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?

L I S T E N   T O   T H E   V O I C E S

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.

C O N C E N T R A T E   O N   T H E   W H Y   R A T H E R   T H A N   T H E   W H A T

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.

S E E   T H E   P E R S O N   B E H I N D   T H E   S Y M P T O M S

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.

C O N S I D E R  T H E   L I F E   S T O R Y   B E H I N D   T H E   V O I C E S

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?

T H E   P U R P O S E   O F   T H E   V O I C E

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 ♥

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