mental health.

 When celebrities speak frankly about mental illness they go a long way in helping to break down the stigma that still surrounds it.”

It’s a commonly held misconception with MH organisations that celebrity mentalism does anything at all to break down stigma. I’ve had this conversation calmly with Rethink and others in the past; I’ve also tried to get Rethink to make reference to dissociative disorders and DID on their website, they gave me some lame excuse about not having information available, I told them where they could get information, I offered to write information they still haven’t done anything about it.

That is stigma

Being afflicted by the MH equivalent of leprosy I am all too familiar with stigma, most of it comes from the NHS but the fact that MH organisations such as Rethink and SAMH refuse to make any reference to dissociative disorders or DID does nothing but compound the idea that it is the illness that must not be spoken of.

I am eternally grateful to Mind for their leaflet on dissociative disorders, it’s a great place to start for information, my only complaint is that they even address the ‘does DID exist’ issue (see ‘other theories’), to be fair they handle it very well but until mainstream literature stops even considering whether DID ‘exists’ or not, people will continue to question it.

So my rant at Rethink today has a bit of a history but my original point and one I have made many times is that celebrities ‘confessing’ to having mental illness does nothing other than provide a bit of a news flurry, an opportunity for the media to tie themselves up in knots about semantics and a few interviews, maybe a book deal for the celebrity in question.

Celebrity experience of mental illness never reflects the day-to-day reality for those of us living with a mental illness. I accept that the way celebrity and the media work are probably to blame for this but we cannot challenge stigma with

Has breakdown- goes to Thailand- is all better now.

Or

Has breakdown- keeps job- writes books- gets more jobs- is all better now.

Or

‘Catches’ bipolar- goes to clinic for 4 days- drinks smoothies- makes film- is all better now.

Or

Has breakdown- goes to Priory- enhances career with a touch of mentalism- gets more jobs- is all better now.

Etc.

My frustration is both personal and on the behalf of the many people I have come to know and love who are struggling with mental illness. All of these people have ‘bravery’ and ‘honesty’ in bucketloads- and the MH organisations follow most of them on twitter so see their stories unfolding every day. Day-to-day existence with a mental illness is grim, protracted and painful. Mental illness is pervasive; it destroys lives and steals futures. For most of us getting any care and treatment is a fight, getting the correct care and treatment is a fight, for most of us neither Thailand or the Priory is an option- if we can make it through the humiliating, degrading DLA and ESA application processes without attempting to end our own lives, we may have enough money to scrape by on.

Celebrity mentalism and the discussion of it could be a great platform for more useful discussion- discussion that perhaps does something to effect change, something tangible, but it rarely is.

Every day I have to watch people I care about going without care and treatment, being refused help, being mistreated, struggling, fighting, being brave. I’ve yet to meet anyone who has got what they need, when they needed it. I’m currently watching someone I love very much suffer through months and months of having no hot water due to massive incompetence on the part of her housing association, she’s got sicker as a result- I don’t see Rethink jumping in with a statement of support.

Mainstream media does and will always use celebrity mentalism as a platform for nothing more than gawking but I think we should expect more of MH organisations.

There is an army of honest, brave, frank bloggers within the Madosphere (most comprehensive blogroll here at TWIM)- all of them challenge stigma far more than any 15 minute interview with a celebrity (and you’ll note that those interviews are all ‘when I was mental’).

All of these bloggers provide education and information about mental illness- and any of them could be your next door neighbour, your daughter, your son, your boss, your postman, your GP, your child’s teacher, the checkout operator at Tesco, your friend. They just might not be famous enough to make the difference they deserve to make, they just might not be famous enough to really challenge the way you think about mental illness.

Read Full Post »

Imparting Knowledge In Story Form

Posted in blogging, diagnosis, DID, Fantastic CPN, mental illness, Multiple Personality Disorder, NHS, Told you it wasn't like Stephen Fucking Fry, Uncategorized, tagged , , , , , , on April 1, 2012 | 27 Comments »

I’ve thought a lot about the blog- how it should continue, if it should continue at all. As a Madosphere blogger I feel I have a responsibility to talk about mental illness, to challenge stigma, to help people try and understand what it’s like. But I don’t want this blog to become ‘a DID blog’ there are plenty other great DID blogs out there and anyone who is literate and has rudimentary internet skills can find loads of information on DID. I want this blog to continue to tell its part of the story.

It’s been 3 weeks and 3 days since I was declared ‘officially DID’ or as I prefer ‘officially multiple’ and in those 3 weeks and 3 days, as I predicted- nothing has changed, I’m still waiting for the ‘right help’ with no idea what the right help will look like when it comes, if it’s coming and if it will be right and help. The day my broken leg was confirmed I was given a plaster to put on it, not a plaster cast- an elastoplast. Whilst this was the best elastoplast I had ever been given it washed off in the bath the next day. So my leg is still broken and it still hurts an awful lot.

The NHS don’t do DID (although NHS Fife did tell me in response to complaint number 2 that “our staff are very experienced in dealing with dissociative disorders…” they were referring to the staff in the last bin I spent time in. Yes that’s right the bin I entered barely able to complete a sentence with a stable identity, confused, suicidal, distressed- basically very mental indeed. The bin I left less that 24 hours later having being assessed by the nurse in charge as ‘seeming perfectly rational’. Needless to say the complaints process is ongoing, I’m not sure it’s making any difference whatsoever and its quite clear the people dealing with the complaint know nothing about DID but it needs to be done.) There are no NICE guidelines for dissociative disorders and it appears in the absence of knowing what to do- the NHS do nothing. My current ‘treatment plan’ revolves around 4 zopiclone a day so I may drug myself to sleep when it all gets too much. The Fantastic CPN is being as fantastic as ever and those few hours a week are precious. I’m not sure the CPN agrees, I imagine it’s a lot like being ambushed.

I am currently waiting for a private sector provider to draw up some sort of ‘something’ I actually don’t know what. I do know that this ‘something’ will have to be paid for, I also know the NHS Fife funding panel meets on the 4th of April, I don’t know if we’re going to make it and if we do, will we be considered worthy of the cash?

One of the most difficult things about being officially diagnosed is that you don’t always believe it, you don’t always even know it’s happened, you don’t think it can be right sometimes, it’s confusing and upsetting- there are days when the realisation that the devastating diagnosis, the one thing we never wanted it to be- is true. Then you get smacked in the face with the mental stick as you realise only a multiple can’t always accept they’re a multiple because not everybody inside agrees….

One of my favourite things about being mentally ill- aside from the great pay and decadent lifestyle has to be wanky platitudes. I get new ones now I’m a multiple-

“it’s an amazing survival mechanism, it’s helped you survive”

But it’s a survival mechanism that makes you acutely mental, eats your entire existence and destroys your life as you know it. It also makes you survive; regardless of how awful your day to day existence is. The whole ‘survival’ thing is a hornets nest in itself, another blog for another time maybe?

“We are all in ‘parts’”

Yes, I agree everybody has different parts of themselves- for most people however these parts work seamlessly together and manage to represent the person with the parts as a whole, functioning human being.

Most peoples ‘parts’ don’t act completely independently of each other, they don’t seize control of the body and go off and do their own thing- without telling any of the other parts. Most peoples ‘parts’ don’t get up in the night, attempt to remove a limb and leave another part to clean up the damage. Most people’s ‘parts’ don’t buy things from Amazon that invariably get collected from the postman by another part who has no idea what to expect when they open the package. Most people’s parts don’t buy their own clothes (opening the wardrobe in the morning makes me feel like a mental Mr Benn), most people don’t have two or three parts that believe they are not parts at all but are in fact completely able to live independently, most people’s parts don’t send emails, write notes to each other, have conversations with each other……. I could go on.

“They are all parts of you”

This has to be my favourite, I lied, I fucking hate it. In fact I hate the term ‘parts’ they’re not ‘parts’ they’re ‘people’. I’ve developed a new response for this kind of thing ‘I know logically you are correct but that’s not the way I feel’ this response makes me sound calm, rational and accepting. It’s actually cover for

‘Uh-huh right….? You are talking shite, I don’t believe you for a second but I know if I say that out loud it’ll sound mental’ (and we wouldn’t want that).

So I’m still here and it’s April- I survived March. It’s not getting any easier, every day is painful, long and disjointed, I still have absolutely no quality of life and I fear even when the right help comes there will be little or nothing left to save. If I’m not doing/saying/thinking things I don’t want to I’m almost incapacitated by ‘head noise’. I’ve always complained of head noise but I’m not sure in all my time in the MH system anyone has asked me to define it. I found this short film, it’s not perfect but it’s close, enjoy.

Read Full Post »

Older Posts »