The madness of the NHS and therapy funding for Dissociative disorders

I am often asked how I was able to get NHS funded treatment here in the UK and given I know there are so many people struggling to get the same help I decided to write this post.

Like many people I had to fight for treatment, a long and often destabilising fight to get those in authority to see that long term specialist therapy made sense given it’s the only internationally recognised treatment for Dissociative identity disorder.

Looking back it still seems strange that I had to fight for help which has in fact saved the NHS thousands, but fight we did. If I’m honest I couldn’t have done this without the support of my daughter who would often challenge the beuracracts when I wasn’t able to. At times we wrote letters, telephoned the funding bodies repeatedly, and utilised social media when we could.

Research* clearly indicates the financial benefits and cost savings achievable when a client with a dissociative disorder is given long term talking therapy. It demonstrates the financial madness of refusing treatment and yet CCG’s across the UK still refuse individuals applications for therapy funding.

Given research demonstrates that at least 1% of the population has some form of dissociative disorder isn’t it time the NHS took notice of these facts instead of wasting ££ by not treating people.

A single A & E attendance costs ££, as does each crisis intervention. In fact every single contact with a health professional incurs a charge. Yet many DID clients are left floundering from one costly crisis to another and yet are still refused funding for therapy, the one treatment internationally recognised as beneficial. In fact every time I spent a week in hospital cost money and given I spent 200 weeks as an in-patient this often unhelpful intervention cost far more than my therapy ever did. These costs were at first reduced and then eradicated as I recieved therapy. In fact I’ve not had a single admission since my therapy started saving the NHS tens of thousands of pounds.

The potential for cost savings by giving therapy is huge and I mean HUGE!!! And these financial benefits are relevant to many many people with a dissociative identity disorder. Yet the NHS still blocks funding in the main, its as if the beauracrats cannot see the financial gains they can achieve and their understanding of DID is often not existent.

So my advice to others here in the UK is challenge every refusal, lobby your Medical team be that a GP or a psychiatrist to get them on side and then lobby your local CCG (clinical commissioning group) at every turn. Use social media to contact the chief executive of the CCG, and their mental health lead too. Contact your local MP and get their support as well and If you are able to perhaps consider if local media might help. Basically its Challenge, challenge, challenge.

Outline continually the research evidence which shows the cost benefits and the ISST-D ( international society for the study of trauma and dissociatiom) international guidelines for treating dissociative disorders. If you can obtain through a freedom of information request the costs attached to each crisis intervention and medical contact you have had, if you’ve been an in-patient obtain these costs, basically try and demonstrate how much it’s costing them already by not giving you therapy. I learnt recently that back in the dark days when I was suicidal and went missing from home the costs were huge. In fact £8,000 to just ping a mobile phone mast and that’s more than the cost of 1 years therapy.

I know how fortunate I have been to get my treatment in the NHS and know first hand tbe enormous benefits of long term talking therapy. So now my treatments over I aim to work to get the funding madness changed, with this in mind I recently had a meeting with my local CCG to raise the treatment of those with DID in my locality who sadly were being rejected for funding at every turn. It was a useful meeting and I hope will prove fruitful in the end.

They are so many CCG’s failing those with dissociative disorder and it needs to stop. I intend to lobby as hard as I can to get those in power to see the financial madness of not funding therapy. So if you are fighting for funding let me know I’m happy to offer advice where I can. It’s time this madness of NHS funding was stopped and the treatment proven to be beneficial to recovery and financially sound is a right not a fight.

* research by Dr Mike lloyd ‘ How investing in therapeutic services priovides a clinical cost saving in the long term’ as featured in the health services journal.

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What is DID? A brief 16 step guide.

This week I have found myself in London trying to explain DID to a journalist. Funny how suddenly facing a microphone forces one to become more succinct and yet I do find it hard to explain dissociation and how it impacts my life. This got me thinking that maybe others would find it helpful to have a basic intro to DID.

This post is therefore a very basic guide to dissociation and DID.

Dissociation

1. Dissociation is something we all do, when we go on auto pilot or take a regular journey and suddenly realise we are further along than we thought.

2. Dissociation is only an issue when it becomes dysfunctional.

3. It is an effective survival mechanism blocking painful unbearable memories.

4. A sane reaction to insane circumstances

Dissociative Disorders

5. There are 5 types of dissociative disorder, dissociative depersonalisation, dissociative amnesia, dissociative fugue, Dissociative identity disorder and other specified dissociative disorder. The most extreme is Dissociative identity disorder (DID).

Dissociative identity disorder

6. DID means a person has 2 or more distinct identies with their own unique perceptions, thoughts, feelings mood and memory.

7. Yet each part is a part of one person, one body.

8. DID is often caused by traumatic events such as childhood trauma.

Myth Busting

9. DID is not a personality disorder

10. It doesn’t mean the person has 3 heads.

11. Unlike the portrayals in the media people with DID in real life are no more likely to commit crime, harm someone or be a danger than anyone else.

Symptoms (based upon my own experience)

12. For me the symproms were many and varied and included: Loss of time, confused identity, gaps in memory, internal voices, feeling detached, disrupted sense of self and sense of place, self-loathing, denial of trauma, nightmares, flashbacks, suicidal thoughts, self harming. Broken relationships, often buying the same thing multiple times.

13. For someone with DID life can be very chaotic, and at times frightening.

Treatment options.

14. International guidelines recommend that long term talking therapy is the only effective treatment for DID.

15. Long term talking therapy is very cost effective, research shows that it reduces emergency department visits, Crisis interventions and hospital admissions.

16. It is actually cheaper to provide therapy than to leave people with no provision.

Helpful sources of info.

First person Plural – firstpersonplural.org.uk

An Infinite mind – aninfinitemind.com

ESTD – estd.org

Living life successfully – what does progress look like

Progress comes in many guises, but long term talking therapy can make huge differences to a persons life. During the past eighteen months I have felt myself shift and change, as I began to learn more about myself and the different parts of me. I’ve come to realise that hope is possible, and those with a dissociative disorder can live life successfully.

If someone had told me ten years ago when I was stuck on a psychiatric ward that there was hope I wouldn’t have believed them, but I can honestly say that with the right help and support things can work out okay. I have now had 3 1/2 years of therapy with my psychologist during which time he has helped empower me to rebuild my life and find the real me.

As many of you who follow my blog regularly will know my initial funding was for 3 years, yet last year my psychologist and myself decided that there was still work to be done and so a further funding request; supported by my local mental health trust, was submitted to my Clincal commissioning group for an additional year, thankfully they agreed and hence I have benefited from this additional time.

Now in the last few months of my therapy, I’m moving forwards and rebuilding my once shattered life, I have learnt to understand that I have the tool kit within me to live life successfully.
I have learnt to say no to external pressures, placing myself at the forefront of decisions and taking into account my needs. I established the level of self care I need to ensure all of me is content, I ensure I take time out to reflect, to talk internally, to meet my needs and that includes the needs of all the differing parts of me. Internal dialogue has been key to this and I’ve developed an awareness of my parts, enabling me to be more responsive to my needs, to be aware of triggers and how to respond to them effectively. Building a rapport with the various parts of me has enabled us to work together, to become more integrated and more as we really are one human being with various configurations of self, who just happens to have a dissociative disorder.

I’ve learnt to understand why I react the way I do to certain things, to accept emotions and process these feelings rather than run a mile from them, which was my previous default setting, I feel as if I’ve rewired myself internally, my negativity being replaced by an open minded ability to be more positive. I’ve eradicated negative destructive thinking, conditions imposed upon me by my past and learnt to see them for what they are….lies and bullying. So I no longer view myself as worthless, instead accepting this was a value placed upon me by bullying abusers. I now accept I can make decisions, no longer thinking I am useless and at the mercy of others – as my abusers told me. The previous desire to be ‘perfect’ has long gone as I now see that this is both unattainable and draining, a construct forced upon me by my female biological parent who told me I was never good enough to  be loved. Instead I now accept that being ‘good enough’ is okay, that I don’t have to prove myself to anyone. My valuing system has gone from being very external to an internal one, where my views about me matter most, not the demands or judgements of others. I’ve learnt that I don’t have to please others, or conform, I can quite simply be myself.

All of these changes I now accept as progress, as learning how to live with DID has had a dramatic impact upon my life, it’s changed how I view myself and the world, but it’s also enabled me to stay up front and not lose time. The best way to explain this is as if I’m at a bus queue, me first and the parts in the line behind me, where previously they would jump in front and I’d lose time, now instead we are more in tune, we talk, we take account of our needs and as a result they don’t jump ahead taking over and I don’t lose time. I haven’t eradicated the parts of me, far from it, instead I’ve learnt to embrace them, accept them and take them into myself. I view myself as a team of parts, who all work together so we can live life with DID, rather than letting the dissociation control us.

None of this progress would have been possible without the right support and talking therapy is integral to this growth, but I am also aware of how much effort I have put into this journey too.
I attend each session ready to learn and to grow, ready to take on board what is being said, to undertake the homework set and acknowledge that I won’t learn or grow if I don’t put the effort in. Quite simply therapy is a collaboration between a therapist and a client, one offering the other the compassion, empathy and understanding that allows growth to occur and the other bringing an openness to trust and a desire to grow. It’s a process that requires both parties to be in tune with each other and to be willing to work hard. I’ve realised how vital the therapeutic relationship is in this process there needs to be respect and acceptance and a level of equality between both parties.

At my first session my psychologist told me that he had no magic wand and that I would see him for one hour a week and the other 167 hours were down to me, he emphasised that I needed to be ready to work hard. At the time I really thought why is he challenging me, I want to get better doesn’t he realise this, but looking back I see his words are so true. There were times on my journey preceding this therapy when I had given up hope, when I expected a magic wand from a medical professional, when I really didn’t understand that recovery comes not from a doctor or a pill, but from within yourself. I had become entrenched in a battle with medical professionals seeing them as someone to fear and dread, not accept them as someone who wanted to help me. I know this was because of how I was treated along the way by misguided and misinformed professionals who sadly didn’t see me as a person, the medicalised model has a lot to answer for. Yet I soon realised my psychologist treated me as an equal, he respected me and was genuinely interested in my views, my thoughts.

I have no doubt recovery wouldn’t have happened without my psychologist, but no matter how good he is, recovery wouldn’t have happened without me the client being open to learn, to grow and put in the effort. At times on the journey it’s been painful, I’ve doubted what he has said, but I’ve stuck with it trusting that he knows what he’s doing. Internal dialogue is such a case in point and yet I worked at it, likewise I jumped into the sea and paddled because he told me to go have some fun, I ventured into the kitchen and worked at collaboration because he gave me the tools to do so without dissociating. I’ve trusted his judgement and learnt to trust myself along the way, I’ve trusted enough to share my deepest pain, to cry and to grieve for my past. I’ve trusted enough to stop blaming myself for the abuse and instead process the anger, and acknowledge it’s my abusers I’m allowed to be angry with. I’ve learnt a myriad of emotions and how wonderful these emotions really are, so instead of running from them I can now embrace them.

It’s been a rollercoaster of a journey and it’s not at the end yet, I have six months to go during which time I’ve no doubt I will grow even more. But right now I can safely say hope is possible, no matter how dark it gets, and everyone can with the right help and support learn to live life successfully with DID.

To discuss trauma or not?

Over the years I have encountered many therapists, I have seen people of varying levels of expertise and the way they work has been very different. Most of those who I saw in the past had a keen focus on the trauma itself, desperately wanting me to regurgitate the events of my childhood. But is that the best approach for recovery, does it help to go over and over the bad things that happened.

 

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Due to my dissociation I have many gaps in my memory of my childhood, my brain has been good at protecting me and locked many horrors away. I have found over the years those memories spilling out into the here and now, snap shots of trauma which often haven’t been the full details of an incident. The memories have often been just enough to give me a clear idea of the event, what happened without all the terrifying finer details. Sometimes they have been drip fed to me, so a snippet of the event one day and then a week later another piece of the event. Weeks pass and eventually the whole horror of an abusive event has been revealed. Other times the memories come flooding back in an instant, with a flashback or body memory overwhelming me and sending me into a bit of a frenzy.

 

There are times when I really can’t cope with what I’ve remembered, it becomes too overwhelming, too consuming, and yet I have learnt to process in a better way too. So I can say I can’t deal with this particular trauma memory now I need to wait till therapy to think about this in any detail, it’s my way of protecting me. I can now accept sometimes that I’m not at risk right now, but it’s not easy and any trauma memory holds feelings of terror and pain.

 

Trauma and abuse have been a significant part of my life, it started when I was small and continued for years, in fact all through my childhood. I can’t name all my abusers but I can at times see their faces, I can tell you much of what happened because my memory has now revealed many of the horrors I endured. But I still have gaps in time and I still have periods of abuse were I only have part of the memory.

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In therapy for much of the early years of treatment, the professionals who treated me wanted me to share that trauma with them. They felt that me and in turn my alters revealing the past trauma was important to recovery. I would be encouraged to share the past, to regurgitate the horrors in all their gory detail, often through tears and great pain. Yet I never had the ability to process those memories, I never felt attached to them.

 

For much of my early years of treatment I felt irritated at the thought these people wanted me to share my inner most secrets. I recall one therapist and I falling out over the fact she would push for more graphic detail, when I felt it wasn’t needed. I didn’t feel able to share my secrets and I knew I didn’t have them all, my memory had stored them well away, locked out of even my reach.

 

 

One would push for information which I didn’t have, causing me to dissociate in session and thus losing time. She would expect me to spill the beans as she put it, yet I didn’t know what the fragments I had meant and I just wanted to understand. Throughout this time I wanted to know what had happened in my past, why I lost time and why I would dissociate. It just led to more and more confusion and concern, which at the time didn’t help me or my recovery.

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One therapist insisted on naming my parts and seemed to want to give them identities, I felt that my alters were totally different people and their memories were not mine but theirs. I now realise of course my alters are parts of me and the memories they carry are mine, locked away from me to ensure my safety and sanity at the time. I also now understand we all dissociate every single one of us, you and me, when we drive a familiar route and suddenly realise we are further on than we thought – that’s dissociation.

 

Of course I dissociated in a bit more of an extreme way, I switched off as a child to avoid the horrors of my abuse and it probably kept me alive. I know now that my alters are just parts of me, not separate people as such but fragmented parts of me, they formed when I dissociated as a child. Unlike most people who grow up in a seamless way, my 5 year old me wasn’t able to become 6 year old me she stayed locked inside of me – held by the terror of that time. Hence why I have lots of parts, lots of different bits of me who today are my alters, they carry memories of my past that I didn’t know. They need time, nurture, parenting if you like and they have skills and talents which I so value today, but until recently didn’t realise I had. Some have a function, like my protector whose job was to carry the frustration of not being able to protect myself as a child. I couldn’t protect me back then, but today she ensures we are safe and protected especially when threats similar to the past come to the fore.

 

So the idea of giving them separate lives and detailed identities wasn’t in reality so helpful, the memories they hold are my memories. I need to process those memories as my own not someone else’s. But do I really need to regurgitate my past in all its gory detail, do I need to try and reassemble each trauma memory in order to recover from my abuse.

 

My current therapy does involve trauma work, but not in all its minute detail, the aim isn’t to regurgitate the past as such, it’s to process the emotions that are attached to those memories. I don’t need to divulge every moment of a trauma event, but I do need to explore how that trauma impacts in my today. So I am having to process the emotions that go alongside the trauma itself, but I don’t have to start going through incidents in the way I was forced to years ago.

 

Processing trauma is an integral part of therapy but how that’s done can vary greatly from one professional to another, I know for me the key hasn’t been to regurgitate the past, it’s been to process the emotions that go alongside the trauma, those emotions that co-exist with the trauma. Emotions matter more than the actual trauma itself and learning to understand that and deal with them is so important on the road to recovery. I do not see myself ever regurgitating the past trauma again, it will be discussed in a more generalised way. Instead I will be focusing upon the feelings and how it impacts me now, rather than trying to remember every little detail of my past.

 

 

Copyright DID dispatches 2015

Delays in posting

I just wanted to update people, Sorry I haven’t posted for a couple of weeks now but life’s been a bit chaotic. I had a bit of a relapse a couple of weeks ago due to a trigger and so have felt quite fragile. I’m ok and trying to focus on just getting on with life, I am aware I’m  cramming my days full as a coping mechanism.  I need to stop and have a good old cry and then I should be able to get back on track. I realise this is all a part of me, my Dissociative Identity Disorder and the recovery process. Hope you can bear with me. 

I will post soon I promise. 

Thanks 

Carol 

Surviving a Therapy Break

For the past couple of weeks my psychologist has been on vacation and that has meant no therapy for me. Whilst a couple of weeks may not sound like a long break it hasn’t been easy and I find such breaks difficult to cope with. The reality is that a two week break has meant I’ve had no therapy now for approaching three weeks and that is an extremely long time. 

Now don’t get me wrong I know my psychologist is entitled to his holiday and I’m grateful he only takes a two week break, I’ve had therapists who take a whole month off. Yet it is never easy for despite all the stabilisation techniques I have learnt I always seem to find myself struggling, when there is a gap in sessions.

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Now I’m fortunate in many ways as I can still email my psychologist if it’s desperately needed, though I am not guaranteed a response. Previous therapists have just gone off on a break and left me high and dry which believe me is much much worse.
The break this summer hasn’t been easy and I have tried to plan ahead in order to mitigate the impact of no therapy. So for the first week I took myself off on holiday, surrounded by family who I knew would support me if needed. Having something to distract me helped and the holiday did work for the first few days. The second week I made plans to go out for the day and took myself off to the middle of nowhere surrounded by the sound of a babbling brook and beautiful scenery. The fact it rained wasn’t an issue but despite the attempt to distract and fill my time I found myself struggling,
As more and more thoughts raced through my mind and I began doubting myself and my own self worth, I realised things were not going great. The longer the break the more I struggle or so it seems and by the second missed session I was floundering, in the end I had to resort to sending an email, disturbing my psychologist and admitting I was finding things tough. The main concern for me wasn’t a flashback or a memory as such, but the feelings of anger and frustration I felt about the abuse I had endured. I also found myself consumed with grief once again, grief about my past and grief that these things, these dreadful things hadn’t just happened to an alter, they had happened to me.

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In the end as I typed my email I realised I needed to vent, I needed to let go off the anguish that was consuming me, overwhelming me. I knew that the best thing I could do given I had no idea if or when I’d get a response and that even if I did my psychologist wouldn’t be able to rectify how I felt was to vent. So in true style I opened my car window and screamed at the top of my lungs and poured out the anguish and anger. I cried buckets in the process and I guess most of all I admitted to myself these feelings of grief that I held.
My screams and tears helped a little but they couldn’t take away my fears or concerns about messing up, or my worries that I’d get it wrong with my teen alter. Thankfully my psychologist responded the next day and his words well they kind of resonated within me. He told me not to forget I wasn’t meant to be my alters therapist, that I wasn’t in this alone and to remember we were a team. The fact that he can assist me in my sessions and help me to process the anguish, the pain and the grief is reassuring. The fact I’m not alone of this journey of recovery is a positive, the reality is I have a therapist willing to help me on my journey and together we are a team.
Yet of course the break in sessions has been difficult and I have found it at times over whelming, currently it is a team of just me and my alters for my psychologist isn’t here, he’s away. This coming week sessions will reconvene but as is normal I am likely to find it hard for the first couple of sessions after the break. I can’t help this its just a fact of life, for me a break impacts upon my trust levels and my therapeutic relationship with my psychologist.

 

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Breaks in sessions are never easy there have been times in the past when I have spiralled out of control and resorted to negative coping strategies. Yet today I find myself more able to cope and the fact I have email access is a huge benefit. The truth is being able to see myself as less isolated helps me and the stabilisation work we have done is really beneficial too. But an absence of two sessions is as much as I can cope with currently, I am so relieved that after this weekend my sessions recommence.
Looking back I’m glad I now work with someone who isn’t off a month at a time, the impact of that would I know cause me much more difficulty and hinder my long term recovery. I wonder if those therapists who choose to take a month long break realise the impact on their clients if they did maybe they’d think again.

Copyright DID Disptaches 2015

Care Plan Meeting – treat me as an equal

In recent days I have begun planning for my CPA early next week and I started to think about the things I need to cover in the meeting. After all this meeting will involve my new care coordinator from the new team my care is transferring to, I haven’t met them yet. It will also involve my existing social worker and my psychologist as well as my daughter, who goes to represent the family and support me.
I know that in the past my interactions with health care professionals haven’t always set off on the right footing, I usually find it hard to trust new people. I certainly have difficulty when professionals treat me like some second class citizen and not the equal that I am. My last experience of the new team dates back some 8years; it wasn’t so great and so I do have some reservations.

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I so want to explain to these people that I am not like many of the people they will have worked with, I have a condition they may never have heard of for starters. I am at times able and capable to do most things and then there are times when I things are too overwhelming and hard, times when I need support and help and times when I need them to step back and let me get on with it. Of course those times fluctuate from one day to another, in fact from one hour to another, depending upon which part of me is up front and driving this body we share.
I want them to know how I find each day, what its really like to be me and yet I’m not sure how I tell them that. The fact is I’m not sure my current team get how complicated and complex life can be for me. I’m certain they don’t understand the juggling I have to go through each day just to stay on an even keel, so how can I really expect my new team too. Yet I’m desperate that they do get me and they get the real me, why, well if they misconstrue me then they will judge me wrongly. They will like many before label me, stigmatise me and make assumptions about me which aren’t true and yes that does bothers me.

 

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I know I need to say things at the meeting about how I’m doing, what’s going on in my life right now and yes I can tell them about therapy and what’s happening. Yet I feel drawn to tell them about the things I’m really struggling with, because I need them to know. Yes I have made huge progress in the past 18 months and I’m really glad that I have, but there is still so much I need to do. For starters I want to be able to understand why I’m crying when I cry and yet there are many times I don’t. I want to be able to stop worrying about being judged but it feels like a mission impossible currently for me.
I want so much to be able to sleep in Bertie bedroom, that’s the name I’ve given the room in order to make it feel less scary, yet right now I’m able to just manage sitting in there for short bursts of time and then I need to leave. I visit the room a couple of times a day to get dressed and undressed but that’s all really, I can’t face sleeping in there and I can’t say when I will. It is as I’m often reminded a work in progress and it’s been months of hard work and effort just to get this far, that’s the joy of fearing a room because of linked memories. My bedroom of course is safe; I know that, but bedrooms and beds weren’t always so safe and that’s the issue. I have to overcome a fear that is ingrained in me from when I was young and sadly it still affects my life.
I want to be able to sleep in a real bed and not face struggles doing that, and yet currently I can’t. In fact I’ve slept on a sofa for 9 months now and that’s not so easy to admit to a random stranger; who I want so desperate to see me as an equal. In fact admitting or discussing most of this to someone who can impact my life in either a positive or negative way isn’t easy at all. So my dilemma is do I tell them at the CPA what’s concerning me or do I sit and pretend everything is perfect just because I have a new team.
How do I really trust these professionals who have the power after all to detain me against my will, give me treatment I don’t want and who can forcible medicate me or lock me in institutions all under the guise of healthcare. The power imbalance that exists between me and the professionals is a bit like having a pink elephant in a room, we all know it’s there but no one talks about it.

 

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That power imbalance though is concerning to me, I don’t like feeling out of control and the fact the new care coordinator and her team can take control away from me is frightening. So as I plan ahead for the meeting that in truth can go one way or another, that could be either a huge success or a terrible failure I need to find ways to stay focused. I need to remember these people are not the enemy, they are professionals whose task is to help me recover and deal with my mental health. In truth they are as at much risk of being sectioned as I am, that power hangs over everyone of us no matter who we are, Doctors, nurses, service users we are all able to be sectioned if we are deemed unwell enough.
This meeting maybe a scary prospect but I realise it also allows me a chance to educate people about Dissociative Identity Disorder and about me. It offers a chance to show them that actually I am working hard, it offers a chance to demonstrate my desire to recover and live an effective life with DID. I know parts of me are frightened by the upcoming meeting, trust is a big issue for us and so getting to know new people is hard. But my job now is to stay calm, reassure my alters and focus on showing these people who I really am and how I expect to be treated as an equal partner in my care.

Copyright DID Dispatches 2015