Next steps

Something very exciting is going on in my life. After 3+ years of illness and recuperation time, I'm finally well enough to go back to studying. I'm applying to do a PhD in Counselling Psychology. To start this September! (Arrrggghhh!)
Of course I have all the predictable nerves; will I get an interview? If I get that far, will they allow me onto the course? If I make it onto the course, can I cope with the workload? And so on and so on.
It feels like the right thing to do. It's the culmination of my last 10 years in education, training and work. At the moment I'm busy putting my application together, writing my personal statement and scanning loads of documents to prove I meet the entry requirements. 
I'll keep you posted as to how I get on! 

Think yourself happy?

Anyone who knows me will tell you I'm an optimistic person. I tend to look on the bright side. You might think, then, that I'd be a fan of 'the power of positivity.' Not so much. Here are a few thoughts as to why. 

I recently found some paperwork from one of my hospital stays. It was something called the 'Recovery Star.' One arm of the star was optimistically titled "trust and hope." One line in particular stood out. It said : "think happy thoughts!" So there I was, clinically depressed in hospital, exhorting myself to think like a happy person. "Was this really the right approach?" I asked myself. 

You see, to me, "think happy thoughts" is synonymous with the idea that we should be 'battling,' 'fighting' or 'striving to overcome' adversity in health. The same language seems to be used whether that adversity is cancer or depression, to name but two. Yet this kind of thinking isn't applied to all health issues. You don't hear about positive thinking mending a broken leg, do you? 

Encouraging people to 'think themselves happy' implies that we have a choice and suggests we could rise above depression, if only we employed a bit of positive thinking. I am yet to meet a person with depression who would agree with this statement. Surely, if this were true, there would be no such thing as depression in the first place. To imply choice in response to trauma and distress suggests a distinct lack of understanding when it comes to human suffering. 

Telling ourselves to think positively when we feel the absolute opposite actively encourages us to be incongruent. It encourages us to push down the reality of how badly we feel, when doing so is perhaps one of the reasons we feel so terrible in the first place.  

To me, 'think yourself happy' veers dangerously close to 'pull yourself together' territory. It puts the responsibility for wellness (or conversely, illness) in the hands of the very person who's suffering, as though a person's own 'faulty cognitions' are the very reason why they are struggling. Guilt about being unable to think themselves happy is unlikely to help any person in distress. And when we aren't able to harness the power of positive thought, when our distress or trauma is so deep that no amount of positive thinking helps, have we "failed?" Similar to patients who are said to have "lost their battle" with cancer, have people with depression who fail to 'think happy' lost their battle? What hope for them then? 

People hurt. Terrible things happen. To respond from a place of pain is a perfectly legitimate response. Privileging an "I've got over it, so can you" narrative is arguably a way of de-legitimising people's understandable pain and suffering, a way of seeking to erase it from existence. Perhaps this is because we are so uncomfortable with others' pain? 

I'm not for one moment suggesting that sadness is good, that there is nobility in suffering. I'm simply saying that sadness, grief, trauma and despair are all part of the human condition. It's not for others to tell us to 'think ourselves happy' and maybe we could think about giving ourselves a break when we aren't able to manage it. 

Positive psychology has its place and positive thinking can be immensely helpful in times of strife. Sometimes it's all we have to keep us going! My concern is when 'thinking yourself happy' becomes a panacea for all our psychic ills, because a positive spin on life's events doesn't stop shit from happening or fix the underlying problem.  

Family matters

Whilst writing my blog post this morning, it occurred to me that I haven't mentioned the boys in quite a while so here's the latest. 

Things are generally going well. Both boys are now severely deaf and they cope so well with this, thanks to the wonders of technology. Their hearing aids do a fantastic job and at school they use radio aids. They've also developed amazing lip reading skills, so gone are the days when I could get away with whispering to James whilst they're in the room! 

Kidney wise, things are stable. Joe takes medication to protect his kidneys from further damage and this is working well. Yes he has reduced kidney function but the decline is slow and within what's expected for a boy of his age. Evan's kidneys are holding up well, so he doesn't need to take medication as yet. We are now on six monthly check ups with all the specialists involved and they book double appointments for both lads; a lot more manageable than them seeing each specialist separately, every three months.

In other news, we now know that Evan is on the autism spectrum, with Aspergers. This explains a lot as Evan has always been different to the average boy of his age (in lots of good ways!) It took a long time for the doctors to disentangle the deafness and autism stuff, because they are both in play at the same time. Getting a diagnosis has been helpful from the point of view of understanding Evan and helping him to understand himself, but less helpful in terms of support because unfortunately there isn't much available. 

In general, both boys are doing really well. Joe has just chosen his options for year 9 and Evan is about to finish primary school, so will be joining his brother at high school in September. Joe has a brilliant social life through high school, so we are hoping Evan will blossom in a similar way. Evan is still playing the drums and has recently added the trumpet to his musical repertoire.  

We will be moving house any day now, so that's our main focus at the moment. Just a few short weeks now until the school holidays - we can't wait to spend them in a house with a garden!   
 

What went before and where I am now

This is my first blog post this year!
I've been wanting to write for a while, but I found myself with a stubborn case of writer's block. What follows  is a stream of consciousness, rather rough post about how I feel my brain has changed whilst taking anti psychotic medication.

Some of the differences between my meducated brain and its non medicated counterpart are difficult to quantify because they are inner ones, so they don't translate into outward behaviour change. A good example would be the relative suppression and quietness of my imagination and inner mental life on the meds. When I'm well and unmedicated, my imagination leaps about and grabs my attention, intruding into my daily life in surprising ways. I might be sorting out the washing and suddenly my mind will present me with, say, an eloquent and perfectly coherent response to a newspaper article. I might invent a gadget, or solve an imaginary crossword while creating a meal planner for the following week. Doing several tasks at once used to be my forte. That kind of thing simply doesn't happen in my medicated brain because I've got enough on my plate focusing on whatever task is in hand. I can no longer engage in ridiculous flights of fancy or fantasy. It feels as though a chemical limit has been imposed on my mental activity.

My speed of thought is considerably slower on the meds and I'm much less "present." My focus and concentration have been seriously affected, as has my cognition in general. It's no surprise that completing my PhD became an impossibility. 

My personality has significantly altered, too. I mean I'm still recognisable as "me," but I'm much, much quieter. Less light hearted. I struggle to see the humour in things I used to find hilarious. My whole character is muted. I no longer sparkle. I seek company much less often, preferring to be solitary. I struggle with talking to people I don't know well, something that never used to be a problem. I have become a ghost on social media, whereas I used to be chatty and outgoing.  

How much of this is down to the medication and how much springs from being unwell, I don't know. I'm hopeful that it's the former because I'd hate to think that the changes were permanent. I can come off medication, after all. 

Having mental health troubles for the last three years has severely dented my confidence, both as a person and in my abilities. Losing my PhD was a big factor in this, although I have no doubt that leaving it was the right decision at the time. At the moment, I don't have anything in my life to replace it, so now that I'm starting to feel a little better, I'm also feeling directionless and lost. 

I told my psychiatrist about my perceived limitations on thinking and speed of thought and he looked at me as though I was, well, mad. It was as though I should feel grateful for being able to function at all. And from a mental health services perspective, I can see it's "job done" because I'm no longer acutely unwell. Yet true wellness, for me, would mean being able to resume activities similar to those I took for granted in my pre-illness state. 

I wonder whether my wish to recapture my pre-breakdown faculties is a bit of a 'first world problem.' Then I remember that the brain is what makes us who we are. Altering the way my brain works with strong medication has changed who I am. I think that was the right choice while I was acutely unwell, but now I'm starting to feel better, I'm looking forward to a meds free future. 

The way things are

I haven't written a blog post in many months. Much of the time I've lacked all motivation and simply been too unwell to concentrate on writing. That period has, I hope, come to an end. 

I've recently reduced my anti psychotic medication and I can feel my motivation flooding back. This is incredibly welcome. I've always been a busy, active kind of person but during the last two to three years I've been sluggish, lethargic, slow. My brain has been crowded with noise and clamour, my thought processes like glue. I almost forgot what it was like to think about anything other than the day to day. The medication softened the voices and visions but it did so at a heavy cost. Now, slowly, painstakingly, my brain is emerging from the fog, like dinosaur bones spat out of a glacier after several thousand years. 

For the first time in a long time, I feel alive and full of promise. I want to grab hold of this feeling and hold it close, in case it escapes. 

Consider yourselves warned!

Our lives take us down so many pathways; some turn out to be blind alleys, whereas others become wider and grander, tree lined and fruitful. I could have been a counsellor, an insurance broker or an academic; each were possibilities at one time or another. But in the end, writing drew me to its heart. I've always dabbled with the written word, albeit haphazardly; a blog post here and an essay there, perhaps. Despite positive feedback, it never occurred to me that I had a particular talent for it and making a living from my writing seemed about as likely as being accepted by NASA as a would-be astronaut.

A conversation with a friend has changed all that. From now on, I'm going to write. This is me going public with my intent to write a book. It'll almost certainly be non fiction but that's about all I know at the moment. Exciting, yes, but also a little scary.

If you're reading this and thinking "she's delusional," you may possibly be right. But I'll never know unless I try. I know the odds are stacked against me, especially as I know next to nothing about the practicalities, I just write. Quite often, the words write themselves and it's almost a supernatural experience. Nobody has yet been able to explain how this happens, least of all me. I realise that there's a big leap from 'fortysomething failed PhD student and occasional blogger' to 'writer' but we all have to start somewhere. So this is me, starting.

Goodbye to all that

Well folks, my PhD career is officially over. I'm sorry to say that my wobblesome mental health led to me officially withdrawing from my studies this week. I realised I couldn't give my PhD the kind of attention it required because I was too busy looking after myself and trying to get well. Like most things in life, I reckon a PhD is only worth doing if it's done well and sadly, the standard of my academic work was slipping. I wasn't happy about doing substandard work and decided, on reflection, that I'd rather give it another go at a time when I can give my academic work its full attention.

This decision has been several months in the making and has the full backing of my academic supervisors. It's sad in a way as I started out doing so well but as academics are fond of saying, a PhD is a marathon not a sprint and I just couldn't maintain the high standard required once my health got in the way. 

I realise that many people lose a lot more than a PhD opportunity thanks to ill health, but it's been a significant loss for me and I'm, well, I'm gutted. I'm also a bit confused and bewildered about what to do next - my passion is mental health but I'm unsure about my next steps  in this area.  

On the plus side, taking a step back from academia means I can make my own mental health the priority, along with focusing on family life. (And yes, I realise that I sound a bit like a resigning politician here - "I'm stepping down to spend more time with my family!") But it's true, there's plenty going on with my family at the moment - good stuff, mainly - so I won't be short of things to do whilst I'm deciding what to do next.

Hearing voices

Those who don't hear voices might consider the experience frightening, or as evidence of madness. Some people associate it with religious zealotry or even criminality. However, my experience of hearing voices ranges from being ordinary and everyday, to being something of an ordeal.

The author Jeanette Winterson reminds us that in the past, voices were seen as respectable and desired. In her book 'Why be happy when you could be normal?,' she describes voice hearing as a phenomenon experienced by "the visionary, the prophet, the shaman and the wise-woman. And the poet, obviously." Others see voice hearing as a creative and ingenious survival strategy, a meaningful experience to be explored.

Long before I started hearing voices, I heard my own thoughts in audible form. I was shocked as a child when I discovered that not everybody hears their own thoughts. I wonder to this day what it might be like to have a quiet mind, since mine is often chaotic and messy, with thoughts being so simultaneous that I'm assaulted by a cacophony of noise. That's why regular peace and quiet is so important to me.

My experience of voice hearing is different to my audible thoughts. "Voices" sound as though somebody is standing by my side, speaking to me. I know that if I can't see anybody there, the voice is coming from inside my head. I can then choose to ignore the voice or take notice of it if it's telling me something useful! Voice hearing isn't always unpleasant you see; sometimes the voices are helpful, for example, reminding me of important things I need to do or think about. Occasionally my voices are humorous.

I recognise a range of different voices, but every so often an unfamiliar one joins the crowd. I usually hear the voices one at a time, but during periods of extreme stress, I hear multiple voices, sometimes talking between themselves or competing with one another for attention.

Sometimes, the tone of the voices changes from neutral to negative and they become hostile and critical. Occasionally the voices take on a sinister tone, urging me to take action which would be harmful. Music through headphones helps, as does distraction, but in rare cases, when the voices are commanding, I'm at risk of acting upon what they tell me to do. This is when I choose to take medication. The medication quietens things down but it does so at a significant cost. My intellect is dulled. I lose my sparkle, I'm sleepy and I gain weight. Life seems to slow right down; I sleep, eat and move only when necessary. Life simply becomes a long, slow pause and there are times when even breathing becomes a conscious task. Thankfully, for most of the time, the voices and I coexist peacefully and I've managed without the need for medication.

Overall, I don't consider voice hearing and hearing my own thoughts as a blessing, nor do I see it as a curse. It simply is. It's part of who I am; as much a part of me as breathing in and out. 

 

Another absence explained

Once again, I'm starting a blog post with apologies for leaving it so long since I wrote. Once you read why, I think you'll understand.

Back in June, I made two attempts on my own life. I won't go into detail here, except to say I was hearing voices at the time, urging me to take extreme risks with my health. Fortunately on both occasions, I told somebody what I'd done and was persuaded to get medical attention. After the second attempt, I spent three weeks on an acute psychiatric ward. This was a difficult experience for me, for a host of reasons; particularly the lack of privacy, since initially I was being observed every 15 minutes.

Despite the difficulties I had in adjusting to hospital life, it was made more bearable by lovely visits from family and friends, some fantastic staff and some amazing fellow patients. I was well looked after, on the whole.

I'm now on medication but more significantly (for me personally), my weekly psychotherapy sessions have started again, so I can work on those inner demons.

My only wish is that I'd reached out and got help before I got to where I did. I was in such a place where I felt I couldn't talk to anyone about how I was feeling, neither loved ones nor, say, Samaritans. I can only hope that if I ever, ever feel that way again (which I hope I don't, obviously), I'll ask for help. I've spoken before about not being embarrassed to discuss our mental health, so it's time I took my own advice. Don't be shy, speak out.

Best wishes to all, thanks for reading.

Oneirataxia

Oneirataxia - the inability to distinguish between dreams and reality.

Someone asked me the other day, "what's it like to have psychosis?" I was momentarily stumped. The thing is, my psychotic experiences surely won't be the same as anyone else's. They might fall into the same broad categories - hallucinations, unusual beliefs, voice hearing, but the actual content will be unique because it's coming from inside my head. (Let's not muddy the waters by saying I don't necessarily realise it's coming from inside my head at the time...!)

The best way I can describe my psychotic experiences is to say they're a bit like dreaming, only I'm awake. Things can appear quite ordinary, until all of a sudden, they don't. I can be walking down my road and see someone lying on the pavement. I raise my foot to step over them but they disappear (making me look a bit odd). My kettle once sprouted wings. My shower spewed out worms. Some of the things I see and hear are extremely disturbing - I won't write about them in detail here but they often involve death and decay. Other times, they're quite mundane (the dog which appeared and promptly disappeared). Many of my experiences are visual, but sometimes it can be a smell - usually a bad one. Occasionally I hear voices. Sometimes they're indistinct and far away, as though next door have got their radio on. Other times they're as clear as if someone is standing right next to me, talking straight into my ear hole. They say all kinds of things, from the mundane to the terrifying. Sometimes they speak in languages I don't understand and can't even identify.

Personally, I see my own psychotic experiences as part of an extreme stress response, but whilst I accept they're part of the wealth of human experience, to me they're often unwelcome and intrusive. That's why, right now, I choose to take medication to help with these symptoms. That's my informed choice, for now, though I respect the rights of others to choose something different. One thing's for sure - it's quite an experience.

A to Z?

I thought I was doing pretty well, recovery wise. Actually, I take that back, I WAS doing well with my recovery. And then...

I started feeling as though someone was following me. There was a dark shadow at my shoulder, which disappeared whenever I turned around. Then the voices started. Sometimes a mundane kind of commentary, "she's making a cup of tea," sometimes hostile "fat bitch, you need to lose some weight." Or worse.

I started seeing the world through a kaleidoscope of colour. Shifting shapes before my eyes, changing shade rapidly. Then I noticed a smell. A bad smell, rotting, like bins left out in the hot sun. It followed me around, so I reasoned I myself must be the source of the smell. I started bathing and showering multiple times during the day, changing my clothes. Nothing would shift the stench. I had butterflies in my stomach almost permanently. I began to believe I was host to a colony of parasitic worms and that I was rotting from the inside. I could feel them shifting around under the skin of my abdomen -  that was the source of the butterflies in my stomach. I borrowed my husband's electric drill and told him I was going to drill a hole in my stomach to get the worms out. Luckily for me, he relieved me of the drill, put it in the shed and hid the key. I was quickly taken on  by the home treatment team.

I began to believe that if I took all my medication at once, I'd be well again. I had quite a stash - anti psychotics, anti depressants, mood stabilisers, diazepam and zopiclone. A cocktail of almost- certain demise if taken all at once. I casually mentioned my plan to the CPN from the home treatment team. I had no reservations about sharing my plan because I thought it the most logical solution in the world. He made arrangements for my medication to be dispensed daily, so I didn't have so many meds at my disposal.

The psychiatrist changed the dose of my anti psychotic and recommended I continue to be seen by the home treatment team. And that's where I am right now, battling with the interface between reality and unreality and trying to challenge unusual beliefs with logic and 'common sense.'

I realise that recovery isn't a linear process, A to Z in simple steps. The way I see this is I've wandered down a blind alley by mistake and have to work out how to get out of it. A diversion, if you like. I'm really looking forward to getting back onto the road.

Post Christmas blues

It's been a while since I updated my blog and I thought it was about time I wrote something.

Things haven't been good for me recently. On the positive side, I enjoyed a family holiday to Cumbria over Christmas. On the negative, it was whilst I was away that my mental health collapsed again. I'm attending day hospital at the moment because I'm not well enough to be alone at home. It's more manageable than being a psychiatric inpatient but it's still pretty intense and has caused some disruption to family life and our usual routine. We're coping with help from family, mainly in relation to the boys. I'm grateful to them for stepping in, even though I feel guilty that I'm not well enough to do much parenting.

Life isn't much fun for me at the moment but I'm hoping things will improve as we head towards the spring. Going back to work is a long way off, both in terms of time (I'm not due back until September) but also in relation to how well I am. I'm looking forward to being well enough to think again though.

It's a funny thing, mental health. When you're in a good place with it, you sort of take it for granted and expect it to continue serving you well. When you're in a bad place with it, you'd give anything to feel as 'good' as you felt on your bad days when you were well!

I'm feeling optimistic today. Being at hospital is definitely helping. The nurses are lovely and I'm impressed by the way the mental health team have put together a package of support for me. They phone me when I'm at home to check that I'm ok and coping. I think I'll be there another fortnight or so, then discharged to the community team. I haven't been around much on social media so I'll take this opportunity to wish you all a happy new year! Xxxxx

Hello? Is anybody there?

I had an interesting conversation yesterday with someone from the mental health trust about some of my stranger mental episodes, the ones where I feel completely separated from myself and my own life. Sometimes it's as though I'm observing the world through a pane of glass. I often feel completely disconnected, have no feelings at all, neither good nor bad, and I can even start to feel as though I'm unreal and my life is unreal. It can be quite distressing at times and it definitely creates a certain amount of distance between me and the people I care about. Anyway, I've now been given a name for these experiences - they come under the broad heading of "dissociation."

Dissociation is a form of psychological defence that has been called "the escape when there is no escape." I'm simplifying here but it's seen as the brain's attempt to protect the person from unpleasant experiences -  events that are so traumatic they can't be processed and instead are 'pushed away,' denied and compartmentalised. Used as a buffer against trauma, this protects the person from an unpleasant reality they'd rather not face. Unfortunately, over time, the process can start to take on something of a life of its own and the person can continue to dissociate even during non-traumatic experiences, thus interfering with their ability to be fully present within their own life.

There are many forms of dissociation, ranging from day-to-day experiences that most of us are familiar with, such as making a familiar car journey then not remembering how we got to where we were going, or getting lost in a good book; to full blown identity splits in dissociative identity disorder (the more recent name for what used to be called multiple personality disorder). Clinically- significant dissociation is believed to be an over-zealous defence against stress, but whereas in most people the dissociation is transient and reversible, in some people it has longer-lasting effects.

Dissociation can sometimes be a symptom of an underlying mental health issue such as bipolar disorder, but it can also exist as a standalone issue. Specifically, I experience what's known as depersonalisation and derealisation, as well as a good bit of identity confusion. Go me! Intriguingly, it's linked to migraines - something I get a lot of - and epilepsy too, so it appears there may be a neurological connection.

From my point of view, I'm thankful it's recognised as an actual 'thing' and is not simply a case of my wayward brain acting up. I can see how it's a learned response to stress - in an attempt to protect me from psychic difficulty, my brain holds things at arms length to the extent I feel separated and remote from my own life and even start to question what's real. I'm comforted by the knowledge that it's an exaggerated version of what most people experience. Personally I don't see it in terms of illness; I see it more as an adaptation that was once useful but has now become unhelpful.

I'm intrigued about the extent to which dissociation might be related to having a good imagination because it's common for children to dip in and out of "real life" and retreat to what's inside their heads. And not just children, we all indulge in a little daydreaming here and there. Maybe some of us are a little more reluctant than others to return to the real world? It obviously serves a purpose otherwise it wouldn't stick around but I'm finding it troubling and distracting so I'm hoping I can tackle it (along with a host of other stuff) in therapy.

Some thoughts on mental health services

As you know, I've begun the data collection phase of my research and I wanted to write a little about a consistent theme that's emerging. It's to do with expectations versus reality when it comes to mental health care. What I'm seeing is a real sense of disillusionment among many people who enter the secondary mental health system (that is, they're referred by their GP to a community mental health team or CMHT). For some people, unless they are hospitalised, it seems that 'care' equals medication and a brief chat once every couple of months with a psychiatrist. Possibly a brief intervention with CBT. If someone is deemed to be in greater need, they might receive some nursing support from a CPN or get to see another mental health professional, such as a psychologist or an occupational therapist. In some cases, a mental health social worker might be involved, often to co-ordinate practical matters (such as to do with caring for children, dealing with housing problems and so on). But for many people, the story seems to be that they are given medication and then feel as though they are 'parked' on drugs, with very little ongoing support, other than being advised to see their GP in between psychiatry appointments. In a sense, this mirrors the experience of physical health problems -  if you're 'well' enough not to be in hospital, then you're sent home to get on with things and advised to see your GP if you have any problems.The difficulty with mental health is that all too often, the problem ('illness' if you prefer to see it as such) tends to have its origins in the complexity and difficulties of life, so in sending people right back into that life, unchanged save for medication, how can they ever hope to get well?

If a person's problems lie in relationship breakdown, difficulties in coping with being a lone parent, anxiety around housing and money worries, or they have a background of abuse and neglect, multiple trauma and losses (some people are managing all these things and more), then how can medication with nothing else help? It's a fundamental problem in mental health and one to which I don't pretend to have easy answers. I realise that the remit of the NHS is not to extend itself into people's private lives but it strikes me that just medicating people and leaving them to it is only storing up problems for later -  whereas some may recover or their circumstances improve, others will become 'revolving door' patients.

What has struck me during the course of my work so far is the disappointment that people feel when they realise that for some, diagnosis and medication is as good as it gets. Perhaps the disappointment lies in the belief that the mental health services can, and sometimes do, offer more. As one person pointed out, in some cases, people simply don't receive any 'care.' Services are patchy and all too often, it depends on where you live, which CMHT you're referred to, which consultant you're under and so on. Only a minority are referred for NHS psychotherapy and speaking from experience as a patient, you have to jump through a lot of hoops to get that, it's not routinely available. But when you're unwell, do you really want to have to jump through hoops? For those who are very unwell, it may be impossible.

I realise that in-depth psychotherapy may not be everyone's taste; it involves a long term time commitment, for a start. But the CBT offering that was promised to transform the lives of many has proved disappointing. Again, some individual therapists are brilliant but others rely too heavily on the manual and ignore the real person sitting across from them. Many people are deemed unsuitable for IAPT on the basis they have more complex needs (I was one of those people). So what do they get? In my case, it'll be psychotherapy but as I've mentioned,for a variety of reasons, that isn't an option for everyone.

Some people say they need help with emotional problems, others need more practical support to help them get on with their lives. If it's not the remit of the NHS to act as a counselling or advisory service, or to do the work of social care,who fulfils those roles in our increasingly atomised society? The voluntary sector is already overstretched, with many services affected by cuts and needing to scale back (that's where they aren't having to close down altogether). NHS mental health services are organised in such a way as to discourage 'dependency, ' but the question is where else can people turn when there is genuine need? 

It seems that there's a gap between expectations and reality when it comes to mental health services and what you get is whatever's available, which is, in some areas, not a lot. A diagnosis, a prescription and told to see your GP in case of any problems, now go away and get better. It's nowhere near enough. 

My problem is not your problem

Having a mental health problem is a bit like being pregnant; people just love to appropriate your experience. Sometimes people talk about what’s happened to them as a means of showing solidarity, which I quite like, as long as it’s not assumed that my experience will automatically be the same. Unfortunately though, all too often this spills over into advice-giving. Oh yes *rolls eyes* people just love to offer their wisdom, whether or not it’s asked for. There’s often an agenda, whether the person realises it or not. Sometimes the agenda is explicit – “you know, things would work out so much better for you if you just…”or “if you try (whatever it is they happen to believe works).” That kind of thing. Unsurprisingly, I have a few things to say on this subject. Firstly, unsolicited ‘advice’ is unwelcome because, well, it’s unsolicited. If I want advice, I’ll ask for it, thank you very much. To assume I am in need of help or advice feels patronising, as though you don’t have confidence in my abilities to source the right kind of help or do what works for me. For all the other person knows, I might be doing it already, have already tried and rejected that approach or simply have enough ideas of my own, thanks. Such ‘helpful’ interventions assume all manner of things that the self-appointed advisor probably doesn’t know, but most importantly, it makes me ask “whose mental health is this?” Because last time I looked, it was mine. More than one ‘helpful’ person has asked me what medication I’m on, or what dose. And they have the temerity to act all offended when I tell them that’s my business. I know it’s well-meaning and I know you “just want to help,” but rather than impose your ideas on others, why not ask “is there anything I can do to help?” Or maybe, you know, offer your services as a listener. The details of my life are not up for discussion unless I choose to make them so. Just because something worked for you doesn’t mean it’ll work for me, or that I necessarily want to try it. I don’t need to be rescued; all I ask is that people be there for me if I need them and maybe just check how I’m getting on from time to time. If I want to talk, I will.

Another research plug

http://www.volition.org.uk/audible-thoughts-research-project-mental-health/

Research website

If you are 18+ with lived experience of the NHS mental health system, please consider taking part in my research. Further details and instructions about taking part can be found here
audiblethoughts.org.uk

Measuring what shouldn't be measured

Apparently there’s been another one of those “prodigiously clever children” programmes on TV recently. I didn’t watch it, but I watched the Channel 4 version earlier in the year, in which a number of mini-geniuses were pitted against one another in a sort of intellectual Olympics. This created an interesting jumping off point for me to write about our obsession with measuring things. In my opinion you see, intelligence can't really be tested. How can it be, when we can't even agree on what it is? Even in academic psychology, where they love devising creative ways to measure human diversity, the tests have been largely discredited. The tests measure ability to complete the tests and that's about it. They are still carried out, but it's with the resigned acceptance that for all their flaws, they are still the only measure we have.  Which is fine, as it goes, but it's a bit like being a champion crossword solver - great if you enjoy that kind of thing and do it for fun but otherwise, so what? 

What was interesting to me was the reaction from the viewing public. I remember that Twitter went into overdrive at the time, discussing whether it’s OK to encourage children to jump through these kind of hoops. Questions were raised about whose agenda was being advanced by such events - the belief that it’s really ‘all about the parents’ was very common, leading to the inevitable accusations of pushy parenting.      

The parents featured in the programme might say that this is rather unfair; after all, those who encourage their kids in the arts, sport or music don't get anything like that kind of criticism. And in a way, that's true; those who spend many an hour at the side of a football field, athletics track, dancing class or swimming pool are rarely accused of effectively abusing their kids, so why the parents of clever kids? I think the programme title "Child Genius" doesn't exactly help, but I think the problem runs deeper than the idea that someone else has really clever children, I think it's the suspicion of coercion. Many people find it hard to imagine that anyone, least of all children, would do those things for fun. Anyone with a small child will know how hard it is to get a kid to do anything they don't want to (extending to 'getting dressed' sometimes, in our house), so I'd imagine much of the 'coercion' is about creating a climate in which these things are valued, a view which ultimately comes to be adopted by the children too. Abusive? I wouldn't say so, but I do think there's a fine line between supporting a child in their interests and colonising their life with your own. At the more extreme end of the spectrum are the experiences of certain well-known examples, such as tennis player Andre Agassi. He famously had a tennis ball mobile above his cot as a baby and a tennis racket strapped to his wrist at the age of three. His autobiography reveals a heartbreakingly sad early life, he was pushed beyond what most people would consider reasonable, was extremely unhappy and even at the peak of his success, hated tennis. It made me wonder whether people believe that the ends justify the means when someone excels?    

Back to our obsession with measuring things, I probably underestimated our obsession with “measuring stuff” (including people). And of course, it’s extremely flattering for you or your child to be painted in a favourable light - I’ve yet to hear anyone boast that their level of intelligence is ‘distinctly average.’ What puzzles me more though is the idea of personality tests. I’m a bit puzzled by the idea that personality is a) a thing and b) that it can be tested. I don’t actually believe that personality exists. I know we all use that word to describe ‘how somebody is,’ a kind of linguistic shorthand but personally, I think who we are is mutable to the point where it’s impossible to say that anyone has a personality at all. I think we are internally numerous and that ‘who we are’ is created as we go about the business of our lives – the self being constantly redrawn and recreated in the light of different experiences. I agree that there will be some fairly constant themes (usually created by our upbringing and the processes of socialisation), but much of it is an active work in progress. The beauty of this approach is that it leaves the door open for us to change those ways, if we choose to. And this is a highly significant point for me. It’s much harder to change a ‘personality’ because when it comes right down to it, you are who you are. If you apply this line of thinking to the growth in diagnoses of ‘personality disorders,’ you can see that if a person believes their behaviour is shaped by ‘personality,’ (which can’t be changed) then they may see themselves as a lost cause. Unfortunately, this view dominates thinking in mental health - research has shown that people with certain personality disorders are discriminated against in terms of treatment. I believe that the vast majority of people can be helped to better understand how and who they are, to explore the ways they are in the world have been helpful (or not) and maybe think about how they might do things differently. It just goes to show that measurement can have unintended consequences.

Worrying about worrying

My experience of ‘going mad’ was the result of me mentally fending off the prospect of the physical demise of my own children, who, I have been told, will need kidney transplants before age 20. My imagined view of their young lives vanished overnight and into my consciousness came things like renal diets, dialysis, the hope that a kidney donor would be found, anxiety that their Dad can only donate to one of the boys (assuming he’s a match for either, which we don’t yet know). I had fears about operations, the damage that renal failure can do to a body, worries that their young lives – by then surely on the cusp of adulthood – wouldn’t be what I imagined. I worried about all sorts of things; immediate issues like their deafness, to more distant but important things, like their education, social lives, being in kidney failure whilst at high school and of course, dialysis and transplantation. I worried about the fact they each probably need more than one transplant during their lives and I worried about the fact they won’t be a priority for donor organs once they reach adulthood. I worried their illness will impact on their plans to travel, their work prospects and their relationships. I worried about their sense of self, how they'll make sense of who they are as people with a rare illness. Overall, I worried because they are too young to fully understand what’s happening and thankfully they aren’t worried for themselves because they don’t feel ill. In short, it was all too much. My hopes for my children were scooped up, shaken about and scattered into the wind. They haven’t vanished, but they’ve been dispersed. Despite all this, I haven’t felt sad and I haven’t cried once. Is it possible to be in shock for several months? 

People kept telling me not to worry, not to be anxious about a future that hasn’t even happened yet. “The future will take care of itself, just focus on the here and now,” people said. Great advice, I’m sure. But firstly, what I’ve been worrying about isn’t some abstract possibility; my boys’ kidneys will fail, it’s not a case of if, it’s when. The manner of it and how it'll happen is unknown but the reality is, it will.  Secondly, telling someone like me not to worry is like telling a seal they can’t swim and instead they should flop about on dry land all the time; worrying is what seasoned worriers do. When we aren’t worrying about something, we feel odd, alien. I’ve been a worrier all my life. If there were medals for worry and plaudits for anxiety, I’d have won them all. I worry about worrying. And I do it all silently, inwardly. Partly it’s because people say unhelpful things like “don’t worry” (uncharitably, I suspect this is more for their own benefit than mine, because they want to be able to make everything all right) but also because privately, I feel ashamed about worrying. I don’t like it and I don’t want to inflict my boring concerns on others. I also feel I don’t deserve to be anxious, because others have it so much worse. (And it’s true, they do, but that’s not to say my life has been a picnic lately either). Incidentally, I dislike the term ‘worry’ when others use it about my circumstances, because I think it trivialises horrible, gnawing, ever-present fears. But yes, I'm a big time worrier and given something this big, it just sent me over the edge of a cliff.

I feel very sorry for the people who had to witness it. They saw my fragmentation, paranoia, fear and confusion first hand. My words and actions were so idiosyncratic (and at odds with the person they know) that they made no sense. For me, I found that the everyday parts of my life became the backdrop to a drama played out in a private, nightmarish landscape. It was a horrible time and so I'm thankful that I'm now well enough to write about it. I daresay this might seem like a terribly boring, self indulgent post but to me it's important. So thank you for reading what I've written.     

Everyone is a story

Health stories form part of our cultural landscape. We’ve all heard the tale of the Great Uncle who smoked 60 a day and lived to be 90 years old. It’s not always clear exactly whose uncle he was, but still, it's a great story! Families have these stories too, such as the time a relative absconded from hospital just before an operation, walking home in his dressing gown (this one is completely true, it was my Dad, but thankfully the operation was only a minor one!) There are mental health stories too and that's what my research is about.

We know that telling stories (narratives, in academic lingo) is an important way of making sense of the things that happen to us. They also tell us who we are. We are re-imagined in stories, a range of possible selves is within reach. Jerome Bruner said they’re often told when something important happens in or lives; it might be a danger or a challenge, or it might be something positive but we don’t tend to tell stories in which nothing happens. What’s interesting is that it’s not just a case of “stuff happens then we talk about it,” we actually use stories as a way to understand our experiences. So, in telling the story, we are also making sense of life events and ourselves. The plot will alter according to personal circumstances, mood, previous experiences and it will also be shaped by culture, family traditions and so on. A story can be told as a way to help us understand what’s happened, but each event could be 'storied' in a number of different ways. In this way, our experiences are something to be discovered, rather than concrete entities with one ‘official’ interpretation.   

My research work involves hearing people’s stories about their mental health. I’m no stranger to this; as a counsellor, I've listened to literally hundreds of life stories. At various times, I've been saddened, inspired, motivated, enlightened and entertained by what people had to say. I was already aware of the therapeutic value of story-telling and being heard and knew that the telling of a story could aid someone making sense of things. I acknowledged that the stories I was hearing might be rather different to the ones being told elsewhere in that person’s life; such was the privilege of doing therapeutic work. 

I also knew that often, someone would have pre-existing ‘stories’ in their mind, so their more recent experiences would take their place alongside the old. When someone has a number of pre-existing stories, they are liable to repeat old patterns because they make such intuitive sense; it’s just “how it is” for that person. As such, they can find themselves doing things that aren't always in their best interests. Part of the business of therapeutic work is to understand and possibly challenge these old stories by asking (in a variety of ways) "how’s this way of seeing your experiences working out?" And the response to these questions will vary, according to a person’s ability and willingness to introspect. It’s a difficult task to witness someone continuing with a pattern of behaviour that doesn’t exactly help them, but by asking the questions, the person is free to follow it up, if and when they want to. 

My research is, in a way, a continuation of this hearing people's stories. My task is to collect lots of stories (data) and put them together to create a kind of ‘collage’ of experiences. I'll then be providing some commentary, with a few psychoanalytic insights. It's more a mosaic than a collage, but my preferred way to describe it would be to say it's a bit like a kaleidoscope. A mosaic implies that the pattern is ‘fixed,’ whereas to me, human experience is anything but static. Just because we might think we see / think/ understand something now, it won’t necessarily look that way in a fortnight, or a couple of months' time. I want to reflect something of the dynamism of human lives in my work. Unfortunately I won;t be able to witness people's understanding evolve but I can take a snapshot of where they were at a given point in time and (hopefully) say something interesting about that. Just as it was when I did therapeutic work, it'll be such a privilege and I'm really looking forward to being part of it.