Sharing your mind

This is complicated, and a bit delicate. DID used to be called Multiple Personality Disorder so you can guess what the major qualifying symptom is, yes there is more than just me in here. I share my head and body with several others, however I don’t tend to talk about them, not to family or friends or strangers, and the reason is simple; I ask you, if you had room mates and you went talking about them to anyone without their permission, essentially gossiping behind their backs, would it make for a pleasant home environment? Or would it cause a whole lot of tension and bad feeling? Would they trust you? Let’s face it when you share a tight space with someone else you want to make things as easy and smooth for everyone as possible. They prefer I don’t talk about them, so I don’t. They didn’t want any part of my therapy either, though I had to talk about them there as that was part of the process, so I talked to them first, we had a sort of weekly conference call to make sure we all knew and approved of what was going to happen in therapy that week. As they don’t want me talking about them I won’t, however I thought that considering this is a blog about living with a dissociative disorder, and considering that my disorder is DID, it would be strange indeed if I didn’t have at least one post on life with alters. Out of consideration of them I shall keep things general.

What I understand from my former therapist is it’s not just the general public who struggle to grasp the concept of multiple personalities. Personally I don’t know what’s so difficult, your mind created you why can’t it create others? If your brain is capable of compartmentalising different memories and information and so forth, why can’t it compartmentalise personalities too? Which is precisely what it does do. Language is a difficult thing, don’t talk to me about ‘my other parts’, don’t ask me whats its like when I’m being my alter, don’t suggest that they are different sides of me. It isn’t about me, it’s about us. We are different, separate, we were created from the same brain yes, but we are separate. I don’t know what the others think about, what they feel unless they tell me. I don’t know what their memories are either, which of course leads us to the main point. In my previous post endure vs suffer I talked about that nuclear bomb that we boxed off? Well in the case of DID it’s more several boxes rather than just one. These boxes are buried in separate places and hold different things, they are guarded in different ways and all have different levels of radiation leaking from them. Around each of these boxes, an alter was created.

I imagine the head of someone without DID (a ‘single’ to use a common term) is like a large open plan studio flat. Lots of space, only one occupant, a few cupboards and boxes (which may contain unpleasant memories and experiences that the person doesn’t want to face) but mostly very open. In contrast, a person with DID( a ‘plural’) will have more of a boarding house, with rooms for each alter and in each room there are locked cupboards and boxes. Some plurals may have a common room, some rooms may be linked by doors, windows or just phones, whereas some rooms may be completely shut off and their existence only known because of the noise through the walls. It’s crowded, it’s noisy, and it’s very complex.

Everyone’s experience is different but from talking to other people with DID I understand that alters tend to have certain “jobs”, they hold a specific memory or aspect or emotion from a memory, and their entire personality has evolved from that point and for that purpose.

They may be a snapshot in time – forever the child from that memory in that moment unable to grow up and always in pain. That child will have their own feelings and way of understanding what is happening, they might be aware of what’s going on in the real world or they might be unaware of any time passing at all. Many people with child alters tend to find themselves acting the parent, they have to look after that child, they might buy toys for the child, watch kids films, have a special area or room set up with a den where the child can go and be themselves safely.

They might be what you would have been if the bomb hadn’t been boxed off – broken, angry, confused, scared, illogical and maybe borderline insane. Just think, we lived our lives with everything buried, we only had to cope with the leakage – who protected them? Whilst they held those boxes so we could live, who helped them? Some might have issues of abandonment and loss.

In my personal experience there are 2 main types of alters – external and internal. External are the ones who you lose time to, the ones who might want their share of life, the ones who jump out to protect you when you’re threatened and who, whether unintentionally or not, can cause one hell of a lot of trouble with family, friends, employers, teachers, whoever. The bottom line to always remember is they are not you. The alters I share this body with are not me – they have their own mannerisms, tastes, styles, attitudes, some things we have in common some things we don’t. And anyone who thinks it’s just me putting on a show consider this – one of them can drink like a fish whereas I have almost zero alcohol tolerance, and I’ve heard reports of people who have genuine allergies that don’t affect the alters – the brain is a complex thing. External alters can certainly cause a lot of trouble, but they are sometimes the easiest ones to compromise with and help when needed. If it’s a child who’s upset they can come out and have some time in a safe place, and if they choose (which mine never did) they can take active roles in therapy, even have therapy themselves.

Internal alters are another matter entirely, they’re the ones who give you a migraine screaming when they get overwhelmed, the ones who deafen you with shouting and talking when they need attention or want you to get away from a certain place or person and the ones who are hardest to help because what can you offer someone you can’t touch, see or physically interact with? How do you counsel them on issues you yourself are trying to resolve?

The only way to live as a plural is with communication. This can be difficult if alters are angry and hostile towards you, but it has to be done somehow. A head-ups has to be given before going to places that might cause distress, party’s, shopping centres etc. You constantly have to be aware of each others needs and compromise is a skill to be mastered quickly. One of the hardest things I find about being ‘plural’ is the lack of privacy. I go nowhere alone, I do nothing in private, I am eternally watched and often have a running commentary on my day.  One of the scariest prospects of integrating, which is the closest thing to a cure and means merging with all the alters so I am a single like everyone else, is being alone. I mean seriously, what do you people do when you’re alone?! Who do you talk to? Do you talk to yourselves because honestly that sounds crazy! What do you do with all that internal space?! It’s a scary prospect and I can’t understand how on earth I would cope being alone. Contradictory? Yes, but I’m allowed to be.

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Endure vs suffering

Dissociative Disorders are complex,  there are 5 catagorised types of dissociation – amnesia, depersonalisation, derealisation, identity confusion, identity alteration. And there are 5 dissociative disorders; Dissociative Amnesia, Depersonalision Disorder, Dissociative Fugue, Dissociative Identity Disorder (DID) and Dissociative Disorder not otherwise specified (DDNOS). DID is what I personally have and it is considered the most complex as it has all the elements of the other disorders. For more information on each of these I recommend you visit mind.org.uk as they have a pretty good break down of each disorder and available treatments etc.

As with any mental health condition/disorder your life can be turned upside down so often it’s hard to tell which way it was to begin with, friends often back away quickly, family will be reduced to tears, education can be a nightmare and don’t even think about holding down a responsible complicated job. Also, again like most conditions, it’s unlikely that your dissociative disorder is the only thing you have; panic attacks, depression, anxiety, OCD eating disorders, hallucinations, self harm to name just a few, are all commonly associated with dissociation. However there is one thing I’d like to clarify, and it’s something that many people with dissociative disorders may disagree with at first but hear me out.

Dissociative Disorders are for life, therapy can help and we learn to cope and make changes but we will have our disorder for life. Many people have lifelong health conditions and illnesses – schizophrenia, bipolar and personality disorders for example, and phrase usually used will be “they suffer from mental illness”. People with Dissociative Disorders do not suffer, we endure. There is a harsh fact about dissociation and that is we were not born with it, it was triggered. We did not eat unhealthily or excessively drink or do drugs, lifestyle has nothing to do with our condition (although it can have major effects on coping with it). What triggered our disorders was beyond our control; we were hurt. I don’t care to go into any details, others have attempted to describe the nature of trauma which causes these disorders (bearing in mind that it will be a different story for each person, none of our experiences are the same), so it’s not necessary for me to do the same. What I do want to discuss what the dissociation DOES, and then you can decide if I’m right when I say “suffer” is the wrong word.

Imagine a nuclear bomb exploding, its rare for anything to survive such a destructive blast at all let alone unharmed, and the effects of radiation can reach far beyond the blast radius and linger for years after the initial explosion. The bomb is the trauma, and the site on which it is set to explode is our mind. Not body, the body can withstand and heal from many forms of damage, but the mind will carry the scars long after the body heals. In most forms of trauma it is the damage to the mind which is the most difficult to recover from, in this case the trauma resembles the nuclear bomb. Our minds have many mechanisms programmed in to cope with almost any situation in our lives, some of them we’re born with – our instincts to communicate and emotionally attach to parents and family are just as important to our survival as food and warmth. Some of them develop as we grow, we learn how to cope with social situations, changes to our environment, what danger is and how to avoid it. It’s usually whilst these survival techniques are developing that the bomb hits, and in those first micro-seconds before/during impact our minds have a decision to make – how the hell do we cope with this?? There is nothing in our mental archives that explains what this bomb is, why it has hit or when it will stop. There is nothing to suggest we will survive the impact and nothing to stop it exploding again later. We cannot cope with it, we don’t have the language, the concepts or the basic information needed to get help – so how do we cope with this explosion? How do we survive intact?

We run. We hide. We make a huge concrete reinforced steel lined box and put the bomb inside, then we bury it a mile underground in the deepest part of the ocean, set a guard of the most vicious sharks we can find arm them with machine guns and leave it alone. We can now ignore it, forget about it, the bomb never existed and the damage never happened – life can go on. Or almost, but unfortunately it’s not quite as simple as bury it and it’s gone; the tricky thing about nuclear bombs is the radiation. Radiation tends to leak, it’s difficult to keep it locked away, it will creep through the cracks in box and escape, silently it will poison all those parts of your life and mind that you managed to save from the main explosion. You may not remember the bomb, but you will get the panic attacks, the random moments of fear or anger, nightmares that make no sense – I call this leakage, and this is where the everyday dissociation kicks in, that floaty numb feeling and temporary memory lapses that sometimes get out of control and get you into trouble, but remember it’s your mind’s way of protecting you. The Dissociative Disorder is difficult, even debilitating, it sometimes causes as much pain as it blocks, but it’s there for the sole purpose of keeping you away from what’s in that concrete box – that is why I say I don’t suffer DID I endure it.

A few years ago I decided I couldn’t carry on living like that, totally dependent on my routine, afraid of any change, living most days in a state of semi-awareness worrying about finding my way home. So I made the choice for my life – I dug up the box, forced it open and faced the bomb. It was a choice between continuing to survive, or suffer, truly suffer, but with the hope that the suffering would subside and I could start to really live. I’m not fully there yet, I still have a lot to work my way through, but I can already tell I made the right choice. It’s been through facing the bomb that I’ve come to appreciate what the DID enabled me to do, I couldn’t have coped with this at a younger age, it saved me and let me grow up – not undamaged for as I said radiation cannot be contained as easily, but I still got through my childhood and adolescence intact and gathered some happy memories on the way. Now I’m an adult and I made a choice for my future, it’s a risk, but I’m old enough to gamble. Everyone has to make that choice for themselves, some will decide that the bomb is too powerful and it’s safer where it is, some will decide they can face part of the explosion but keep the rest contained, we’re all different, we all have our limits, but what we have in common is we each have that box, and that box saved us, and now because of that box we don’t suffer as we would have done, but we do have to endure.

Fighting the Fog

Am I real? Am I still breathing? Which is the way home? Is this my hand? These are questions I often ask myself. I’ve found myself staring at my hands wondering what they are, or looking down at the floor surprised to see my feet still standing on it. i call it ‘zoning out’ or ‘phasing out’ and the best way I can think to describe it is it’s similar to being very drunk or high, or even being on extremely strong painkillers or anesthetic. It’s for these reasons that I avoid alcohol and drugs – why spend a fortune when my mind can reach the same state naturally! For me it feels like being injected with anesthetic in the brain, I start floating away on cotton wool and I can’t feel anything, everything is far away and nothing is real. Being far away everything becomes mildly interesting, whether its a relationship breaking down, an on coming bus or an oven burn, it all gets the same response from me. Nothing hurts, but neither does anything feel good, everything is just mildly interesting.

If I could allow myself to just go with it, float away and let it happen it would be easy, but I can’t. I have 3 children; they need feeding, washing, clothing, the older 2 need to get to school on time with lunches made and the toddler needs constant supervision, I can’t afford to zone out and float off on cotton wool. I have to fight against it to stay focused and get through the day, but fighting dissociation is HARD. You are basically putting 2 basic instincts against each other; the dissociation is your shield, it protects you against anything that is going to hurt you, basically your mind has perceived a threat which could be real, imagined or remembered and it has gone into survival mode. Meanwhile you need to be present in your daily life and pay attention to people, do work, respond to situations appropriately, all of this requires you to be alert, focused and actively take part in life. Imagine yourself fighting strong sleeping tablets, heavy limbs, slow foggy mind, poor reactions. Noises get extra loud and lights go extra bright –  it’s no wonder I’m so tired all the time and get so many headaches.

I think a lot of people look at me and think there’s nothing wrong, I’m walking my kids to school, doing the shopping, talking to friends and so on. My house wouldn’t win awards for neatness but its clean and relatively ordered considering I have 3 tornadoes at home! The truth is these things are the secret to how I cope – they are part of my routine. I can function through the dissociative fog as long as I have my routine. I go to the same places at the same times on the same days, where I’m most likely to meet the same people and have the same conversations. By keeping everything the same I don’t need total focus to get through it, I can function. Any sudden changes that disrupt that routine and I breakdown, I can’t alter my plans and I can’t think around the problem and that will lose my battle with the dissociative fog. Naturally this means any plans outside the routine have to be made well in advance, I can’t go anywhere unfamiliar alone because there’s always that chance that I won’t remember the way home if I zone.

I’m better than I used to be at coping with this, I know myself better now, I know my limits and my triggers (mostly crowds, loud noises and drunk people) and I tend to make 2 or 3 plans incase something changes, although plans b and c will usually involve getting home and doing something soothing like read or play with the kids. As an added safe measure I have a card in my handbag with my diagnosis(+explanation) and emergency contacts incase I get “lost” while I’m out.

Doctors will always teach you grounding techniques and I know they will work for many people, but they’ve always been hit and miss with me, Sit on a chair and focus on your body, feel your feet against the floor, the material of your clothes, the weight of your legs against the chair, the rhythm of your breathing, this is supposed to ground you and convince you that your body is real and you are here – doesn’t work for me. It somehow makes me more aware that my body feels wrong and quite possibly isn’t even mine, it makes me marvel at how close everything seems yet its so so far away at the same time. The only grounding technique I have that works is my children and partner, they demand my attention and the maternal instinct wins the fight, but its a slow painful victory. For me at least, the only way to defeat the fog and keep living is by trying to keep going regardless and hold onto the most real things in my life as anchors. It’s difference between being a kite in a breeze and a scrap of cloth in a hurricane. Just remember what goes up must come down – the trick is not to crash…

Hello world!

Welcome to my new blog! I’ve been considering writing one for a long time, mainly because I know how little useful information there is out there for people who live with dissociation. If you want to find out what dissociation is, there’s plenty of descriptions and definitions, but lets face it when you live with something your whole life you don’t need someone else to describe it to you. I entered the er, supportive, *cough cough* mental health services about 15 years ago and have been passed from councellor to therapist to doctor and back again more times than I can count. It took 7 years to get my diagnosis and another 2 years before anyone bothered to tell me what it was! Each new person I saw I had to go over the same speech of what my problems are, then the same argument over whether I’m telling the truth.

Then in 2009 I was finally referred for psychotherapy, though due to waiting lists and so forth it was another year or so before I started it. It was the first time that I didn’t need to convince the guy I was dissociative, he understood and accepted me for it and that was a new experience from a mental health professional! Then last week, after 4 intensive years, it all ended. After 15 years I am an ex-service user, and my god it feels weird. I’m not cured, there is no cure, and I can’t say I reached my goals or found inner peace or anything, it simply got to the point where they had to let me go – long-term patients look bad on the books and management is keen to make the stats work in their favor. Apparently the maximum number of sessions anyone can receive these days is 30 – I’d love to see them try and use that approach on people with physical health needs, but maybe that’s a rant for another day.

So, 15 years and countless professionals later and here I am 28 years old, mother of 3 and starting a new chapter in my life. My only question is how do you survive post therapy? I’ve been told I can go back in  few years if I need to but that’s not as reassuring as everyone seems to think it is, that sounds like a safety net for when I fall on my face. I often wonder if anyone else has experienced these feelings after being ejected from the support services.

As a dissociative I tend to think about these changes in 2 separate ways – at times, like now, I can consider the facts objectively (and often sarcastically with an element of black humour) and look to the future logically weighing up my chances of success. At other times I can only feel the changes emotionally, and believe me the emotions are far less logical! Part of my therapy program was trying to connect my thoughts and feelings. Often I would spend session talking about painful experiences in a dissociative way, then several days later the emotional impact of what I said would hit me and all hell would break loose, so in session we would always have to be careful about how much we went through, as the more I went through the bigger the impact later.

Through my time with the services I’ve come up with many theories about the system, about the treatment options, about the awareness of Dissociative Disorders and symptoms and of course the mechanisms and the need for more research. In time I’ll probably cover all these through various posts and maybe (hopefully) they will help someone else who’s trying to understand what the hell is happening to them and how they can cope. For now I’ll leave this as my formal(ish) introduction to the world of blogs.