Looking back at 2013 and my hopes and aspirations for Mental Health Services in 2014

As 2013 draws to an end I have been thinking about what my hopes and aspirations are  for 2014, not just for myself but for all those who suffer with mental health issues. You see looking back on 2013 my mind immediately thinks of the TV programs which have not always shown mental health in a good or balanced light. Then of course there have been the stigmatising, PR and marketing disasters from a number of stores including Asda, Tesco and Amazon to name just a few, who thought it was perfectly acceptable to sell Halloween costumes with titles such as ‘mental patient’ and ‘psycho ward’. We have faced the Asylum maze from Thorpe Park which may seem like fun to some, but is actually to many people disgraceful  and stigmatising; though the management there seemed somewhat slow at realising this.

Then of course there were the sensationalist headlines from a number of tabloid papers throughout the year, which once again portrayed mental health in a negative light. It seems that stigma continues to abound and be ever present in our society and despite every ones best efforts to turn this tide, mental health continues in the main to be portrayed negatively.

I also think of the disparity that exists in our society, that means those with physical health needs seem to get a better health service than those of us with a mental health need.  In the past year I have read so many cases of people still waiting ridiculous amounts of time for talking treatments, some are sadly entering 2014 still waiting. This is surely wrong and yet nothing seems to change, beds are still being cut and services limited across the country, how is this moving forwards? We have seen more and more incidents of the police having to do the job of our healthcare professionals when people are in a crisis, can this situation keep going on?

Now let me be clear this isn’t an attack on the hard working healthcare professionals who do work in intolerable situations, I cannot imagine the emotions one goes through when you have to resort to Twitter to try and  find a bed for a CAMHS patient, because no beds exist. Nor can I imagine how stressful it is when you know that the only way to get a patient admitted to hospital is to section them; even if they are willing to be admitted, because you know that without doing that they won’t get a bed.

I really feel that 2013 has come so close to seeing the breaking point of mental health services and that in 2014 something will have to change, it has to. But how we get change is another matter, for all the verbal and written protesting from various sectors, the reality is that the only people who can bring about change is our government. Its they who can invest the money needed, they who can invest time and effort into opening constructive dialogue that effectively brings about change. If disparity is going to end in our healthcare system then it needs a huge mind shift never mind resourcing.  Given we have an election in 2015, maybe this coming year is the year we challenge, we ask questions, we lobby people, we seek to get equality for those with mental health issues.

But money alone doesn’t solve everything, attitudes have to change too, and that includes the attitudes of healthcare professionals as well, there is good practice out there it just needs replicating across the Country. If everyone from across the wide spectrum of services working with those of us with mental health difficulties were just willing to change, willing to work at solving this age old adage of problem shifting, currently when someone’s in a crisis ‘ out of hours’ ….the healthcare staff call the police…well why not seek solutions inwards, look at yourselves and how you can help. If there isn’t enough beds raise the issue with management and higher, treat patients with dignity and respect not a commodity to pass from pillar to post. Look at examples of good practice and see if you can replicate it, and every time there are issues that need more than any of us can offer, challenge those in authority to do something about it. I for one will be asking every political party what their manifestos say about ending the disparity between mental health and physical health, I will be asking and challenging them to sort this problem out, Will you?

I have to fight every time I have a review to keep the funding I currently have to provide me with the care and therapy I need, that isn’t cost effective use of management time, my needs haven’t changed and I would tell them if they had. All it does is cause undue stress and anxiety for me and my family, I know that for those who like me need talking treatments the battle sometimes seems to be never ending. Trauma survivors and Dissociative disorders are well down the list of priorities for the NHS in most places, and so many people have to resort to struggling to pay for their own treatment. That’s not only unjust it’s morally wrong, and it means many people are left struggling without help.

I truly hope that in 2014  we see positive headlines, less stigma, that we see an end to disparity, an end to injustice, an end to the lengthy waiting lists for talking treatments and an openness from all professionals working with those of us  in need of mental health care to be open to change, and to stop problem shifting. Finally I hope that in the year ahead those who can bring about positive change actually step up to the mark and do something, not just words or platitudes but action, action that helps people, action that solves issues and brings about real positive change within our mental health system. That good practice is acknowledged, is replicated  and is no longer a postcode lottery for service users based on where you live, but is the right of everyone no matter how rich or poor, no matter what your address. I hope that people with a dissociative disorder are no longer treated with skepticism, but offered real tangible help and understanding, services that are right for them and suited to their specific condition freely available on the NHS and without lengthy waiting lists.

Lets hope my aspirations come to fruition in the year ahead, for I fear for the mental health system as a whole, if in 2014 nothing changes. Lets all hope we can work at making a difference and bring about real positive change.

I wish each and everyone of you a positive  New year, may 2014 bring you all that you are hoping for and may your hopes and aspirations come true.

 new year

Christmas as a Multiple

Christmas can mean many things to different people but to children it is a magical time as they wait excitedly for Santa’s arrival, the same goes for my younger alters who in recent years have begun to enjoy the true magic of Christmas.

So this past week my younger alters have been excited and nervous all at the same time, there are those who wanted Santa to come and visit them, and then I had those who are terrified of the holidays and all the memories that flood back, they dread this time of year, yet secretly wish for a Christmas like everyone else.

Its odd for me as an adult to feel all the mixed emotions that come with this holiday season, parts of me are captivated by the magic of hoping Santa arrives and yet I as an adult am busily planning for the special day. Christmas is one of those rare times when I am able to see all three of my adult  children around the dinner table at once, that brings its own joy and happiness.

So I decided I should write about our Christmas, not just from my view point but through the eyes of my younger alters too who see the whole period in a much different way to me the adult mum of three. I have no idea how this will go but here goes:

Some of the Little Alters : We saw Santa at the village market last week, he wasn’t the real one just one of his helpers cos well the real one would be in the north pole getting ready to deliver lots of gifts. He smiled at us and gave us a chocolate that was good, as normally we get left out cos he sees us as a big person which Carol is but we aren’t. It was exciting and we saved the chocolate till the day as that meant we could look at it and think he was coming. 

We had told Carol and her children what we wanted from Santa, we don’t ask for lots as that wouldn’t be fair, lots of people don’t get anything so we just like to have a few things. Carol said we had to get to sleep the night he came, it wasn’t easy but we did, as we didn’t want him to not call. In the morning our stocking was there by her bed and that was great, we had chocolate and boring socks and small things for everyone. We had to share the stocking so some things weren’t for us but well its good to get anything. We watched cartoons Christmas ones are the best and it was fun, we like cartoons at any time. When Carol’s children came we got to open more presents, some crayons and colouring sheets, more sweeties, more socks, and then we got our main thing we had asked for a small cuddly snow dog, like in the cartoon and well we got him he is so cute and so good. We had to take care of him cos we had a real doggy visiting who might eat him…eek!  So we put him on our bed next to Ted, she is our best toy ever and she looks after him. Christmas is fun, but then its good cos now we can enjoy it and before we couldn’t, Carol’s children have taught us that Christmas is nice and not a bad time which is great, a bit odd but great too.

 

Christmas is magical, Santa comes and if your good you get presents and you can ask for things just not too many, its not all about that though its about the birth of a baby and Carol let us watch a cartoon film about the first Christmas too so we remember the real reason for Christmas. One of Carol’s friends even got us a gift its a story book so they even get that we are here and that’s good. not being ignored is nice, we are here just hard to get seen by people who don’t know us, but we are a part of Carol. When we were little Christmas wasn’t fun and now it is that’s good and we are lucky we now have good Christmas.

 

A Different alters views: I hate Christmas its scary and bad, I get frightened as it gets near and my tummy churns inside worrying about it. I hope it passes without trouble, yet I know I will remember the past. I woke on Christmas Eve and remembered, I won’t explain what, just that its not good, I felt frightened and scared, its not easy because everyone else is excited and I am not, I can’t help it I just remember too much. I want so much to be like them, to feel excitement and feel good but inside I feel bad and I know I don’t get presents well not the ones you’d want, I’d be scared if I got presents, just in case. Carol tries to tell me to not worry and she cries too for she gets why I feel frightened. Bad things don’t happen anymore and that is good but I think I just can’t forget and until I can I won’t enjoy it like the others do, maybe one day I will.

 

Christmas holds so many memories for me, and my alters that its a cacophony of emotions and I just have to weave my way through them. It isn’t such an easy time for some of me and so I try very hard to make the day better each year than the last in the hope that for all of me it will become a period of joy and happiness for all the right reasons.

This year we did survive most of Christmas day, yes we had tears and yes we did hibernate for a few hours in the afternoon, but we managed to survive more hours this year than last. We did end the day with a smile on our face and with a feeling of contentment inside. For me like most mums the day was a mix of cooking, eating, socialising and the regular routine of watching the Queens speech and evening TV.

I think like most I ate far more than I should and we probably have some presents which for an adult seem unusual, but for a multiple seem just fine, the Peppa pig chocolates are great, the colouring sheets and crayons are fantastic, as is the snow dog and the book bought us by dear  friends. We also had the great gifts that were bought for me the adult, my favourite perfume, a recently released CD, and a book I desperately wanted, alongside many more that were received with real gratitude and heartfelt thanks.

But the best thing was spending time with the family who accept me just as I am, a multiple, a person who through no fault of my own just happens to have Dissociative Identity Disorder. Acceptance was the best gift this year, alongside true love and affection from those who matter the most, my families cards are not written just to me, but to me and co. and well that means so much for I know it is not easy for them to comprehend this condition, a condition that in reality probably saved my life as a child.

Christmas this year was a success, we coped and we survived, even those parts of me that find it terrifying. We are now enjoying the holiday season instead of dreading it and for that I am so grateful.

If you have DID or any dissociative disorder, I hope like me you have had a good holiday season but most of all I hope you have had one were you have felt accepted, just as you are. Dissociative disorders are nothing to be ashamed of, they come out of children utilising dissociation to survive the unimaginable, they are a sane reaction to an insane set of circumstances. I have no issue in saying I am Carol, I am a multiple, I have D.I.D… So What!   its who I am and I am proud to be a survivor, I hope you are too.

If you have read this blog and don’t understand D.I.D, please look at our resources section to find out more.

Copyright: DIDdispatches 2013

Christmas in Hospital

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During my time as an inpatient I spent 3 Christmases in hospital, so this year I will be glad to be at home with my family, though I will still spend a part of my Christmas day calling someone who I know will be in hospital over the holiday period.

Each of the 3 Christmases were different, my first was in a local hospital where I was able to still see my children on Christmas day, I can remember the staff that day included the ward manager who was willing to work the holidays alongside her colleagues. All the staff on duty were happy and friendly, every one of the small group of patients who hadn’t been discharged were given a small gift from the hospital. I can recall thinking that at least it showed they cared  and the whole ward atmosphere was jovial and quite relaxed, the nurses didn’t hibernate in the office as was usual practice but instead sat in the lounge with the patients. The ward was decorated for Christmas and there were  tins of sweets for people to share, It wasn’t an easy time but they did the best they could to make it bearable and it was reflected by the calmness of the ward that day.

On Boxing day it snowed quite heavily and this meant my visitors couldn’t get to the hospital as was planned for a few days, this could have been a really difficult time for us but the staff reacted well. Whilst my visitors couldn’t get to me, I was still able to go for a walk with nursing staff , enjoying the snow and the cold crisp winter air. Just being able to off load how upset I was at not seeing them, how much  I was hurting inside, made it somehow more bearable especially as I was able to do this not in the confines of a ward but in the fresh air as we strolled in the grounds.  That Christmas wasn’t the easiest but it was far from the hardest.

My second Christmas a  few years later was very different, it was the hardest by far, the staff didn’t want to be at work, It didn’t really feel like Christmas and the ward wasn’t decorated or anything. The only way you knew it was Christmas day was the simple fact that some of the other patients who had become accustomed to Christmas away from home, were excited and loud as they shared gifts with one another. I had  arrived less than 2 weeks earlier, so I was still getting used to the new environment and the restrictions of a secure unit. I was still on high level observations and really felt  like I didn’t want to celebrate, what was there to celebrate my family were hundreds of miles away. We only managed a brief chat on the phone with them and even then we had no privacy the phone was located in  a loud communal room. I just wanted the earth to swallow me whole, to sleep and not wake up, anything for the nightmare to end. No one had outdoor access that day, not even in the courtyard which basically resembled a patch of triangular-shaped concrete surrounded on all three sides by the 2 storey high walls.  The food was basic and plain, Christmas lunch without any of the trimmings and tea well It was just cold sandwiches served early by the kitchen staff; who left to go home, and left to go hard on the ward until tea time. This wasn’t even bearable and I actually believe degrading treatment of people with a mental illness, I think many prisoners probably had a better Christmas that year than the women including me, in that privately run medium secure unit.

My third was different again, this time I was in a locked  rehabilitation unit  run more like a medium secure one with sanctions, and control systems to  ensure patients complied and had no voice. It was probably like that because the staffing, management and organisation responsible were the same people as at the secure unit I had been at previously. I spent the run up to Christmas in the unit, we had decorations and even cake, though none of the patients were allowed to buy other patients a gift. perhaps not such a bad idea from a management point of view. But many of these women didn’t have a family sending in gifts and so this restriction meant many had little if anything to open on the day.

It was still business as usual right up until the last-minute. So all the regimes that operated on a day-to-day basis were still in place including the daily meetings and coercion tactics that were used as a matter of cause.  I had just been made informal, but I couldn’t leave without their consent and they had to let me out of the airlock door just to go for a walk. It was as if I was sectioned except the legal name had changed, it was coercion at its very worst and yes I hated it. But I had to comply if I wanted to get home for Christmas, you see I had managed to persuade the unit with lots of pressure from home to be granted time out of the unit.

I had to travel by 2 trains, 2 taxis and finally a 30 minute journey by car just to get home. It took me hours and yet it was worth every minute because I was able to visit my family for Christmas day, I can’t recall exactly how long I was given leave for just it wasn’t long enough and I seemed no sooner to have got home and I was leaving again to go back. But I did eat Christmas lunch with my family, and I was able to open presents with them around me simple things that most of us take for granted.

I can recall going back down south to the unit, feeling sick inside so desperate not to go but so aware that despite being ‘informal’ I had no choice, if I hadn’t returned they would have detained me and I would have lost far more. My departure was as hard on my family as it was on me, but I recall once back the unit was in chaos, staff were grumpy at working  and there wasn’t any festive spirit there at all. I asked others what their Christmas day had been like and the cook had made an effort and they had a good meal, but there wasn’t much festive fun. I felt I couldn’t answer when they asked what home had been like, for I didn’t want to feel like I was gloating, I wasn’t but I knew that if I had been in their shoes my tales of home would have felt like that.

Christmases since this time have all been at home thankfully, and I cherish each one for the simple fact of being with the people I love and who love me. Every year since I call someone I met from those dark days who is still stuck in the system of psychiatric care and has spent nearly 12 Christmases in hospital. I always send gifts in advance and try to visit either just before or after the holiday period, but on the day itself I call just to let them know someone is thinking of them at Christmas time.

That is why tomorrow I will be giving a few hours of my time over to support a scheme run by my church, they distribute hundreds of gifts to people in hospital over Christmas, distributing them around the wards on Christmas Eve. Now this hospital doesn’t house mental health patients, but serves those in need of physical care at this time.   The idea that a simple gift from a stranger can make such a difference may seem strange in our very commercialised and materialistic world, but having been in hospital over the holiday period I understand why these gifts mean so much.

It isn’t about the contents of the gift itself it is the simple fact that someone is showing they care, these random acts of kindness speak volumes to people in need. I can appreciate the impact such a gift can have on a patient and that is why I will be distributing gifts this Christmas eve alongside many other volunteers. The  hope is to bring some joy into peoples  lives and to let them know they are not alone, but that others care.

Christmas is all about joy really, it always has been right from the very first Christmas and so its apt to think my actions may bring joy to someone today.

If you know someone in hospital this Christmas why not give them a call or a visit, it might not seem like a lot to you, but it will mean so much more to them.

If you find yourself in hospital for whatever reason this Christmas I truly hope that you find some true joy at this time,  and that someone somewhere shows you a random act of kindness however small, to show you that you are not alone and that others care.  It isn’t easy being in hospital at any time, but its even harder at Christmas, I will be thinking of everyone  who is in hospital at this time.

Happy holidays and a very Merry Christmas to everyone, may you all know the  Joy of that first Christmas at this time.

Carol

The challenges of the Holidays with Alters

With Christmas fast approaching, like most people I am busy preparing for the holidays, but unlike most people I have to also take account of the rest of me, my alters.

For those who don’t understand alters, let me explain very briefly, as a child to cope with the extreme trauma I was going through I dissociated more frequently than the average person, all this dissociating led to the formation of my alters. Alters can either carry memories or have a specific function or role, each alter has a distinct identity, its own characteristics and mannerisms, likes and dislikes. I may not have awareness of the alters, so others may see me switching and I might be oblivious to this. The alters may assume control at various times, usually brought about by a trigger of some kind or to cope with a specific task or situation.

So my alters are an important part of who I am, and I don’t have full co-consciousness with them either, which in itself isn’t so great for planning how we respond to such an event as Christmas.

Some of my alters are children and they are either over excited at the thought of Christmas or terrified because of a specific memory that they hold, meanwhile the adult parts of me are either stressed and over whelmed or are busy planning and preparing everything. It can be chaotic at the best of times, but at this time of year its even more so.

I have already had to start thinking ahead, putting in place coping strategies to deal with any and every eventuality. I know stress makes me switch more frequently and I also know I perform less well if I am over-whelmed by things. So in the last few weeks I have been busy trying to get ready, though I will still be like many people rushing around with a list of things to do right up until the last minute.

The difference is that as the day approaches I will face that ever increasing risk of a younger alter popping out to watch cartoons, stare at the tree or just think about Santa. So even the best laid plans tend to go array at these times. My poor house currently resembles a fairyland as more and more lights had to be added to the display, more and more baubles to the tree just so everyone felt comfortable and happy.Over the next few days I will be aware that I have lost more time, and my plans will constantly have to change and be re-evaluated to accommodate whoever decides to pop out during this period.

Its not easy, but it can and does have some fun points too. I am now more excited about Christmas than any of my three grown up children, and I can only assume that without DID most adults will be just like them. The magic of Christmas does fade when you loose your childhood innocence, but I haven’t lost mine, well not all of me anyway so for some alters the magic is just as real now as ever and that’s quite good.

Sadly however there are negatives, being a multiple isn’t so simple in a society where everyone assumes singularity as the norm. I can’t share my excitement outside of my immediate family and friends it too difficult to explain.  Nor can I ever repay my family for the times each year all through their childhood that I their mum would disappear to bed and sleep. Christmas was no exception to this and so everyone lost out, me included.

It is only in the last few years that I have come to learn and understand how much I need to self care around this time. I already know from previous years that it takes me a huge amount of effort to even stay awake for the whole of Christmas day. In fact I have not been able to manage that for many years. I did get half a day last year before I became too tired and overwhelmed that I had to retreat to bed.

This year I will be utilising all the skills and knowledge I have acquired to cope more productively; as a multiple, with Christmas. I have just bought my younger alters a gift and I can only hope Santa delivers me something from them. I will take the day at a steady pace with no set expectations placed upon us, though I am secretly hoping to achieve at least 2 thirds of the day awake. I have no desire to be any one alter specifically, my family will cope with whoever is around.

I am having a session with my Therapist just before Christmas, so am hoping that will help too. Plus I have been busy preparing all of me for the holidays especially those who I know find it hard and triggering. So lots of self talk and reassurance really.

Yet despite the challenges I am looking forward to the holidays, I know it will be a magical time especially for the younger parts of me. I also know that I will be at home surrounded by my family. Even if I don’t make the whole day, this year will be better than the last, a clear sign we are moving forwards. I am aware that despite the challenges of the holidays as a multiple we have much to be grateful for, in reality we are truly blessed.

I hope everyone has a great time this Christmas and even if things seem tough right now, don’t give up it will in time get better. Multiples can and do have fun even at the holidays, some may say we have the opportunity to have more fun than most people. For if we have younger alters we can enjoy the magic of Christmas through a childs eyes.

Holding out an olive branch to my Community mental health team

Like many people with a mental health issue I am meant to have access to and services & support from a local community mental health team, (CMHT).

In my own case I have only received a visit from my care co-ordinator twice since September, despite having real needs and real issues, the support provided to me has been sparse to say the least.

Now you might think perhaps things weren’t too bad and so they had prioritised others needs ahead of my own, but that wasn’t the case, we have faced a huge crisis period including a key trigger date which sent us into a spiral, we were utilising bad coping strategies including self harming; something we hadn’t had to resort to for some time previously and in the past few weeks we have just started working with a new therapist, yet throughout all of this our CPN and the CMHT have been absent. 

Is this unusual? I don’t think so, sadly it appears that this is the state of care in the community for many people. In my opinion the government and the management of the NHS should hang their heads in shame, they are allowing service users, vulnerable people to be failed.

Since my discharge from hospital 4 years ago I have had so many CPN’s, 9 in total, this equates to 1 every 6 months…now to be fair our current CPN has stayed in post more than a year. .. but 9 in 4 years isn’t giving consistency of care.

Unsurprisingly relationships with my CMHT are to be blunt at an all time low. We have had to endure months of waiting and protracted dialogue in order to finally start getting the therapy everyone agrees we require. Much of this as a result of the way Clinical Commissioning Group’s organise their funding panels; which need to make decisions about client services. In my own case therapy has had to be sourced externally as my own local NHS trust didn’t have anyone suitable to undertake the work.

We have faced hi-jacked meetings where we were invited to attend the CMHT offices to discuss a plan for potential therapy starting, only to find on arrival they had plans of their own which revolved around me signing away any right to therapy again if this new therapeutic relationship didn’t work out. No matter what the cause, so if my therapist needed to end our contract early They wanted me to sign away any right to ask for a new therapist!

Luckily myself and my nearest relative realised what was going on and managed to seek legal advice before we did anything, and surprisingly once they knew that I would not sign anything they no longer wanted to meet to discuss this issue.

 Now I know that having dissociative identity disorder makes me ‘complex’; their words not mine. But as a survivor of child abuse we need consistency, understanding and someone who we can both trust and build a rapport with. None of these difficulties have helped us in any way, all they have led to is me relying more and more on my family and friends and less and less on the statutory services put in place to assist me.

I recognise that my relationship with the CMHT is flawed, I have real issues with the power imbalances that exist, I am left feeling out of control and that triggers me and frightens me. I can’t help that, it’s just my reality and one which I am trying hard to work through.

You see these individuals belong to the body of professionals who sent us miles from home, detained us, forced medication upon us, stripped us of our dignity and worse. They are the people who would use coercion to get us to go into hospital as a voluntary patient with the words “if you are not willing to come in voluntarily then you leave us no choice but to detain you”. It was in reality a section by all but name, and I knew each time that if I chose to leave then they would just bring me back and detain me anyway. So a 2 week stay would become 6 months and I really had no say in all of this.

Being detained or forced into staying by coercion is not only an unpleasant experience, but it strips you of any feeling of control and for me as a victim the last thing I wanted was to feel out of control, worse still to feel controlled. So sudden transfers, locked doors, forcible treatment is horrendous.

But these professionals are the only source of help I can access and so 2 visits in 4 months isn’t helping me maintain stability or providing care in the community. It leaves me vulnerable and at greater risk. Risk of mismanaging my medication, self-harming  or worse.

Am I the only person that is treated like this, sadly NO many people are left alone and vulnerable to cope in intolerable situations. I know I am fortunate I have a family close by who can offer some support, many don’t have that luxury. CMHT’s appear to have ever decreasing staffing levels and increasing demands placed upon them it’s a further example of the disparity that exists between mental health and physical health care.

So I decided last week I needed to try and rectify my relationship with my CMHT, I emailed my CPN requesting a visit. This week on Monday, I met with my CPN in the hope that we can get back on track and in turn they can provide us with the support we need. I am willing to work at this, but now I wait wondering if they will be able to understand me and my condition, will they offer support and be willing to help. I can’t predict if they like me will be willing to adapt and work at making this a more positive working relationship. One that I hope can be based on equality, fairness and collaboratively working.

But what I do know is that when NHS services work well it has such a huge impact upon the service users, leading in turn to better outcomes and the use of less resources. In other words it’s a win, win for everyone.

I also know that there are examples of good practice out there, there are service users receiving a positive experience and support from their CMHT’s. I just need that to be replicated locally, not just for my benefit but for others too. I need my CPN and my CMHT if I want to maintain good progress and stability in my mental health.

Maybe this Christmas mental health professionals could think about how they work, how they engage service users and review if they are able to improve services. 
I know they are over worked, under resourced and placed in impossible situations, day after day. But perhaps if they could remember we are human beings as well, with feelings and needs ,just like they are it might make a difference.

I know I didn’t ask to have my condition, it’s not easy for me or my family. But neither would I wish this on anyone else, yet mental health issues affect people from all walks of life. With statistics of 1 in 4 people having a mental health issue it so easily could be my CPN or any other mental health professional facing my dilemma this time next Christmas. I do wonder if any of them have ever thought that It could be them standing in my shoes!

My hope personally is that the relationship with my CMHT can get back on track. As much for my sake as theirs, I have been willing to reach out an ‘olive branch’ towards my team. That hasn’t been an easy step, it has taken me a lot of courage, but I knew it was a step I needed to take, and one that I took knowing I had nothing to lose and everything to gain.

My wish this Christmas is that the CMHT are willing to take hold of that ‘branch’ and seize the positive opportunity they have been offered. I guess only time will tell.

 

 

Out of the darkest of times comes hope – the hardest blog to write.

Today has been a significant day, 6 years ago I was driven by my local NHS trust 200 plus miles from home to a privately run secure service. I had been on my first ever section 3 for less than 2 months and was in an open acute ward; no lock on the door and a fair degree of freedom.

The professionals decided I needed trauma therapy and to get that therapy, they needed to separate me from my children and relocate me to the south west coast of the UK. Suddenly for the very first time I felt like a third class citizen, I was deprived of all my clothes bar the ones I was wearing, all my possessions except my teddy were taken away and locked in a room to be searched. I had to eat with a spoon, drink from a plastic cup and worst of all be watched on a 1-1 observation when I used the bathroom, even when I showered. I was on constant observations, both day and night and had NO PRIVACY.  My first night men sat feet from my bed as they expected me to sleep!

To say I was terrified would be an understatement, I remember begging my family for help on the phone but they had been told I would do this, so at first were not quite so sure of how I was being treated. Just like they were told that only a few patients would have committed crimes and be held under ministry of justice sections, when the reality was over 70% of the patients were being held by the ministry of Justice.

I sat petrified as people told me they were in for murder and other offences, I had no criminal history, I used to work for the government, I had served on boards focussed on policing and probation so I had to lie when asked what work I used to do because basically it was the only safe thing to do.

It was 12 days before Christmas and I felt so alone, so unhappy and so desperate, this was an unfamiliar environment. I was locked out of my bedroom for most of the day, in fact from about 8am till gone 10pm. I had to sit in a room crowded with women and staff, the noise levels were frightening and there was a lot of conflict, violence and anger.

I didn’t get to go outside for a few days and the window of my room was screwed shut. My things were not searched for days so I remember being in the same clothes for days, though they did give me access to nightwear and my toothbrush after I kicked up a fuss, but that’s all. I didn’t even have a photo of my children to look at, nor the small keepsakes they had chosen to ensure I could remind myself of them. Things they had given me on my last night in hospital close to home.

To say this was a nightmare would be an understatement, it was worse than a nightmare because I couldn’t wake up from this. This was now my reality!

The professionals thought they were helping me, they convinced me that it was for my best interests to go, but this wasn’t helping me it was absolutely without a doubt re-traumatising me.

I am a victim of childhood trauma and I now know have DID, so being in this alien monster of a place so full of power imbalances was horrendous. I had been stripped of my dignity once more and felt the isolated terrified child I had once been before, and yet now this was being done legally and in the name of treatment.

My children insisted on a pre-Christmas visit given we had all had less than 24 hours notice of the move, it was odd to see them with a person watching our every move, listening to every word. They bought me flowers, I couldn’t keep them because vases were a non starter in this place. They gave me gifts for Christmas, that the following month I had to send home because they weren’t allowed. The sad irony is my daughter checked before they came what they could bring me and yet somehow the rules changed and I wasn’t allowed them after all.

There were locks of every door, swipe cards, an massive wire fence ran around the whole place, it must have been 10ft high. This was my world, day in and day out, and I felt trapped. I felt cheated by my mental health team back home, lied to even conned.

I trusted no one, and nothing, I lived in fear and felt fear, I felt alone and truly felt abandoned.

I clung to my bear hoping to find some small crumb of comfort from the touch of her fur I waited in desperation to get access to the phone, my calls home to speak to my children became my lifeline. Once I got some of things; those I was allowed to keep, I looked every day at the children’s photo remembering the good times before my memories had returned and I fell apart mentally because of my past long ago.

I was already dissociative, I had memories, flashbacks,  nightmares, triggered all the time by anything and everything  and yet now I was in an environment where no one understood and I couldn’t escape the triggers.

I learnt to press on and dig deep for survival, to play the game and look ok. It wasn’t easy and I learnt as I went along. I realised that observations would get reduced in the staff’s time and not mine and I couldn’t challenge things it just didn’t work that way. I knew if they wanted to sanction me they could. The whole place operated by sanctions and there really was no rhyme nor reason to them at all. People who kicked off would get grounds access, people who didn’t would lose it.

There were times when the phone didn’t work for days, times when restrictions on the unit as a whole where harsher due to the level of incidents. It didn’t matter if you were involved everyone paid the price for others indiscretions..

My children visited me often, well as much as they could but each visit required 10 hours of travelling for about 2 hours with me. I cherished those times, always trying to smile and be brave for them. We wrote often to each other and I began studying with the Open University to occupy my time.

My children bought me a devotional bible for Christmas that year and it became my constant source of strength. I never fully realised then, just how much that bible gave me but I can honestly say that it was the best gift my Children could have ever given me, because it gave me HOPE.

Hope in the darkest of times, and in the darkest of places to know that I wasn’t alone, I wasn’t in this on my own, I had an awesome God who loved me and cared for me so much. Together we would get through this ordeal, and we did.

It wasn’t easy and yes it did leave a scar, a scar that I think will take some time to heal. I lost my faith in the NHS, I lost my faith in the healthcare system as a whole.

The nightmare did finally end, but not until 2009; by which time I was institutionalised and damaged even more.

But I also learnt what love is, I realised I wanted life not death, I wanted to be a SURVIVOR. I found the beginnings of my faith, and I learnt a lot about myself.

I was finally diagnosed with DID and then everyone realised I needed to be in the community after all. It wasn’t an easy journey and it’s not one I would wish upon anyone, yet because of that time I graduated last year, and I know I earned every ounce of my degree because most of it was completed in hospital; in the darkest of places and in the hardest of times.

Today as I woke this morning and thought about the feelings I held back in 2007 on that first day in the secure unit, I realised I should blog about my experience. This hasn’t been an easy blog to write, I have shed a few tears in the process but it needed to be written all the same.

If one healthcare professional thinks before they make a decision to do to someone else what was done to me, if they reconsidered their decision, then it will have been worth it.

My advice to healthcare professionals based upon my experience is that unless you know what a place is truly like, then no one should send another human being into the unknown.

I don’t doubt some people need such places, nor that other hospitals run differently and are better than the ones I experienced.

But the people who cared for me back then and made the final decision, they failed me. I was vulnerable, defenceless and highly traumatised already, yet they in my honest opinion neglected their duty of care. It nearly destroyed me and it nearly destroyed my family too, we live with the aftermath its etched on our memories forever.

I hope no one else is failed ever again.

Accepting the diagnosis

I have always thought that I had accepted my diagnosis of dissociative identity disorder, and yet in the last few weeks I have come to realise that there is a real issue of denial going on. I am now having to face up to the harsh reality that I have a lot of work to do in order to accept the diagnosis and who we are.

When I was initially told in 2008 that the health professionals dealing with our care thought we might have some form of dissociative problem, I was really isolated, I had been in hospital unwillingly for some time and was 200 miles from home, it wasn’t just a normal psychiatric facility but a locked unit and It ran by a system of rules and regulations which I found difficult to comprehend and was re-traumatising.

Even though I realised I couldn’t remember things, I had so many gaps in my past, I lost time and people would tell me I had said or done things that I had no recollection of doing; and would of course deny ever saying or doing, I had no idea what dissociation was. Looking back it was a bit of an alien concept and I wasn’t in any position to find out more about it as I had no access to the internet, and limited contact with the outside world. So I had to accept what the therapist and her psychology colleagues were saying as they performed numerous tests upon me and whilst it sort of made sense to me logically we never discussed it at any more detail.I knew I had suffered trauma, all my therapy sessions had been about trauma, and my nights and days were filled with memories and flashbacks.

For various reasons I eventually underwent the SCID-D test, not once but three times, each time by a different healthcare professional. Two of them were experts and one had never performed the SCID-D test before and wow did I feel like her guinea pig, she asked me every question going and her test lasted approximately ten times longer than the experts. Maybe practice makes perfect.

The results all led to each person independently diagnosing me with Dissociative Identity Disorder and for the very first time I actually understood what that meant in terms of different parts, and the terminology used to describe the things we did on a regular basis.

I can recall the first call home to my family to tell my daughter the results, I was somewhat incredulous about it all, as if it was just yet another label and well I hadn’t always been like that, had I?  My poor daughter; received a very brief and angry response when she replied…. “That makes so much sense Mum”,  I know I raised my voice, I ended our conversation quickly and was angry with her for even thinking I had ever been like that before now.

But overtime and with more understanding I honestly felt we had come to accept the diagnosis and who that meant I/we were, yet recently I now recognise that I have never fully accepted the way this diagnosis makes me feel. That’s been a hard lesson to accept, as I really believed that I had taken ownership of my DID and I understood how my mind works, why, and acknowledged I had alters and that they had different traits to me.

Truth can be hard to bear, yet once seized there is no going back, no more denying and no more burying my head in the sand when it suits me.

You may ask what has brought about this sudden revelation in my life, well I have been in therapy for quite some time, and then this year for reasons I don’t wish to disclose at this juncture I had a break in sessions. I eventually changed therapist and now see a very skilled psychologist who works in the field of trauma and dissociation. We have only been working with him for the past month, but in that short time I have come to realise that denial plays a much bigger part in my life than I ever imagined. It hasn’t been a light bulb moment, but it has been a necessary part of my journey and one I am willing to learn from.

Having any mental illness or condition is often difficult to accept, but a dissociative disorder like DID well to acknowledge it means accepting why, why I dissociated in the first place, why I became so fragmented and why I have alters; some of whom carry horrific memories.

The answer to these whys, well I am a victim of childhood trauma and as a child in order to survive the unimaginable this child called Carol dissociated, took herself up above the trauma and the pain and let an alter take those memories and the suffering. I know that dissociation probably saved my life, for without it I have no doubt the little child I was could never have survived what in reality we went through, so to block it off, compartmentalise it, was our saving grace, It allowed us to continue to exist in the reality of normal everyday life.

But for the last 5 years whilst I understood the concepts, the theory and the facts relating to DID, I didn’t want to accept the reality that this was me; not fully anyway. I guess we thought we had, we tried to wear a mask of “we have DID” but the truth is I couldn’t quite take on board my alters memories as my own. I’d doubt them, disbelieve them, dismiss them, deny them, I would try my hardest to correct my grammar from plural terminology of we, to I. I’d talk of my alters but in a way that somehow allowed me to not fully take on board that this was me, that they are part of me, their memories are my memories, they were abused, I was abused.

I know I am not alone, denial is a significant part of dissociation, DID wouldn’t exist without the minds need for denial it acts a bit like a glue holding the dissociation in place. Denial also plays a crucial part in keeping past secrets hidden, both in childhood and in the here and now. For someone to fully acknowledge they have DID, means to accept what happened to them as a child, to accept the harsh reality that they were a victim and possibly people they thought of as caregivers or friends, were in fact abusers. Many people especially those with dissociative identity disorder will understand just how much denial can impact upon life. Its a key issue and its one that; for me at least, is going to take some conquering.

For me this revelation has meant many tears, tears of sadness, hurt and regret too, I felt I had failed my alters by disbelieving them, let them down somehow, though I know that I have nothing to be ashamed for I have no reason to feel guilty, none of this was my fault I was just reacting in a normal way to difficult circumstances. I have also cried because having to accept the past is painful, to fully comprehend that this is my life, was my life.

Today I am starting a new road, acknowledging, believing and trusting my alters, this isn’t a simple easy step forward and I know I will stumble and fall and I will need picking up again, more than once. Yet acknowledging my past, taking ownership of the truth, letting go of false hopes and false aspirations its not easy and it won’t be easy, but it will be worth doing. I know the hard work is only just beginning yet for the first time I really want to grasp this truth and if that takes hard work so be it. No pain – No gain, that’s the saying.

I am no longer denying the reality that I am a we, a multiple, who lives a pluralised existence in a non-pluralised world. A person made up of alters, fragmented parts and a person who endured the most awful past. You see I also know that dissociation is a natural sane reaction to an insane set of circumstances, and there is nothing more insane than childhood trauma.

If like me you are struggling to accept the diagnosis, don’t lose heart you will get there even if it takes a while. Denial is a big issue and it takes some conquering but I have realised that survivors, multiples, we have choices we can either keep on ignoring the truth or seize it and take ownership, by taking ownership we are accepting who we are and slowly we can move forwards. Well here’s hoping.

Copyright: Diddispatches 2013.