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.

W H A T   I S   D I S S O C I A T I V E   I D E N T I T Y   D I S O R D E R ?

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.

D I D   I S   N O T   A   G A M E

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.

D I D   I S   N O T   T H E R E   T O   E N T E R T A I N   O T H E R S

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.

D I D   I S   N O T   A L W A Y S   O B V I O U S

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.

D I D   I S   N O T   A   W A Y   O F   E S C A P I N G   R E S P O N S I B I L I T Y

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.

D I D   I S   N O T   S O M E T H I N G   T O   B E   G O T T E N   R I D   O F

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.

D I D   I S   A   V E R Y   F U N C T I O N A L   C O N D I T I O N

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 ♥

The Elephant in the Room this Holiday Season

I’m writing this right at the end of the holiday season, but this topic featured quite prominently in my experiences over the festive period, and I’m hoping others may be able to relate on some level.

So, the elephant in the room – the subject or issue that often stares people in the face in social situations yet remains unspoken as there is unease and discomfort attached to it.  Its presence overt nonetheless and shared through awkward silences, averted gazes and strained smiles.

The example that always comes to mind that for me best describes the elephant in the room is from a scenario in which I went to a meal with a group of friends.  When one particular friend arrived at the table and sat down, it was instantly noticeable that her arms were covered in bruises.  Silence fell.  Everyone was most probably thinking along similar lines… OMG what happened to her?  Has she been in a fight?  Has her boyfriend been hitting her?  Thankfully, the silence was quickly broken by one of the bolder of my friends who asked openly about the bruises.  It turned out that she had been paintballing the day before! (Rather her than me!)  We all breathed a sigh of relief.

What I’ve discovered though through recent experiences is the subtle irony of the elephant in the room.  Despite being so obvious and noticeable to the beholders, the issue may not be the one most prevalent or significant to the person concerned.  You might recognise some of the signs that something connected to you is the elephant in the room, but it often is not immediately obvious to you what the issue actually is, adding to the awkwardness.

Unknowingly, I brought an elephant into the room, or rather several rooms, over the holiday season.  My elephant in the room was my weight loss.  I sensed its presence in every concerned look exchanged by friends and family.  It was almost as though I could read their thoughts.  Overheard comments and mumbles confirm it.  When those brave enough to express their concerns but vaguely, skirting around the issue, it confirmed it further.  Sometimes you just wish people would come out and say what they’re thinking because then you might be able to set some of their unspoken thoughts straight and their worries at ease.

Please rest assured that I am not going to go into detail and specifics regarding my weight loss.  It is not my intention to trigger anyone, quite the opposite in fact!

It is around this time of year that you often meet up with people you may not have seen in quite a while – something, for the most part, I look forwards to (if I like the people concerned that is!).  In this context in which you are around others who haven’t seen you in a long time, any changes to your physical appearance that may have occurred suddenly become noticed and brought to the forefront, even if to you those changes are no longer new or important to you.

What I find interesting, or annoying even, is that some people seem to think it’s perfectly acceptable to make personal remarks about someone being ‘skinny’.  Even at a healthy weight, I have always been a slim build, and I remember at work once someone said to me, “You’re so skinny!  Go eat some chocolate or something and stop making everyone else feel bad!”  It wouldn’t be the first time that I’ve been subjected to remarks of that nature.  However, if someone was to say, “You’re getting so chubby.  I’d lay off the chocolates if I were you!” – it would be rightly met with outrage!  Yet as far as I’m concerned both remarks are equivalently awful – both have the potential to make others feel just as uncomfortable.

I’m pleased to say that I have not had to endure such comments this holiday season, but in some ways I wish I had, because at least you know where you are and it is out in the open, rather than having to contend with the awkward silences and concerned gazes.  The most frustrating thing about the unspoken elephant in the room is that sometimes you can sense what people are thinking and it is far from what you know to be the truth.

I feel like I am writing about all this in an arguably, equally frustrating vague and elusive manner.  Put more explicitly, what I discovered this holiday season through my elephant in the room is that the only thing worse than suffering from anorexia is when people think you have relapsed back into anorexia when you haven’t.

I don’t write these words lightly.  I can understand why upon seeing a person who has visibly lost a significant amount of weight in a fairly short space of time, the conclusion that the person may be suffering from an eating disorder may be the first one you come to, especially when it’s known that the person has a history of suffering from an eating disorder.

If you’ve read my previous blog, then you will probably know that I have a long history of anorexia nervosa.  I believe I developed anorexia at the age of 7, way before I had even heard of it, let alone knew what it was.  It is an issue that is deeply rooted in trauma for me.  I certainly don’t consider myself fully recovered by any means, but for the past few years or more I have consistently managed to maintain a much more ‘recovered’ lifestyle and regular routine of eating than ever before, and, as far as I can fathom, also managed to maintain a vaguely healthy weight (I found the best way to manage my eating disorder was not to weigh myself).

I have not fallen away from striving towards a more recovered lifestyle, if anything, I have made significant improvements and strides forwards!  I have questioned myself whether anorexia has crept back in and has drawn me into a state of denial, but I know in my heart that something rather different is happening.  The truth of the matter, as I know it, is that I have unintentionally lost what others seem to be describing as ‘a lot’ of weight over the space of a few months, if that.  Given my past ED struggles, I do have quite distorted body image, and it is not always apparent to me if I’ve lost weight.  However, in recent times, even I have thought that maybe I have, which is saying something!  As I’ve said, the weight loss has been completely unintentional, if anything it has occurred when I’ve been trying harder than ever where food is concerned.

I’m finding it hard to be making repeated references to weight in this post, because as difficult as it may be to believe given what I’ve divulged about my history of anorexia, weight isn’t actually very significant to me.  It was never about the weight.  Surprising to others perhaps, but I have come across many others with anorexia who have said the same.

As far as I’m concerned, it still isn’t about weight.  From my perspective, over the past few months I gradually became aware of a problem – a problem which I never envisaged I’d have to face.  For once I was actually aware and concerned about the problem.  I knew in my heart that this was not my own doing or anorexia’s.  My biggest fear was that no one was going to believe me in light of my history.

Much to my relief though, where it really mattered, I was believed.  For the first time in my life, I had a very open and honest conversation with my (amazing) GP about what I was eating on a daily basis, and how this was actually an improvement on past efforts.  Thankfully, my GP agreed that there was no way that my intake could account for the weight loss – there must be something else going on.  As yet I don’t have any answers – it is one of many things relating to my physical health that is currently being investigated.  Perhaps that’s what adds to the difficulty – I can’t tell people definitively what the problem is as I don’t even know myself.

As I mentioned in my previous post, during the year just gone, I found out that I have PoTS – Postural Orthostatic Tachycardia Syndrome.  Thanks in large part to my GP who spotted the signs and symptoms of the condition!  PoTS can cause digestive issues, which unfortunately is seemingly the case for me.  It is thought that my recent unintentional weight loss is most probably down to a digestive issue of some description linked to PoTS.  This does seem to fit as it would coincide with the period in which my PoTS symptoms became more severe and consequently more noticeable.

This change of affairs in my life has made me much more thoughtful and aware of other causes of weight loss besides eating disorders.  A few months ago when PoTS became a nameable ‘thing’ in my life, I came across the Youtuber/blogger Chronically Amy, who also suffers from PoTS as well as several other chronic illnesses!  I was shocked to discover that she had experienced verbal abuse from complete strangers when she wore a nasal gastric tube in public.  The hurtful comments she received from members of the public were made from the assumption that she had an eating disorder and that her suffering was self-inflicted – an unjustified and hurtful judgement to make in any case.  The truth of the matter was that she wasn’t suffering from an eating disorder.  She had gastroparesis – a condition in which the stomach and digestive system becomes effectively paralysed and so doesn’t work properly.

Relating back to my experiences during the holiday season, the only way I can attempt to explain it is that it is incredibly frustrating when others falsely perceive you to have fallen back into an illness you have worked so hard to rise out of, and when your truth is that you have been fighting harder than ever despite lack of appetite, persistent nausea and intestinal discomfort.

I’m struggling to ascertain the point I am trying to make.  Would I prefer if people openly and publicly declared their concerns that I may have relapsed back into anorexia?  Definitely not.  On the flip side, would I prefer if people weren’t concerned at all?  Of course not – concern shows they care.  Am I saying that people shouldn’t suspect an eating disorder when faced with someone who is visibly underweight?  I don’t think so.  It’s a logical conclusion that I have made myself, and it is usually made from a place of care and concern.

I think what I want to achieve through sharing all this is to raise awareness about how an issue can be so much more complex than how it may appear on face value.  The first conclusion you come to may not always be the right one.  Perhaps this is my way of bringing my elephant in the room out into the open and maybe, in turn, it will bring it out for others as well.

So that was my elephant in the room this holiday season.  I’d be interested to hear of any you may have encountered, especially if sharing could help.

Lorna ♥

My christmas card design for this year