A PERSONAL VIEW OF TAKING PSYCHIATRIC MEDICATION

SCOTTISH PHARMACISTS IN MENTAL HEALTH

BIANNUAL MEETING.

A PERSONAL VIEW OF TAKING PSYCHIATRIC MEDICATION OVER THE LAST THREE DECADES – WHY I RESIST IT? HOW IT AFFECTS ME? WHY I MAY NEED COMPELLED TO TAKE IT? HOW I HAVE BEEN SUPPORTED TO TAKE DECISIONS ABOUT IT

GRAHAM MORGAN

19 MAY 2022

Hello everyone

A very quick introduction.

My name is Graham Morgan. I work for the Mental Welfare Commission for Scotland as an engagement worker. I have worked in the mental health field for over thirty years, mainly as someone helping give voice to the community of people with a mental illness and mainly in advocacy groups in the Highlands and Lothian.

I am 59, I live with Wendy and her twins, James and Charlotte, in Argyll with Dash the dog and the Bon Bon and Pumpkin the rabbits. I have had a pretty fantastic life for the last few years but I have also been compulsorily treated under the Compulsory Treatment Order for the last 12 years as I have a diagnosis of Schizophrenia and do not willingly take the

medication people feel keeps me well.

There is so much of my life I would like to tell you about but there are two points that I will mention –one is that I am an author and will be illustrating some of the points I make from my memoir START and also from my forthcoming book; Blackbird Singing. The other is that although many people do think that in some areas of my life my judgement is significantly impaired, in much of it I am as well informed and able to reason as most other people. I am the joint vice chair of the Scottish review into mental health legislation and have had pieces published in academic journals as well as more mainstream mental health magazines.

The reason I said the last bit is I remember producing a report when I worked in Highland many years ago, on the views of people like me on medication – some of the themes people raised were that they resisted medication because they wanted to be real and they wanted not to be controlled by other people. I remember a brilliant pharmacist saying that some of these comments were evidence of mental illness on the part of the participants – and that is both true and untrue – I would urge you to look at the reasoning behind the comments that we sometimes feel inclined to dismiss.

I am going to spend about 30 minutes talking and do hope it is interesting enough for you to find it worth listening to.

I am going to cover:

· My personal feelings about medication and my thoughts on why some people tend to resist psychotropic medications

· My experience of anti psychotics

· My experience of being compelled to take a medication I do not think I want to take

· The support I have been offered by pharmacists on medication and some of my thoughts on why I do not tend to seek information on it.

Hopefully you will find this fascinating and we will have an interesting discussion afterwards!!!!

So to start with here is a chapter on medication which appears in START:

SEEKING THE BIG UNTRUTH

I cannot even remember all the different types of medication I have taken over the years. I have almost never taken a medication and had that sense of relief, that feeling of, now I will be ok. Even when I have, I have never wanted it and I do not know why.

I find myself thinking, wondering why so many people hate medication, why people react with that instinctive, ‘I don’t want medication.’

Why is that? If I had typhoid I wouldn’t say, ‘I hate these pharmaceutical companies. I hate the thought that this medication makes me better. I will resist that pill till the last moment.’

Over the last wee while, I have been bumping into people who say that their

antidepressants, their anti-anxiolitics are lifesavers; how the daily dose of a wee pill keeps them safe, keeps them stable, how they have no need of psychotherapy, no need to immerse themselves in the detritus of the past or the complexity of the future. I see people who say, ‘I have an illness. I take a pill, it keeps me well. I am not addicted to it but I do dread the day that the doctor will try to take me off it.’

And I feel some sympathy, some shock, that we have made almost everyone resistant to taking pills that might keep them well.

‘Pharma’ is an easy target, a lovely place for the angry to take aim, and sometimes with great justification. Pharmaceutical companies do make huge profits, they have done questionable things. They do have great power, they do distort the world of our therapy and the therapy they offer is something that can ruin our lives, but on the other hand, even though the radicals amongst us try to make the case that drugs have no effect at all, other than damage, those drugs seem to give a life to millions of people who would not have that life without that wee cup and the swill of water to shake the pills down.

I still don’t really know why I hate medication, why I wish I didn’t take it. But sometimes I worry that the only reason I feel this is because I am supposed to feel this, because I have been told to feel this.

So why do I hate drugs?

I would like to say I hate drugs because they dull me, they make my life hard to live. I would like to say it is because, when I was taking the injections of Depixol, I always had to walk in circles, to pace the kitchen with that internal restlessness, or because, when I was on Olanzapine, I put on weight and felt that little bit subdued or maybe, when I take Risperdal, I am conscious that it has an effect on my sex drive, that I seemed to develop man boobs, that maybe the fact that I am on the verge of being diabetic is not just a result of lifestyle but a consequence of the medication.

Maybe I would like to say it is because when I take sleeping pills like Zopiclone, I zone out, feel weird, or when I take things like Diazepam or Lorazapam, I feel that temptation to always be in that warm slurry of softness where my feet and legs stop shivering and I cease to worry.

Maybe it was the indignity of hitching my trousers down every two weeks for the jag in my bum from a stranger, or maybe it is because I know exactly what the new jag in my arm will feel like. I know how the different nurses will greet me. I know which nurse will push the needle in so slowly that my muscle clenches and I feel pain or which one will spear me with a quick jab I almost never feel and then say that I don’t need a plaster so that now all my favourite shirts have a stain at the shoulder.

I have asked our members in HUG (the group I work with) why they don’t like medication and some of their views do chime with mine.

I don’t like to feel controlled, I don’t like being told what to do. I don’t like, above all, to be seen as defective and needing mended. I don’t like the implication that if I take medication, I have to admit that there is something wrong with me.

I hate the thought that by taking medication I agree I have an illness. I hate the thought that if I take medication I don’t know who I am, that I am masking the real me with the drugs that make me different and acceptable.

I hate the fact that by accepting my medication I accept that your view is the right one and mine a petty delusion. I hate the fact that you are right and I am wrong. I hate that now I have seen my notes and the research into my notes that I have to agree I have schizophrenia when I still know this is a mistake; that if ever there is a test for it, when I am tested doctors will say, ‘Why no, that is not what he had!’

And I hate the fact that I am anxious about what they might decide I am instead. However, mostly, I hate medication because I am expected to hate medication.

I also hate medication because I know somewhere deep in me, or so I hope to dare to hope, one impossible day I will realise that I am not the devil, that I am not going to bring the world to an end, that if I am incredibly lucky I will be free from this dread and a part of me is terrified of this.

Can I really sit down and say I have lived a life where I know I am the very worst person imaginable? Can I say that and then say, but now that I take medication, however unwillingly, that this thought, fact, belief, reality is uncertain? This bedrock is a quicksand of my own making that has not only dragged me down, but those I love down too? Can I really face up to the fact that I have based my life on a complete untruth – isn’t that what taking medication would acknowledge?

And yet I pause. I want to be real, I want to be what I really am, not this fake person and yet I cannot face the real me. I cannot confront this. For me, not taking medication might liberate me and make me real and yet for those around me it would throw me into illness and possible death.

Medication is confusing but I know it keeps many people alive and sane. I think it might do that to me. I also think that it has destroyed countless lives too. I think it is something with a value base we have not really explained to ourselves or each other, except via the soundbites of idealogy.

Thank you for listening to that I hope it was interesting but would say that I am good at changing my mind about things and may have different views now.

So the next topic.

The bare bones of my experience of antipsychotics.

I was 28 when I first went onto anti psychotics, some of my experiences from then are maybe less relevant today but do remember that they do inevitably influence my views today and others will have had similar experiences.

When I was in hospital not long after my son was born, I was in distress and bewildered and very confused and very frightened and ignorant of medication and psychiatry . This was in the world where we used largactil and haloperidol a lot .

I don’t have much to say except that I was on 1000 milligrams of largactil and on a prn of haloperidol for those moments the nurses felt I needed it. I did not think I had any choice other than to take my medication but did not at the time, know I was on a section.

The largactil made it almost impossible to think – I remember my brain was so slow – it took me ages to find a reply to questions that staff asked me – I also remember getting terrible sunburn and the worst constipation I have ever experienced but not being warned about it. The haloperidol came in liquid form and when I took it, it felt like treacle was being poured over my brain – I really hated it.

Fast forward to a time when my brother, who is a psychiatrist, suggested I try Abilify as it seemed to be having a wonderful effect on some people and at first it did. I gained energy and spontaneity. Life became wonderful. I remember, one lovely day, sitting with my ex wife in the doctor’s office with her saying to him that this was fantastic; that she had had me as a stranger in her life for at least the last 15 years and that now she had the real me back in her life and that that was incredible; she had the person she first fell in love with, in her life again.

But the energy I gained meant that I stopped sleeping and as the weeks passed my world changed.

I tried going on the abilify twice, the second time with lots of support and diazepam to calm me down but each time I ended up in hospital on a section before being put onto Olanzapine again.

I am now on respiradal consta and this is where I talk of my most confused feelings and perceptions. I am going to read a short section of a longer chapter from my new book now and maybe it will give some inkling of what I am talking about:

‘What is normal:

…I am not at all comfortable with my memories. Of my devastated marriage, my son I no longer see, my scars, my times on constant observations, learning I was frightening my neighbour’s children with my behaviour.

I don’t care if this is not of my making, that this is an illness that I cannot control and shouldn’t be blamed for, it is still a part of me; a bit of who I am.

When my partner begs me to speak because I have no words and spend most of my time at

home almost mute, because the pretence of charm I have at work is too painful and exhausting to carry on at home or, when I am in company, I smile fit to burst but haven’t a clue how to join in the conversation. I flush with the shame at what people think of awkward, inarticulate me.

It is all very well to say we need to accept and live with difference, but look at the last couple of weeks. For those two weeks I have had the best time in years; somehow that echo chamber where I have no emotion, where my life is more a smear of a life than something real, where my gaze is blurred and my imagination crawls at such a pace that I cannot connect with the vibrancy of those around me; that went. For days I have been connected with myself and my emotions. Being unreal, dead almost, has fallen from me.

Why! One day I found myself gargling a tune in a game with the children and laughed so much I spluttered water all over the table and, to my astonishment, realised that this was the first time in I don’t know how many years, that I had laughed in such a way that I was really laughing instead of going through the motions.

It breaks my heart that that has been my life and that I have not been able to be in the way I wish I could have been for all those I love.

I feel so much for those I love and who somehow love me, that, for most of the time, they are dealing with a facsimile of me and when they aren’t, they are dealing with someone with bewildering beliefs that could lead to my death and the untold trauma that would do to the children.

This is something to accept? To be proud of? This is the bright reality of the “What is normal?” postcards?’

…..

This is in some ways at the core of my worries about medication when we deal with just the side effects.

I read a book on psychosis by Nathan Filer a year ago and although I already had a good knowledge of what he wrote; his chapter on medication really woke me up to question my treatment.

As you can see from the reading I just gave, I spend a lot of my time in a place I cannot really express

– a cotton wool, locked away bleary place, a place where I feel as though I live at one remove from the world; where my emotions are not my emotions, where I do not spontaneously do anything; where if I laugh it doesn’t connect to me – it is a dull grey horrific world that most people do not see when they encounter me in real life.

– I can hardly remember a time when it was different and yet I have enough memory to remember times when it has indeed been different, where the world was bright and colourful; where you felt you could touch the joy around you and where red was really red and green lushly green.

I would do almost anything I could to not experience that grey dull uncertain world and find this constant dismalness far, far, worse than times when I am busy talking of devils and rays of malevolent energy all around me.

Sometimes I think that if this is to continue to be my life; that life really will not be worth living despite the wonderful people I have around me.

For a long time people have told me that these are the negative symptoms of schizophrenia or signs of depression and I have sort of accepted this but now the thought that my anti psychotics could also contribute to this dismays me – that people are making me take a medication that makes life terrible; how could they do that?

I ask my CPN and my doctor and they have no answer. They say it could be my medication that does this to me but that the alternative without it would be even worse and that seems so utterly sad and dismal; gives rise to a self pity I am usually unaware of.

This brings me onto my compulsory treatment. I cannot deal with this as I would wish in the time I need. Every two years after my tribunal confirms my section I am meant to see a designated medical practitioner to decide on my medication use.

The last one I saw was wonderful because she just got what I said immediately. I said that I was intelligent enough to know I probably did have schizophrenia and intelligent enough to recognise that when I stop medication I end up in hospital but that despite this rational understanding, my heart will not acknowledge this.

My heart says I am not really me on medication and that I do not have an illness, or if it does, it is just depression, that instead medication makes me a pastiche of me.

The horrible bit is that I think the real me is what everyone says is my delusion – that I am a devil amongst a network of devils and that we are busy bringing about the last days of the world. That I am partly responsible for global warming, for covid, for Syria and flooding and burning forests and Ukraine and the different tragedies many of my loved ones have experienced. I tend to say that medication stops me facing just how bad a person or thing I really am and that I need to take responsibility for this by stopping taking it.

This is with the knowledge that as I realise how truly terrible I am as the effects of medication wear off that I will be increasingly likely to attempt suicide to save the world from what I do to it.

It is quite hard just writing that and I need to temper it – in many ways I am grateful to the people around me who make me take medication against my will.

– because I know that it might give me the wonderful life I have.

I live with my wonderful very funny and very loving new family. I have enough money. I have a job and not only a job but one that seems to have a purpose and a value. I walk every day in the wind and the rain and the sunshine looking at the seals and herons, the geese and the curlews of Ardmore point. I am astonished that after what has sometimes been a very harsh life, that I am busy living and not only living but experiencing things I never dreamt could be as good as this.

Life is complicated indeed. As you have heard, some of my reasons for resisting medication are in many people’s opinion, an illustration of how I can’t think straight and need someone to intervene to keep me and others safe but some of them – they are much the same thoughts and feelings any one of you would have. I have revealed some thoughts that would be alien to you but is all my unhappiness at medication unjustified and not something you would think if you had been on medication like this for the last three decades ? I would imagine not.

I am now on the final straight of my talk and do hope I haven’t exhausted you.

A short bit on supported decision making.

– the direction our new legislation is going in, is much more about responding to our will and preference than about what is in our best interests which confuses me as I am not really sure I know what my will and preference is and see it change all the time and even contradict itself.

However a couple of admissions to hospital ago I was told that I would have no choice but to go back on my antipsychotics – I was very, very, reluctant for many of the reasons I have just given you.

However the hospital pharmacist came to see me once a day for about a week to talk to me and listen to me talk about my thoughts on the medication.

Once I finally accepted I would have to take something; we were able to make choices. I was able to talk about my need to be alert enough to do my job and my desire not to keep on putting on weight and, over the days, I was given plain English leaflets about the different anti psychotics I could take until finally we reached a decision that I agreed with and the staff agreed with. I liked that. A simple thing but it conveyed respect for my feelings and my thoughts, my anxieties and also a willingness to listen to me even though at the time much of what I was thinking was seen as deluded and distorted.

I should finish there because it is a moment of positivity in what may have seemed an unremittingly negative talk. But I won’t.

I will talk about my community pharmacist. He is wonderful. I think I first met him outside of his job at a conference where he was very kind about a speech I gave and said he had bipolar himself. That honesty was lovely too. He greets me with a smile and by name whenever I go in to pick up my anti- depressants and makes me feel valued and respected and I know I could ask him more about my medication but I don’t and I don’t know why.

Wendy, my partner trawls medical journals for fun and seems to have stumbled on some new drugs which apparently work well around the negative symptoms of schizophrenia as well as the positive ones

I want to sit down with him and talk about it and what I would do if they had to be taken orally and willingly instead of administered by the state which is the only way I can accept it just now. But I can’t; I feel far too shy and awkward to say “I would like to know more.” which is sad I think. It also illustrates that even when you are superb at your job and spot on with your values that things get in the way to make it less than perfect, which is certainly a lesson for someone like me who is very much not perfect at his job!

I am going to stop now after this marathon of a talk and ask you to reflect on what I have said and think of any comments you would like to make; any challenges you would like to pose or questions you would like to ask?

Please do think of something otherwise we will need to think of some other way to fill the remaining time and I will get very embarrassed and have to hide after we have left the meeting!

Thanks so much

(photo: Dandelions in the gloaming of our garden May 2022)