A Few Things I want you to Know about Dissociative Identity Disorder

I am breaking a very long hiatus to share a few thoughts about Dissociative Identity Disorder that I think are important for others to understand.

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I have previously written about Dissociative Identity Disorder on my old blog when the diagnosis was quite new to me.  As a short summary, the way I would explain DID in my case is that throughout my childhood I suffered multiple traumatic events.  It is as though parts of me got stuck and split off at the ages when these traumatic events occurred.  They held onto to the trauma so I could find a way to go on living.  Some people who have DID have ‘alters’ – alternative identities with different names, personality traits and histories.  This is not my experience.  On reflection, I have seen that there was potential for this to happen in my case, but I experience my dissociative parts as younger versions of myself who make up who I am today.  Dissociative disorders occur on a spectrum.  Everyone’s individual experiences will be different, but no less valid.

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DID is rooted in trauma.  It is not a choice.  Speaking from experience, life with DID can  be complicated, confusing, disorientating, exhausting, conflicting and isolating.  It’s certainly not something that is put on for the fun of it, to make life more interesting, or to make personal gains through.  During hospital admissions, I have been accused by some mental health professionals of ‘playing a game’ or ‘messing around’ when I have dissociated into other parts of myself triggered by flashbacks to traumatic events.  I would love it if DID was just a game that I could stop playing, or switch off whenever I want to.

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I have found it incredibly difficult at times when people have expressed that they are ‘excited’ to meet, and ‘really want to meet’ other parts of me.  I’ve even experienced people seemingly deliberately trying to provoke me to dissociate into another part of me for their own entertainment.  I understand how as a phenomenon, DID could be thought of as a really interesting, alternative and even ‘exciting’ way of being.  It’s an experience that most people don’t have, so I get that others might be curious and want to at least see it for themselves.  However, dissociation happens for a reason.  Something has to trigger it, and most of the time it’s traumatic memories or distressing emotions.  If I dissociate, that might be the worse and most distressing part of my day.  Dissociation is exhausting, confusing and disorientating.  It leaves me feeling very vulnerable.  Especially if it occurs in front of someone else.  I find it quite upsetting and disturbing that someone would be excited at the prospect of me being left feeling like that.  Also, when it feels like people are pushing to see other parts of me, it causes my system to clam up, and makes it less likely that they were come out.  DID is protective.  Many parts of me were born out of traumatic experiences in which others made us do things we didn’t want to, or used and abused us for their own gains.  The slightest hint of that dynamic occurring again, and we’re out of here!  There are many situations in which it is important in terms of safety for me, the adult part, to remain present.  If I don’t dissociate in front of you, I’d try to see it as a positive sign that I am managing the condition well, nothing’s upset me, and I’m feeling safe.

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I feel there is this stereotype of DID constituting a dramatic existence whereby someone makes several artistic dress changes across a day and is leading multiple extravagant lives with separate sets of friends and relationships.  DID can make life feel quite colourful at times, but not that colourful!  The truth as I see it, is that most people with DID are just going about their daily business, trying to survive and navigate an existence in a world that can feel very scary and bewildering at times.  Most of my closest family and friends have no idea that I have DID and have never even questioned it.  Why?  Because this is the only way they’ve ever known me, and most people aren’t on the look out for it.  DID is a comparatively unknown mental health condition, and is also most likely under-diagnosed.  I wasn’t diagnosed until the age of 22.  Yet I had lived it my whole life, and had been under mental health services for years.  What some people might see as indicating DID is referred to by others as being ‘quirky’, ‘complicated’, ‘complex’, ‘young at heart’, ‘a liar’ even, or just me being Lorna.  DID sort of becomes your longest and best kept secret.  It’s the bit of you that you feel you have to hide away because it seems so ‘abnormal’ and ‘different’ to other people’s experiences that you find yourself doubting if it’s even true, and you certainly can’t let it show.  It actually felt like a really unusual and unsettling experience when DID started coming out in therapy.  It became more of a shared experience between me and my therapist, and that felt scary, like breaking a habit of a life time.

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This idea has arisen from popular box-sets and true crime series that DID provides a means, or an excuse, to be able to commit horrific crimes under an alternate identity, and then be absolved of all responsibility for them.  The reality is that people with DID are far more likely to become the victims of crime than the perpetrator.  The idea that DID can be used as a guise to ‘get away with stuff’, no matter how minor, does not sit well with me and my system.  It is definitely difficult at times to come to terms with things you have said or done, especially if you have no memory of it, it seems so out of character, and you feel as though you have no control over your life.  However, I always take responsibility for the actions and decisions of other parts.  Even if it puts me in awkward situations.  Even if I have no memory of what happened, feel incredibly embarrassed, or can’t believe what a part of me did.  Because my parts make up me, and therefore I have to accept and take overall responsibility for everything done by me, in whatever shape or form.  And I can only hope that my honesty and accountability is met by kindness, compassion, and the attempt to understand.

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I am often met by this notion, sometimes even by mental health professionals less familiar with the condition, that DID is something that I need to fight, battle and slay in order to become ‘well’, ‘normal’, or a regular, civilised member of society.  I don’t see DID as a mental illness, or something that’s wrong with me.  I see DID as something that’s right with me.  It’s what helped me to survive and achieve all I have done in my life.  Integration back into a single identity is held by some to represent the ultimate recovery destination for those with DID, but I suspect it isn’t the one most people who live with the condition are seeking, or would want to.  My existence is definitely more integrated than it has been in the past, but it’s not something we find helpful to dwell upon.  We see it more as life feeling more manageable.  Why would I want to ‘fight off’ or ‘get rid of’ my closest, longest-serving friends who have held my hands every step of the way out of the dark shadows of trauma?  I only started to move forwards with my life as a whole when I accepted and embraced having DID.  Acceptance, understanding, and open communication is the way forwards for me and my system.  Rather than seeing DID as something a person needs to get rid of or fight, encourage teamwork and cooperation between parts.

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The whole point of DID is to survive and find a way to live and function in spite of traumatic experiences.  DID makes it easier to compartmentalise different aspects of our lives and store skills, interests and information in separate, but easily accessible places.  This element of DID is something I think we can all relate with to some extent.  People often talk about needing to put their ‘work head’ on.  And the way we behave at work is likely to be quite different to the way we behave at home.  Compartmentalising different parts of our lives can make everything feel more manageable and enables us to ‘switch off’ when we need to.  DID is at the extreme end of this spectrum, so arguably, it could make us even more functional.  People often express surprise when I tell them what I’ve achieved in my life while having DID – school, college, university, employment, living independently etc. – all the ‘ordinary’ stuff!  The reality is that people with DID may have high-flying careers, work in services that care for others, they may have families and children, and have every chance of achieving extraordinary things.  And most onlookers would never know that underneath the surface, they were navigating complex internal experiences that no one else can see.  There is even a psychologist, Dr Jacqui Dillon, who is diagnosed with Dissociative Identity Disorder.

PEOPLE WITH DID CAN LEAD MEANINGFUL AND FULFILLING LIVES WITH SO MUCH INSIGHT TO CONTRIBUTE TO THE LIVES OF OTHERS.

Lorna ♥

Hearing Voices isn’t such a bad sign…

I’ve been wanting to write another blog post for what feels like ages but other things got in the way.  It’s a topic that relates to one of my very early posts on my previous blog.  My thoughts are very different to what they were then so I feel like it is time for some long overdue reflections and updates.

The words that always still comes to mind whenever I think of the phenomenon of hearing voices is a quote from Harry Potter and The Chamber of Secrets…

‘Hearing voices isn’t a good sign Harry, even in the wizarding world.’

I would say the same remains true in the muggle world.  Hearing voices is presented as something that shouldn’t be happening, even by mental health professionals.  It’s seen as the pinnacle severity of mental illness and something that has to be eliminated to ensure wellness again.  In my previous blog post on hearing voices, which was written over 4 years ago, I gave the impression that I was striving towards a voice-free life, but in truth, I was just shutting them out because I felt well in so many other ways, and the line I was being fed by mental health professionals at the time was that hearing voices was something that needed to be stopped in order for me to be considered ‘well’, and it’s in my nature to try to please.

Hearing voices isn’t the extraordinary phenomenon many people imagine it to be.  I think we could all relate to the idea of our thoughts becoming very loud and intrusive – the line between what some perceive to be separating sanity and insanity is much finer than many would like to believe.

The truth for me is that I never knew that hearing voices or seeing things that other people can’t was anything out of the ordinary until someone told me that it was.  It was my normality.  It still is.  People tend to automatically associate auditory and visual hallucinations with psychosis and schizophrenia, but hearing voices is a symptom that spans across a wide range of mental health difficulties, including but not limited to eating disorders, OCD, personality disorders and trauma related conditions.  Not only this, but outside the context of mental illness, I have come across some people speaking of hearing a voice in their head telling them to do something, or not to, almost like an extension of their conscience.  The phenomenon of mistakenly seeing a vision of a loved one who has passed away is also widely reported.  This is something I have experienced myself, as have some of my family members who have never considered themselves as suffering from mental illness.

In my case, some of my earliest childhood memories were of playing with a little girl who looked like me and had the same name as me but that no one else seemed to be able to see.  I have heard conversations between voices in my head for as long as I can remember, and people would frequently accuse me of talking to myself, when, as far as I was concerned, I wasn’t.  This was my reality, my life.  It was all I knew and I could only assume that this was how it was for everyone else was as well.  Nothing could have prepared me for the look of utter horror that fell upon me as a teenager when for the first time I said out loud that I heard voices.  My world shattered around me.  I quickly discovered that while this was my normal, it clearly wasn’t what other people wanted to hear about.

I put my walls back up around me and retreated back into silence, even if my head was anything but silent.  From time to time I experienced that look of concern again.  A look that said – this shouldn’t be happening, we need to stop this.  I learnt to meet that concern with denial.  Until one day someone saw past me giving the answer everyone wanted to hear.  Someone asked me something different, “What are they saying?”.  That someone was my current (amazing) therapist, and I hadn’t even said I was hearing voices, in fact I repeatedly denied it, as I’d learnt to.  Never in all those years had anyone ever asked what the voices were saying or anything about them.  It was as though they didn’t care to know, or maybe they were afraid to.  It took a fair while for me to accept and let someone else into my internal world when I had built my walls so high and denied its existence for so long, but taking that leap of faith changed so much.

I wasn’t crazy, weird, or ‘different’.  There was a name for what I was experiencing – Dissociative Identity Disorder.  These younger parts of me and their voices were what helped me survive, they deserve better than to be banished and dismissed.  I was led to my most important life lesson to date – to work with the voices and not against them.  It was that lesson that changed so much.

Dissociative Identity Disorder is a condition that is not very well known or understood, even among mental health and medical professionals.  I have still experienced that concerned look from a number of professionals who are less familiar with the condition or who were not fully aware of my history when they ask me whether I am hearing voices or seeing things that other people can’t see.  They then appear even more concerned and quite taken aback when they hear my response.

“Yes I do hear voices in my head and I do see younger parts of me visually in front of me at times, but that’s nothing out of the ordinary for me.  It would be more unusual for me if they weren’t there.”

I have ended up with some rather entertaining reports stating something along the lines of: ‘Lorna experiences both auditory and visual hallucinations but she says it doesn’t bother her!’  That isn’t true either!  Dissociative Identity Disorder does bother me.  Sometimes it feels like there’s a whole world going on inside my head that no one else can see.  Sometimes I feel torn and conflicted, pulled in several different directions at once.  Sometimes those other parts of me feel like my own worst enemies, but I wouldn’t change any of it for the world.  Those parts of me are what makes me me.  Losing them would be like losing a close relative, a best friend who has always been there, and I’d lose myself in the process.

I’ve also had the experience of professionals seeing me dissociating and switching between parts in front of them as a sign of me being ‘unwell’.  When really it is just a sign of me responding to a situation in which I feel overwhelmed or that has triggered something from my past.  The reality is that they are just seeing a small proportion of what is going on in my head the majority of the time.  The only difference is that it is out there for them to see.

This brings me to the main point of this blog post…

What if the thing that others see as a sign of you being unwell and are wanting to get rid of is in fact an integral part of your life?

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Those voices have come into your life for a reason, even if that reason never becomes clear.  I honestly can’t explain fully just what a difference it made to have someone encouraging me to see the positives of having DID and all that comes with it.  Dissociation is such a clever survival mechanism and it can become a really effective coping mechanism if used in the right way.  I’m sure most people can relate to the idea that if you shut something out, it just comes back ten times stronger.  Hearing voices is the same.  If you ignore them or shut them out, they just shout louder.  So listen.

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When I say listen to the voices, I’m definitely not saying that you should do what they say, especially if they are instructing you to do something harmful.  I have experienced parts of me telling me to kill myself, to jump in front of trains, to jump out a window, and to engage in countless other self-destructive behaviours.  Obviously I did not do what they told me, otherwise I wouldn’t be here today, but that doesn’t mean I didn’t listen.  By listening I mean that I try to consider why parts of me are saying what they’re saying.  Are they scared, sad, excited or overwhelmed?  Are they worried about something?  Are they expressing a need?  Can that need be met another way that does not involve harm?  I find that it’s no different to dealing with people – once someone feels listened to and as though their concerns are being heard and addressed, they quieten down.

I am aware of the fact that I am writing this purely from the perspective of suffering from a trauma-related mental health condition that involves hearing voices.  As I stated at the beginning, hearing voices is a symptom that can occur across a wide range of mental health problems.  However, I believe that a lot of the advice I’ve shared may still be applicable to others to some extent.

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As far as I know, I have not personally experienced psychosis, but through my journey  with mental health I have come across others who have.  From what limited understanding I have of it from seeing people being treated for psychosis, the focus among professionals seems to be assessing and identifying the symptoms and using medication primarily to treat it, reduce the symptoms, and ultimately get rid of them.  Similarly to my own experiences with DID, I find that with psychosis, a lot of professionals tend to focus on the symptoms rather than the person – the what rather than the why.

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I am not suggesting for one minute that all psychotic episodes are rooted in trauma, but most people I have come across who have experienced psychosis would agree that significant life stresses and events seemed to precede an episode or exacerbated their symptoms further.  I remember watching a documentary about bipolar a good few years ago by a German psychologist who highlighted a very crucial point – there is a tendency amongst mental health professionals to focus on what symptoms people with bipolar are experiencing in the here and now, rather than asking what happened to them?  What was their life story?  What was happening in their life in the lead up to them developing bipolar?

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There was also a brilliant documentary on hearing voices by BBC Horizon a couple of years ago, which I’m so glad I’ve just managed to find again – Why Did I Go Mad? .  The documentary focuses on auditory and visual hallucinations within the context of psychosis, but I remember being stunned at the time by just how much I could relate to the experiences shared by the people who featured in the documentary, which is what makes me think that my reflections on hearing voices may be relevant universally.  ‘Why Did I Go Mad?’ incited a radical rethinking of the traditional approach of psychiatry of treating symptoms that are regarded as indicative of ‘psychosis’ through medication, with the goal of ridding the individual of those symptoms.  Alongside the treatment of medication, psychologists explore the role that the hallucinations people experience play in their life.  For example, it was found that certain voices or visual hallucinations tended to feature when the person was experiencing a situation that involved fear, almost acting as a warning sign, or triggering memories of previous situations in which the person experienced fear.  What may come across as a particularly dark or nasty presence or voice, might actually be serving a protective role. By considering the potential purpose or function of the voices people hear and attending to the thoughts, emotions and memories brought up, it was found that the voices would lessen in intensity and the distress caused.  Listening is the first step to understanding.

S T O P   T H E   S T I G M A  :  E V E R Y   V O I C E   I S  T H E R E   T O   B E   H E A R D

It is clear that there is still so much stigma attached to hearing voices, which needn’t be there.  Voices don’t exist in isolation.  There is a person behind every voice.  There is a purpose.  There is a reason, no matter how unclear.  There is a story behind every voice that needs to be heard.  I have learnt so much from listening to the voices I hear, not just about myself, but about life and building positive relationships with others.  I hope that by sharing these reflections about my own experiences of hearing voices, I am doing my little bit to lift the stigma that surrounds hearing voices.

Every voice deserves to be heard.  So don’t shut them out.  Hearing voices is a part of people’s lives and you can’t shut life out.

Listen.

Lorna ♥