Coping with Trauma-Related Dissociation

My last therapist recommended this book “Coping with Trauma-Related Dissociation” it’s a pretty hefty textbook aimed at therapists and patients alike. Each chapter goes through a different aspect of dissociation and how it affects daily life etc and there are homework exercises for patients to work through as a kind of do-it-yourself therapy. So here I am, DIYing my way through this textbook to learn about my condition and how to control it/improve it/cope with it. Naturally I’m stuck on chapter one, the problem isn’t understanding the theory, I’m a generally academically minded person and the theory and mechanics of the condition I understand quite well – perhaps too well considering I live with it. The problem is the practical exercise.

This week  – Learning To Be Present.

This is a basic exercise that most patients will have been taught by their counsellors and therapists at some point – you basically notice things around the room and pay attention to them using all 5 senses (breathing instead of taste!). I always sucked at it mostly because the more I try to focus on something the further away it seemed, so I never really kept it up on a regular basis. Now I’m actively trying to stop myself dissociating from my emotions by using the exercise to Stay Present.

Now I can safely say that this has been an eye-opening experience for me because I never realised how often I dissociate from things. Every little emotional wave and I begin to zone out, usually only slightly but enough to stop the emotion in its tracks. Being aware of the emotion, whatever it is, and staying with it, acknowledging it, figuring out where it comes from and why it’s there, is it past or present and what do I need to do with it if anything? It is HARD! I never knew how automatic my responses where before, how much I shutdown. It’s like stopping yourself from scratching your nose but instead waiting to see what will happen to the itch, will it spread? Will it fade? Will it hurt? Will it make you sneeze? How long can you resist scratching?

It has made me wonder though, how often to non-dissociatives “stay present”? Do people without this condition actually experience every little emotional wave that hits them? It was my understanding that everyone dissociates to some extent, everyone regulates their emotions according what is convenient. Feeling upset but busy at work? Push it aside and deal with it later! That is dissociating, purposefully and temporarily in order to concentrate on what’s needed right there and then. My problem is that I don’t dissociate purposefully or temporarily, it’s automatic and for as long as possible until the dam breaks – which could be years. This exercise isn’t about the big stuff, the past trauma or even present trauma, it’s about the small stuff. Learning to be present when there isn’t anything happening other than the usual everyday emotions that everybody experiences. It’s just odd to think that those are the bits that most “healthy” people would dissociate from, and then they pay more attention to the bigger stuff. Does that mean then that what I’m doing here is trying to break down my entire dissociative coping strategy by learning to be present even more than most healthy people are, so that I can then start using dissociation in a healthy and purposeful way? Does that even make sense? I’m not trying to not dissociate ever again, I’m trying to gain control of it and use it in a healthy way, the way most people do according to their routine.

I intend to work my way through this book and I’ll write a post for each chapters exercise to discuss what I learned, what’s weird, what’s easy etc. And maybe some progress will be gained. We shall see.

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Recognition

Let me tell a story of a girl I didn’t know,

People hurt her, pushed her down,

Told her where to go.

Despite all that they did to her,

She never let them win.

No matter how they beat her down,

She never let them in.

She fought to keep her freedom,

She beat back with her mind,

Her body may have been small and weak,

But her strength was all inside.

They never got the best of her,

And after they moved on,

She put herself together,

And built a life hard-won.

Education and children,

Skills and friendships and more!

She used that strength inside her,

To overcome the pain from before.

The mountains that she climbed,

Grew bigger all the time.

One day I will know her,

And accept her mountains as mine.

Music Therapy

I’ve been thinking about the different ways people express emotions; talking, crying, writing, painting, but the one that stands out to me most of all is music. Music seems to be the ultimate emotional expression, it can reach anyone in any language and tell us things that words alone could not express.

In the ward there was a lot of activities and therapies organised to help us to come to terms with our emotions, express ourselves, relax and focus, think positively etc. But there was no music. Then one day the staff were persuaded to get out a karaoke machine, and one afternoon the mood of the entire ward was changed. Everyone got involved. Patients who until then I had only seen sat staring at the floor got up to sing, patients who only left their rooms at meal times came to watch and listen, everybody laughed and smiled, those with severe lack of confidence were cheered when they got up to sing. It was magical.

As a dissociative I struggle with my emotions on a daily basis. I struggle to name them, connect with them, communicate them, even to claim them as mine. As a teenager I learned that I could use music to speak for me. The right song could say what I could not and let someone know how I felt. Happy, angry, sad, lonely, frightened, there was a song for every emotion. Some songs spoke very personally to my situation and enabled me to vent my feelings in a safer way than I was accustomed to. “Long Way To Happy” by Pink said things that I could never say (though be aware it is quite a triggering song), and I still prefer to play that song than attempt to say words that consistently fail me.

Music allows me to cry when I’m upset, shout when I’m angry (long live heavy metal!) express my fears. As someone who usually detaches from her emotions music has been a life line to me. A safe way to confront otherwise overwhelming emotions and put otherwise elusive words to thoughts.

My alters can also use music to express themselves and to create a safe environment in which to heal. Isn’t that the goal for all of us? To heal from whatever wounds we suffer from?

So why isn’t music a bigger part of mental health treatments?  Music therapy is appropriate for every mental health condition, it builds confidence, allows escape, distraction, expression, everyone benefits from music.

 

Here we go again…

The higher you’ve climbed, the further and harder you’ll fall. So why climb at all? There is an element of safety at the bottom and these mountains look so high!

Change the perspective; the lower you started, the greater your victory when you climb high.

Here I am now – at the bottom of my mountain. I’ve fallen so low I couldn’t see the way out, couldn’t even see where to start climbing, never mind finding the strength and will to begin. But when the task or challenge ahead looks overwhelming and impossible, the best thing is to claim smaller victories.

  1. wanting to try
  2. Finding/accepting a guide (or expert climber if you will)
  3. putting one foot on that mountain

That’s what I’m doing here; the hospital staff are my guides and I’m following them to my mountain trail. Then I simply need to start climbing.

I haven’t written anything on here in so long because I got caught up with life in general. I tried to do everything but nothing was enough – I wasn’t enough. I went back to university, had my 4th baby, started a new course of therapy – everything seemed so positive! Wasn’t that the point? Moving forward? Living life? They tell me I essentially did too much and burnt out, and that’s why I’m in here now. I passed my breaking point.

So how much is too much? Where is the balance between tackling the past, living in the present and planning for the future? That question seems to be the Everest in my mountain range.

To try to answer, I’m restarting this blog, and one step at a time I will try to climb this mountain.

Small victories.

 

A complaint letter against my local CMHT and a particular psychologist.

(names and locations have been removed)

To Whom it may concern,
My husband phoned today to follow-up a complaint we submitted a few weeks ago and he asked me to re-submit via email at your request.
Our complaint is against C**** H**** CMHT and also Dr ************ who is personally responsible for blocking my access to secondary care. Dr ********* assessed me some months ago after I tried twice to get help via GP referrals. The first referral resulted in my being sent for CBT, however the councellor was unqualified to treat my condition and decided to discharge me with some phone numbers for self-referral and charity run crisis services. My GP, put in a second referral to C**** H**** specifically recommending secondary care, which was soon followed by an assessment.
****** **********’s attitude towards me in this assessment was annoyed, she said she was confused why I was there as I had received psychotherapy for a number of years and if that didn’t work there was little point in doing more. She made the point of outlining her expertise in dissociative identity disorder and explained her view that too much therapy would be more harm than good , that I would become dependant on the system and that my alters needed to be suppressed and prevented from re-traumatising me. Her choice of expression was condescending and insulting, and quite frankly she missed the point entirely. I agree with her that to discuss one traumatic event every week for 5 years is going to have limited, if not negative, results. I also understand the risks of re-traumatising through therapy. My condition is routed in complex trauma, a lot of which I don’t fully remember as it was compartmentalised through the development of alters and dissociative amnesia. An expert in DID should understand the nature of the condition and how it differs from PTSD. I spent 3-4 years with Dr ***** ******* piecing my memory back to together and beginning to integrate with my alters, but this process was interrupted when we were forced to end sessions in 2015. Since then I tried to continue with the help of my husband, but reached a point last year where things were getting out of control again; flashbacks, nightmares and hallucinations all became increasingly intrusive. Regardless, ***** insisted secondary care would not be helpful and CBT was all she could offer. I attended two sessions of CBT at P********* Clinic, after these the councellor once again said she could not help me. I already know and do all of the routine management and mood stabilising techniques she was trying to teach me, she had nothing new to offer me and she saw that my problems were deeply routed and complex, depression and anxiety being the least of my concerns. After trying to once again get me into secondary care however, I received a phone call explaining that ***** ******** had refused me again, saying “the CBT is there but if that is not wanted there is nothing else we can offer”. In other words, its 6-10 weeks of CBT or nothing even though the primary care councellors were telling her they are not qualified to meet my needs.
I reached crisis point. I went missing for 7 hours, I have no memory of what happened but I was found very disoriented and I had self harmed. The police were called, my husband located and I was taken to A&E were my wounds (thankfully superficial) were dressed and I was referred to the RAID team. I had an appointment with the psychiatrist and psychologist and am currently awaiting their recommendations. They decided it best to contact the C**** H**** to get the other side of the story before making more contrasting recommendations, which I understand and respect.
At the moment I have no professional support. My hallucinations are fluctuating and I am struggling to cope despite my structured routine and supportive family. My husband and I are angry that we were left to reach crisis on the basis of one woman and her statistical approach to needs assessment. I have no doubt that her reasons are driven by waiting list statistics and cost cuts to secondary services, I understand the injustice of this and that she is not personally responsible for government failings. However this was not an apologetic earnest desire to help, hindered by lack of resources, this was a dismissive callous disregard for personal needs and a refusal to accept the complexity of the situation and this lead to situation out of control. Therefore we want to put forward a formal complaint against the CMHT at C*** H**** and ***** **********.
Kind Regards

a poem of intergration

Intergration

 

Head throbbing

Eyes burning

Stomach clenching

Hands Shaking

Chest heaving

Ears ringing

Thoughts spinning

Feelings racing

Mind split

Intergrating

Pictures Flashing

Voices cry

Screaming pleading

Asking why

Never stopping

Cannot rest

Finding Strength

To pass this test

Pain pulses underneath

Scratching nails

and biting teeth

Time racing

Time Stopped

How much gained?

How much lost?

A story of our health system

I have a story for you, let’s see how people react.

It’s the story of a woman in her 20’s who was suffering from severe recurring stomach pains. She put up with it the best she could for many weeks but ultimately had to admit there was something wrong beyond the usual indigestion or food poisoning. She phoned her GP to make an appointment, but before she could be granted said appointment she first had to go through a rigorous phone assessment to establish whether her stomach complaint was bad enough to need medical attention, or whether she simply needed to relax more. This assessment went on for over 20 minutes and included questions such as how long has it been hurting? on a scale of one to ten how bad is it? have you tried any over-the-counter remedies? is there any family history of stomach problems? have you kept a food diary? and so on. Finally, and by this point she felt she was required to prove her illness without even knowing what was wrong, she got an appointment to see her GP. Unfortunately the GP wasn’t any more understanding than the person on the phone. He asked all the same questions again, emphasising home remedies and the need to relax more. The woman filled out several multiple-answer questionnaires and was then faced with the question to end all questions: What do you want out of this appointment? ….stunned, confused and suddenly under immense pressure to answer correctly the woman felt her stomach pains worsen as she desperately thought of an appropriate response. What did she want? She wanted her stomach pains to go away! But surely that was an obvious and silly answer…she wanted a course of medication? or a dietician referral? a scan? Was this doctor actually asking her what treatment she wanted?? Was she supposed to have done research into available methods of stomach treatments? It was very confusing. She left the GP with a promise that her case would be discussed at the next meeting and a referral recommended for further investigation, in the meantime take things easy.

Weeks passed. She heard nothing. She rang the GP office but was simply promised call backs that never came and letters that were never delivered.

A month later she received a letter offering an appointment with a doctor at another facility to discuss options. Gratefully and hopefully she went, praying to every deity in history that something would be done. The pain was unbearable but the hospital made it clear they wouldn’t see her unless she was coughing up blood or in cardiac arrest.

To her dismay, the doctor was in fact a physiotherapist. He asked all the same questions again (don’t these people share notes??) and went on to explain the treatment being offered – a 6 week course of physio to teach and enable her to carry herself in a way that would ease the pain and make it more manageable, enabling her to carry out her daily life without disruption. She asked, rather tentatively, about the possibility of diagnosis or treatment to get rid of the pain? The physiotherapist simply looked at her – “we don’t do that” he said. “We focus more on pain management and enabling you to carry on with your days. We go through a fairly fast paced course here. If what you want is a more investigative approach into causes etc then you need a different department. We can’t refer you there but I’ll give you a few numbers and you can try to refer yourself.”

The next few months were a painful blur. The poor woman was passed from department to department, sometimes being granted an appointment, mostly being assessed and dismissed over the phone. All the while the pain was getting worse and worse, she felt faint, weak and breathless. Some days she couldn’t get out of bed at all. Her appetite left her completely and she began to lose weight rapidly. She also lost her job – her employer couldn’t be tolerant any longer of the amount of sick days she was taking, especially without any doctors explanation, she was clearly faking it. Friends got bored with her being “too ill” to go out and so they stopped calling.

One day an appointment came through to see a gastroenterologist at the hospital. No longer hopeful and expecting to be dismissed yet again, the woman went along and explained for the thousandth time her symptoms and, in a last attempt at getting someone to understand, the consequences of these symptoms in her general life. The consultant listened, asked an occasional question and took a few notes. He then did what no one had done in months of fruitless assessments, he sent her for a scan and a blood test. The blood test was done immediately but the scan she had to wait a while for. When all the results came back however, an ambulance was sent to collect her and rush her in for surgery –  she had been diagnosed with a stomach ulcer, but it had bled and was in danger of spreading infection to her other organs; her life was in danger.

In physical health system this story would not happen – or at least it would be very rare and no doubt be splashed all over the newspapers. You would get a GP appointment that day, s/he would immediately send you for relevant tests and refer you to the relevant specialist. You would not be required to prove your pain. You would not be required to refer yourself for treatment. You would not be accused of faking it for attention and your friends would be more likely to have patience and sympathy. But this isn’t a physical health story, it’s a mental health story. Replace the stomach pain with depression, or anxiety, or hearing voices or losing time and this story becomes very, very real on daily basis. We have to fight and beg for our treatment. We have to jump through hoops and prove our need. And what we are more often than not offered is a pittance, a token treatment. 6 weeks of irrelevant counselling which focusses on management of symptoms but doesn’t begin to look at root causes. In the case of DID you will be profoundly lucky to meet a counsellor, doctor or CPN who have heard of, let alone trained in, dissociative disorders.

The last few weeks have been difficult. A relapse, an episode, call it what you will; either way my inner strength has certainly been tested. So has my patience with our mental health services. I cannot understand how people, like me, can be left waiting so long, only to be offered irrelevant referrals to see professional with very limited training – or at least training in a field far removed from my condition and needs.

If physical health issues were treated with the same disregard as mental health issues there would be public uproar. Suicide is the leading cause of death in males aged 24-39 and mental health is considered a minor problem for someone to have and 6weeks of CBT is the best anyone can expect. If you need more than that you have to literally fight the system for it. You have to complain, pester, repeatedly present yourself as a desperate case, demean and humiliate yourself by begging for professional intervention. For someone with mental health problems, most of which include some level of self esteem and confidence issues and feelings of helpless/hopelessness, this system is bulletproof screen and unless you are fortunate enough to have family and friends who can fight for or at least with you, it unlikely you will break through.

All we need is to be treated with the same regard and consideration as we are with physical health. Yes the waiting lists are too long and the budget too small, the staff too few and the need too high. But we’re not asking for miracles, just understanding and respect.