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“It feels like I’ll never get better” was my daily reality

I spent years believing that I would not get better. I was not alone in this. After the initial emotional crisis continued into a longer term, downward spiral, I was labelled as being mentally ill. Of course, lots of people get diagnosed with ‘depression’, but when I was told I was depressed I was prescribed a drug – first an SSRI which made me feel worse. Then another drug, then ECT, then more drugs, more ECT and each time I was told it would make me feel better, it didn’t.  

When the diagnosis was changed to ‘treatment resistant depression’, I was told it was unusual – but since then, I have found an awful lot of people stuck in similar situations – all on the multiple drug treatment merry-go-round, not improving and in some cases, like it was for me, getting worse.

Now, there’s nothing more depressing than feeling depressed while simultaneously expecting to feel better but feeling worse. The trouble was that I came to believe that the reason I was not ‘responding’ to the ‘treatment’, prescribed by these very kind psychiatrists, was all down to me – there was something about ME, that stopped me from getting better. And in essence this was true. After all, MOST people given the diagnosis of ‘depression’ who take just one drug, do get on with their lives.

Meanwhile my psychiatrists persisted in trying to find the magic cure, the one drug that would finally provide the breakthrough I desperately, desperately wanted – it didn’t happen. So already feeling bad, I also assumed it must somehow be MY fault, and I was to blame when actually, nothing could be further from the truth!  ‘Ah’, they said and I heard murmurings: ‘low self-esteem’, ‘poor, vulnerable, weak character’, ‘we need to make decisions for her’, ‘we’re the experts, we know best’.  Some people actively confirmed my worst fears suggesting that I didn’t want to get better. How they worked that out is beyond me! Why would anyone want to remain miserable for the rest of their lives?

But if you are reading this and wonder about yourself or perhaps a loved one who appears to be stuck in a similar situation, then I can tell you quite honestly – it is possible to get better!

The first thing to know is that it is not your fault.

The way anyone feels is the way they feel. But I found that understanding how or why I felt a particular way was rather important to my recovery.

Prescribed drugs, being hospitalised, given ECT and even more extreme, the psychosurgery – none of these so-called treatments provided the answer for me. Having said that, it is very important if you are already taking any psychiatric drugs, not to stop any of them suddenly – because withdrawal symptoms can be severe and can even look like ‘relapse’. It is best to return to your doctor, have a discussion and ask for advice on how to taper off your prescribed psychiatric drugs emphasising the need to do this very slowly indeed.  

Back to my situation: I had been hurt in the past. I had experienced long-term emotional ‘trauma’ as a child, and when I became an adult, my coping mechanisms came with me. It was not until very much later, that I discovered how these patterns of behaviour which I had developed to survive my childhood were no longer helping me. I didn’t know that of course, and nor it seems, did anyone else during the time that I was receiving all this psychiatric attention.

There was nothing innately wrong with what I did to survive – I buried my emotion, I worked extra hard when under stress, I was very independent, I drove myself to keep going and reach my goals – but it was no longer ‘fit for purpose’ and finally I broke down.

It’s easy in retrospect to see how obvious it was, that no amount of medicine in the form of tablets, capsules, liquids and injectables could ever erase what happened to me in childhood, but more importantly, neither could it change my outlook or my responses to difficulties as an adult.

Simply put, there were no magic answers, no quick fixes and nobody else could make things right for me. My problem was that I did not know that.

I am suggesting that what I really needed was to understand exactly what was behind my very difficult, painful, tormenting feelings. Then I needed to develop a new relationship with my emotional self; I had to learn how to accept my feelings, how to learn from them and how to work with them. The whole recovery journey would have been much quicker if I had had a guide to the process.

The psychiatrist was only there to make diagnoses and offer pills. I was however, simultaneously offered psychotherapy including CBT. It came as part of the package alongside the drugs which wrapped up the terrible feelings so that I felt like a pressure cooker about to explode. CBT remains one of the most widely available talking therapies provided by the NHS and some people find it helpful. I was encouraged to use ‘thoughts’ and ‘logic’ to control how I felt – the ‘thinking’ was supposed to be ‘in charge’, supposed to determine how I felt and how I behaved. But it didn’t help either.

The sessions with the NHS psychotherapist were far from confidential, they were mandated to report me if I talked about my true feelings of suicidality. Once I was discharged from hospital, the last thing I needed was someone who had to do the ‘right thing’ and make sure that I was taken to a ‘safe place’ on a hospital ward, where I was considered ill and in need of more drugs. While it was extremely helpful to know that someone else believed in me, valued me for who I was, understood something of my torment – the therapist could not be beside me along the way. The therapist was constrained and so was I; besides which is very difficult to trust someone who is mandated to report you if you confess to what you really feel, and you fear the consequences.

The first step towards real, robust recovery came only when I understood and then acknowledged internally that psychiatry could never help me; more than that I had to conclude that nobody else could make me better. But also to realise that I was the person who knew me through and through. I was the only person who truly understood myself and I held the keys to my own recovery.  It took rather a long time to get to this point.

However, I would like to remind everyone how important it is not to tell other people that ‘no one else can help you’. I was extremely vulnerable, struggling with feelings of failure, and dangerous suicidal thoughts – to hear this from someone else’s lips would have been extremely hazardous and could provoke me to act on my thoughts. Whereas giving empathy is helpful, being validated is helpful. Being abandoned by those supposed to care is not.

Having discovered for myself that nobody in the NHS could help me, I had to then find a way back into the driving seat of my life. This meant I had to choose who to see, what to tell them and ultimately find out whether I would be safe in doing so. I felt very let down by those who were meant to help me. So naturally it was some ask to trust another person.  

But before I found a therapist who did give me that service, I discovered a few helpful things for myself

I was surprised to find that lots of other people also experience very intense emotions but are not considered mentally ill; that lots of people even hear voices or see things that aren’t there but are not considered mentally ill. I found out that some people had carried on living their lives despite similar experiences to mine without acquiring a psychiatric diagnosis. There are no physical measurement of psychiatric symptoms, no tests to determine what anyone feels is normal or what is not.

I had to let go of the suspicions I had been taught by psychiatry, to unlearn seeing my emotions as a sign of worsening illness or impending relapse.

 I learnt how emotions come and go, that their intensity varies and furthermore they can change at the drop of a hat. I learnt there are no such things as good and bad emotions – they are just emotions.

Humans evolved with feelings – our emotions are very important to our preservation as a species, but also in the here and now – our emotions are key to everything we do.

Being afraid, hurt, angry, disgusted, anxious… all keep us on the alert and safe from danger.

Being in love, feeling warm, happy, cosy… help us find our friends, our ‘mates’ and ultimately keep our species alive.

While feeling sad or depressed may not seem so obviously protective, being unhappy does inform us -whether indicative of a loss – missing something, someone, some time, some place or a reaction to intractable problems or difficult circumstances – such emotions are necessary and natural, motivate change and teach us how to feel compassionate and caring towards other people. Tears also communicate how we feel and get us the support we need. This is vital to our existence.

As I learned how natural it was to respond or react with emotion, I became less afraid of what those feelings might mean. Even though doctors had labelled them as ‘depression’ and I do not make light of the suffering associated with such severe distress, I still wished I had known more about these things years earlier.

It is very difficult to sustain the most extreme emotion for any length of time– like a flare of anger which we recognise only remains at a peak for a short period of time before it naturally dies down. I suspect this is because it uses an inordinate amount of energy through the activation of the autonomic nervous system, but I soon came to realise that a similar principle applied when I felt very extreme anguish. In the past, this sort of intense feeling drove thoughts which had led me to hurt myself and it became a vicious cycle – I discovered that ‘sitting with my feelings’, acknowledging their presence, even internally talking to them– asking why they are there now, became a helpful way to dial the intensity down a notch or two.

Sometimes, it does become necessary to DO something – maybe engage in activities like walking, talking or eating or even having a good cry could be very helpful. Sometimes intense emotions seemed doggedly persistent and this could be very exhausting. Again acknowledging this rather than trying to ‘make’ them go away paradoxically dialled it down. I taught myself to get some rest – even when I couldn’t sleep. This included finding ways to distract myself which could both turn the associated thoughts (ruminations) off, and calm the emotion down – watching light-hearted TV, writing, cooking, cleaning. It might be time to take the focus off me and deliberately pay attention to someone else and if I really needed to talk, phone a friend…

Once I found a counsellor (therapist), who I sensed could help me, I took her suggestion and put together a little box filled with things to engage all my senses – it was a strategy for those times when I thought my emotions might threaten to overwhelm me.  The box contained something to smell, to taste, to touch, to listen and to see (look at). But I never had to use it! Why? I guess by then, I hadn’t even noticed that I had already learned how to calm myself – get myself a drink, eat some chocolate, go for a stroll, look, listen, feel and smell anything I could find during the walk – get away from the situation even temporarily.  But it’s always good to find something which makes me laugh. Laughter banishes so much that feels bad.

The counsellor helped me to progress my recovery journey further; I knew it was time to look carefully at the past and find out what I needed to change so that I could live my future in the present!

I was empowered and some amazing changes took place – when I was feeling so awful during the years when I was labelled as depressed, all my memories had seemed bad and dark. I could not remember that there were also some good times even during the worst periods of my life. Now, I was able to appreciate so much more and remember even seemingly insignificant small things – like kindnesses, beauty, presents, places, play, fun, food, people I loved and events I enjoyed. Photos became a source to remind me of these good times, rather than just regret the bad. I became more curious about life, more open minded. I could wonder why people had behaved in a certain way or why they had made decisions for me or about me. Even when I had been badly hurt, it helped to turn some of those memories round.

Feeling alone, desperate and depressed is awful, but I believe that even when everyone else has given up on us, we are enough and we will find a way through. I cannot pretend it is easy, but it is definitely worthwhile. Emotions are there for a reason, and accepting both their existence and their transience gave me some of my first steps on the journey to recovery.

Suggestions for Friends & Relatives

Physical disease is so much easier to understand than any kind of pain or discomfort that has to do with emotions. Relatives and friends of patients saddled with a psychiatric diagnosis often become secondary victims themselves, as they struggle to understand what is happening to their loved one. All too often they feel sidelined, frustrated and undervalued. But there are some things which they can do to help their loved-one’s recovery, and other things which, however well intended may have less than beneficial effects.

When working in ED, I came across parents of children and adolescents who were desperate, convinced that their child would get the help they needed through mental health services. They believed that the long-awaited referral to CAMHS would at last sort out the problems. But the truth is, that it is rarely so easy in any age group, and often the first appointment with mental health services also marks the first step on a treacherous journey marked by repeated crises.

It’s ghastly to see any of these families in pain, as they wonder how they’re going to survive it all. Then when the labels given through psychiatric diagnosis do not provide the expected relief and the prescriptions for psychiatric drugs that follow, are simply not ‘working’, the situation becomes a whole lot worse. When the patient returns to the doctor, the usual first response is to increase the dose, and when this proves ineffective there will be further changes in the medication regime – a substitution of a new drug, or perhaps an additional prescription. Far too often, any prior expectations of cure vanish, and what’s left is a patient saddled with long-term prescriptions for psychiatric drugs plus all their attendant adverse effects, which just compounds an already dire situation.

More often than not, looking back, the ‘signs’ of struggle were apparent, even if not fully appreciated, for weeks or months before the sentinel event or crisis that created the desire to seek help from healthcare. Yet, whatever it was that led up to the initial problems becomes buried under the complexities of life as a psychiatric patient.

Frequently, I read emails or hear reports from desperate friends or relatives, describing the difficulties faced by a loved one who has been a patient within mental health services for months if not years. For many, it’s like the wool has fallen from their eyes, as they realise how their loved one is now a mere shadow of their former selves, and they see no hope of change. The promise that a hospital admission might ‘help’ has failed to resolve the root causes of the problems, and even when their loved one, at the centre of their concern is ‘more manageable’ as a result of the drugs, they are still not better. Often friends and relatives want answers, but more commonly they want to be able to DO something. They find it unbelievably difficult to just accept the situation and wait patiently. And why should they? 

The trouble is that such impatience can easily be misinterpreted, both by their loved one and by the professionals involved in their loved one’s care. Relatives’ concerns are only valid when they are in line with the thinking of the psychiatric team – for instance, if they worry that their loved one is not taking their medication, then of course the psychiatric team will be onto it, but should they express reservations about the treatment their loved one is receiving, then they will be classed as interfering.

The relative may have been the one to ‘get help’ for their loved one in the first place. They may have valuable information, having witnessed their deterioration and seen the futility with which their loved one strived trying to get the help they needed. The relatives may even credit themselves – indeed more than once I’ve heard it said, “it was me who got them sectioned.” But having handed their loved one over to the ‘safety’ of psychiatric services, the expected return to ‘normality’ has not been realised.

Some relatives give in; they accept the traditional psychiatric mantra which deems that their loved one will be ‘mentally ill’ forever, always needing the drugs, believing that without them, their loved one will inevitably deteriorate. Of course, this is the line sold to many patients too, and it is easy to believe as evidenced when relatives witness for themselves what happens when their loved one rebels and stops taking their prescribed drugs. But how are friends and relatives to know or understand that what they are seeing may be the effects of sudden withdrawal, when GPs don’t know, patients don’t know and information about withdrawal syndromes are not passed on when their loved one first starts taking psychiatric drugs. Few people know that in the days before modern psychiatry, with support, the vast majority of patients recovered spontaneously without any drugs and without recurrence of their previous problems. 

But some of the worst descriptions I hear are how powerless relatives feel. Many feel the need to write to the psychiatric team – and are frustrated when they receive no reply. Their loved one’s treatment is shrouded in secrecy, wrapped tight by the powers of confidentiality and nobody from the psychiatric team will say a word without the loved one’s permission. And let’s face it, nobody knows what goes on, what is said, what meetings take place, what is decided, not even the patient, because all of it happens behind closed doors.

Once the relative has earned the reputation of ‘interfering’, there is no going back. Even if the loved one decides for themselves that they want their treatment to change, or their drug doses to be lowered, or to stop them altogether, they will forever be suspected of having been influenced by their ‘ignorant’ relatives.

The relative is absolutely powerless against a mighty psychiatric machine that wields its mechanistic determination to go it alone and considers it to be the ‘right’ thing to do.  Psychiatrists can detain, lock up and forcibly medicate their loved one ‘in their best interests’ and for sure, a psychiatrist’s opinion of a dissident relative is that they do not know what is best for their loved one –  despite the fact that said relative is far more acquainted with the personality and the life of the patient they’ve loved and lived with for years on end.

Unfortunately, it remains commonplace for psychiatrists to ‘forget about’ their patient’s life before diagnosis – yet there is always a story behind the breakdown. However, in the present era, psychiatry no longer concerns itself with such detail. Even when their patient has had significant trauma earlier in their lives, it will not be seen as a root cause but rather reframed as leaving the patient with ‘vulnerability factors’.  This is justified by the continued belief that there is some kind of, as yet undefined, physical reason which makes the person ‘mentally ill’, despite the fact that extensive research has not provided any reliable, reproducible evidence for this. The process which psychiatrists use to diagnose mental illness is a subjective assessment of their patients’ reported, subjective symptoms. But friends or relatives who dare to challenge such expertise will invariably be answered with a response stating that the patient is mentally ill, the psychiatrists need to do their jobs, and invariably the patient needs to be treated with various psychiatric drugs (and possibly electroconvulsive therapy -ECT).  

Relatives may succumb to their own despair when they see what happens as their loved one loses their independence and adopts a life defined by vulnerability, strongly allied to mental health services. But all too often, as time passes, the overworked psychiatric service loses interest, drops the patient, leaving them with their lives ruined. By now their loved one will be dependent on the benefits system – too late for careers, too late for marriage and family, and more than likely plagued with physical health problems caused by the adverse effects of years on psychiatric drugs. That is, if they survive.

Too many lives are lost before their time, and the relatives will never have the opportunity for open-minded exploration of what really happened, let alone restitution.

Bleak though this outlook is, it is still vital that friends and relatives do not lose hope.  It is necessary to be realistic, but also to understand that there are alternative ways to help, even if it is not through the most obvious ‘healthcare related’ routes.  It’s very tempting for friends and relatives to tell their loved one ‘what they need to do’ but unlikely to be successful. I would encourage them not to take offence but instead, remember that most patients who are receiving psychiatric treatment will find it easier to take advice from ‘the experts’ in their psychiatric team – and it’s very difficult to argue with that.

So, what if anything, can friends and relatives do?

Former psychiatric patients who get through their experiences and go on to live fulfilling lives tend to say similar things – it was when they took back control of their lives and circumstances that they also discovered that they had it in themselves to recover. I think this is true for any of us – belief in ourselves works wonders. But fostering a loved one’s independence can really take some self-discipline and it may be necessary to do the exact opposite of what is not working at the moment. It may sound cruel when a loved one has seemingly reached rock bottom and indeed has been dwelling there for a considerable length of time, but we have to curtail ourselves; we must understand that ‘rescue’ is not the answer.

Patients who have been relying on others, particularly psychiatric services, often for years at a time, live in hope that someone else or something else will provide the key to get them out of their difficulties. When this has failed, believe in them. Believe that they have the capability to make their own choices, their own decisions, because they are the ones who have to live with the consequences, and they are the people who hold their own keys to lasting recovery. Even when mistakes are made, it is this self-reliance which is necessary to rebuild the resilience that will carry them through the inevitable ups and downs of life that follows.

Of course, I am not suggesting that friends and relatives abandon their loved one, but it’s important to see that a beleaguered social system often relies heavily on them to plug the gaps in care. Yet when those relatives are powerless to bring about the change they want to see, they run considerable danger that they will end up feeling used, and in the long term, it will just lead to resentment.  It’s worth considering whether stepping away with love might create space for their loved one to find opportunities to help themselves. If it does means restricting previous physical or financial support, then it’s vital to make sure that the person at the centre of concern, knows that they will always be loved.

In addition, I believe that friends and relatives must learn new ways to look after themselves. They need to model self-care – find new ways to exercise, new hobbies or interests, eat a good diet, join social groups or explore spirituality. If they are using their own ‘props’ – drinking too much, excessive eating, shopping, gambling – then it is important to demonstrate that they too can get the help they need to live in a healthier way. (Although I would advise against medicalising such issues.)  Friends and relatives would do well to learn about emotions, understand how normal it is for them to fluctuate, understand how they are the body’s signal to tell us what is going okay and what needs to change. None of this needs to be expensive – there are online communities such as ‘Drop the Disorder’, websites such as ‘Mad in the UK’, and these point to many alternative resources as well as providing inspiring examples of lives changed, from those who have successfully recovered.

I suggest that relatives need to be proactive themselves when searching for friends and allies with whom they can share their pain – to be able to be real, curse and swear with frustration if necessary, but remain out of sight and away from the ears of all who might misinterpret such distress or use it against them. When friends and relatives find their own versions of contentment and peace, it will make much more sense to their loved one, rather than just talking about how to live well in difficult circumstances.

Undoubtedly it is hard, and while such struggles continue, above all else my advice is to cling to hope day and night. Model endurance and persistence in the way you hope, and perhaps in time your loved one might find their own path through to the light at the end of the tunnel.  It is only when these incredibly challenging times are over, that friends and relatives may find the opportunity to share their own struggles and the truth of what happened, should they still wish to do so. 

Bad Hair Days

Maybe you are wondering what bad hair days have to do with ‘depression’ or any symptoms commonly diagnosed as a mental health disorder. After all those of us who have the type of hair, that betrays us from time to time, or the type of skin that breaks out into a crop of unsightly spots or blemishes are many.

But today having woken up to find that my hair will not obey my entreaties, I find myself reflecting on why it is that I care about my appearance, and whether it matters. Undoubtedly there are strong ties between what we look like, how others perceive us, how we think others perceive us, how much we are valued within society, and how much we value ourselves.

 But caring about what we look like is neither unusual nor abnormal. We live in a world obsessed with appearance. Fashion is a huge industry, as is cosmetics, let alone the plastic surgery options which are available. In short, society has decided it matters what we look like, and this has always been the case throughout history, and for women and girls in particular, the concept of beauty has always been both a snare and a prize. 

For most of us, gifted with sight, we evaluate others swiftly just by glancing at their appearance. We note physical characteristics subconsciously and we use this information to decide whether someone is friend or foe, part of our family or ‘tribe’, or an outsider. This has always been part of human nature.

But we had no choice about the physical bodies we were born with and furthermore will reach their prime long before we might want them to, in other words we will age, and most of us will not find that welcome. Yet it is interesting that even the most beautiful people will still seek reassurance from friends or family about their appearance. “Is my makeup quite right?”  or “Do I look good in this colour/ this dress?”

But self-esteem is not so much about the fact that we care about how we look to others, it is more to do with the internal value we place on ourselves, although it may be manifest in the way we think we look or we think others see us. And self-esteem like many things in life is unquantifiable. We’re told it’s not good to think too highly of ourselves – ie to have an inflated ego, but mustn’t think too badly of ourselves either. Just like Goldilocks and the three bears – our self-esteem bowl is supposed to be just right.

Poor self-esteem is a topic discussed widely by therapists, coaches and mental health professionals alike. It is often seen as one of the reasons behind ‘lack of success’, ‘lack of drive’, symptoms of depression or anxiety.  Poor self-esteem is not something we like to admit to, and it tends to add to the emotional burden when life is not going so well.  

Just as we have no choice about our major physical characteristics, we have no choice of who are parents are and no choice of who looks after us, certainly as young children, or how we are treated. But it is often these early years when people say things to us and about us, that we develop the internal values that we will carry well into our adult lives. Into this risky start in life, we are expected to develop into rounded, controlled, mature individuals with perfect self-esteem, who look our best, try our best and perfectly accept what life throws at us. But we all know that life is not quite so simple.

In the melee and chaos of growing up, our personalities develop and some of us are naturally more confident than others, just as some of us are more sociable, more eloquent, more talented, more intelligent, more ‘xyz’…and then we realise that we are also in some sort of competition which will favour some with certain characteristics more than others, and then life takes on another dimension.

Universally people need each other, and we all want to be loved and cared for to some extent; there will be an inevitable tension between our desire to fit in with our culture and community versus our desire to be unique as an individual and above all else ‘successful’ in life. (Even though we barely stop to think about what success actually means.) But instinctively we feel we need to be successful, in order to be valued, possibly to be paid and certainly to have a ranking within the society we find ourselves in.

So, as adults when we find ourselves struggling with life, there are many different ways we deal with it – some strategies are conscious within our awareness, and others develop surreptitiously. But it’s worth remembering that even the most affluent, apparently successful individuals may not feel good about themselves. In fact bullies or those who use bullying, are often projecting what they feel about themselves onto others, punishing their own low opinion of themselves by punishing others. I think it is much more admirable to admit to personal struggles and seek help to change.

What I have discovered is that when I don’t feel good about myself, particularly when my  emotions are sending me a tsunami of confirmatory messages that I am in a mess and screaming for attention, then it is definitely time for an internal audit. Time to take stock and ask why. Sometimes, it’s as simple as having an honest conversation with a loved one. Certainly in the past, it was far more complicated and it took me to see a therapist. But now, I know that emotions are here to help, rather than be ignored or worse got rid of.

Whether we believe our life had a preordained trajectory, and so whatever we decide, it will make no difference, or the opposite – that the way our life has worked out is as a direct result of our choices, even that we have ‘failed’, the value we place on ourselves will influence how we cope with the crisis, and our subsequent recovery. But what we have survived already gives us hope; naturally we are a resilient species.

Being born, has already given us worth – our life has value. We are never going to be perfect and so there will always be parts of ourselves, we might not like. Nonetheless in honestly embracing the whole of our personhood, the good, the bad and the ugly, we can learn to find ourselves worthy just because we exist. Emotions are there to help us, to point to the need to change. It may mean we need to go and talk over, what has happened, who has said what or process the beliefs we hold, but we can recover.

Even those bad hair days are there to send us a message because they’re part of who we are. We may not be able to change much about what we look like,  but what we can change is our internal views of ourselves and discover what values we really cherish the most in this world.

The GP Active Problem List: an Active Problem for the Patient

This blog was first published on Mad in the UK in Septermber 2025

Over the last couple of years, I have become one of many volunteers who give voice to the patient perspective as a peer leader and ‘patient safety partner’ for the NHS. Everyone has their own story to tell and not everyone shares the same perspectives.  Predictably many people in this arena believe that psychiatric diagnosis, psychiatric drugs and ‘treatments’ are a good thing, and what the mental health system needs is more of the same.

But my personal experiences are equally valid and so I choose to share what I have been through and contribute as best as I can, in the hope that it will improve the care of others who have had the misfortune to become entangled within psychiatric services for any significant length of time.

One of my more recent experiences brings to light the complexities and the pitfalls associated with the digitalised medical record, particularly for those of us who have found ourselves diagnosed with a ‘psychiatric’ condition.

Six years ago, I made the decision to tattoo my arms to try and camouflage the scars left after what for me, was a regrettable five minutes with a razor blade on a visible part of my body. Self-harm was never a healthy coping mechanism for me at any stage during the years I was labelled with’ treatment resistant depression’ and for the most part, I don’t think about it anymore. But visiting the doctor still fills me with dread. Some may say I am supersensitive, and perhaps I am, but the fact is that I have had symptoms ignored as well as been subjected to overt ‘eye rolling’ and derogatory comments during the time I was a psychiatric patient.

I wonder how many people are aware of the ‘Active Problem List’. It commonly sits on the NHS primary care record, so that when a GP accesses their patient’s data, there is a list of information alerting them to conditions that the patient has had in the past and which may be affecting them currently. As far as I understand, such a list should be more than an aide memoir, because it’s designed to keep patients safe whenever they seek help from primary care, and it can easily be copied and communicated to other care providers.

However, I was in for a shock when I discovered that the historic data from the years I spent as a psychiatric patient sat on my ‘Active Problem List’. Frankly I was horrified. While it is not unusual for doctors to see patients labelled with various psychiatric diagnoses, what distressed me personally, was what the specific information on this long list said about me.

Each line on the list was preceded by a different diagnostic code – I counted 15 specific ‘items’ on my list which related to an ‘episode’ during the time in my life when I was incarcerated in several psychiatric hospitals. It seemed cruel, as though these particular ‘events’ had been plucked from my vast record to give me maximum embarrassment – most majored on self-harm. Each code was followed by a description – words like:  ‘suicide attempt’, ‘overdose’, ‘laceration – self-inflicted’, ‘deliberate self-harm’,  or various iterations, as well as ‘chronic depression’, ‘first ECT’, ‘admitted under section 2, ‘admitted under section 3’…….the exact wording may not be entirely accurate as I cannot bear to go back to the original, but you get the picture.

So here I was more than a decade since the last time I was hospitalised, more than 20 years since the first entry on the list, and yet these were termed ‘active problems’.  Thankfully, I no longer take any psychiatric drugs! Perhaps If I did, I would indeed still have ongoing events to add to the list of coded entries, because for me, being prescribed antidepressants preceded the suicidal thoughts, suicidal intent and the acts of self-harm that followed. For me, psychiatric drugs were the compounding factor that turned my reasonable ‘distress response’ to abnormal circumstances into the nightmare diagnosed as ‘depression’ which then escalated after ‘treatment’ with multiple drugs and ECT to further admissions and detentions under the mental health act.

Of course, the problem list makes no mention of why I had reached this awful state, merely mentioned the progression to ‘treatment resistant depression’ which is supposed to be enough information to explain everything but in fact explained nothing. What was worse, was the realisation that as far as my medical records were concerned, doctors were being warned to keep their beady eyes on me because one never knows what might happen given this patient’s history – she’s clearly highly unstable.

It’s funny how often when I voice my fears of having this information front and centre, I am given a somewhat patronising response – “there’s nothing to be ashamed of”. Please don’t get me wrong – I do not think anyone should be ashamed by their encounters with the psychiatric system, but I’m talking about me. I spent years being told that my feelings were pathological – and now I don’t like being told what I should or shouldn’t feel. I am willing to discuss what happened when asked, but I do not want the most sensitive parts of my psychiatric past on display without my consent. It feels like a violation.

So I sought advice; I needed to know where I stood legally on how to get it put right, before I formally wrote to the GP practice. To my dismay, I discovered that it is impossible to get ‘psychiatric events’ erased from the medical record. After several exchanges by email and phone via the practice manager, I was invited to discuss the situation with my GP and to give her credit, she completely understood that the information held on the ‘active problem’ list was no longer relevant. But she also reiterated that there was no way the information could be deleted from my record, however irrelevant they may seem to me.  When I pointed out that it also contained factual errors like incorrect dates, she sighed. I had stumbled upon digital mayhem.

At some stage during the digitalisation process, a non-clinical administrator had trawled through my paper records from ‘back in the day’ and entered the information onto the digital record and now those original records had been archived. My GP wasn’t about to offer to do it all over again, and who could blame her? After all, I had spent seven years in and out of hospital from 1994-2001 and had hundreds of letters and clinic visits and trips to A&E during that ghastly, seemingly endless nightmare. And it hadn’t stopped there but continued with another peak from 2005-7. My GP records were huge – perhaps I should be grateful that only 15 lines worth had appeared on the active problem list.

But I pointed out another major concern – important information about my physical health was missing. There was no listing of the fact that I had a severe, genetic reaction to anaesthetic. There was no note about the appendicectomy or the preceding sepsis after another GP had summarily dismissed my complaints of abdominal pain which led to a delay in diagnosis. My current GP did her best during our 10-minute consultation, dutifully cutting and pasting from list to list but it was at best a rushed job. But at least I thought the new ‘problem list’ was acceptable.

It was all forgotten by the time I had the cancer scare and an urgent referral to a gynaecologist. Naturally I was slightly anxious before I went to the appointment, but my heart rate went through the roof when I saw the gynaecologist’s computer screen.  There before his eyes was that original ‘active problem’ list full of the historical entries relating to my time as a psychiatric patient.

I don’t like the idea of going to meet a strange doctor especially when I’m feeling particularly vulnerable, and if they’ve done their due diligence, they will have already read the referral letter and have a preconceived idea of who I am and what I’m like. Doctors can’t help being biased – we all are – it’s human nature. And don’t tell me that stigma no longer exists. I know full well it does. The thing is, I’m a doctor myself, and it very definitely does.

In 2015, I initiated a pilot study to look at the attitudes of A&E doctors towards patients with a known ‘history’ of psychiatric diagnoses. The results confirmed what I had already observed. When asked anonymously, doctors at all levels of seniority tended to rank those with psychiatric diagnoses  as possessing a lower pain threshold; they thought that these patients were more likely to complain about their symptoms than others, and were more likely to attend A&E for trivial reasons…in short, patients with any kind of psychiatric label were less likely to have their physical symptoms taken seriously. They were given short shrift.  Even in the 2020s, I had seen this phenomenon on a regular basis, and those of us with a history of ‘mental illness’ were more likely to have our symptoms labelled as  psychosomatic – in my own words ‘fobbed off’.

I have tried to discuss these attitudes, but usually it provokes a defensive response – “things have improved”, is what they say.  Culture is slow to change, and while it is easy to say the right thing, inherent bias continues to be practiced. It may be more difficult to see, but prejudice and discrimination continue to exist.

Back to my story – when I saw the gynaecologist, I was mortified.  My records were wrong, out of date, inaccurate and revealed unnecessary and sensitive information. Knowing I had to return for further investigations under anaesthetic, and then for surgery, I was determined to get it put right.  But it was galling to have to explain the situation in detail to even more people I didn’t know.  It turned out that the hospital could not ‘alter’ my records because this information had originated from my GP. The only way to get it changed was for the GP to initiate contact with the hospital in writing using specific wording – the GP must request that my referral be ‘redacted’ from the system, which would then authorise the data controller to remove it. Following this, the GP must then forward a replacement referral with the correct information.

My GP was bemused. She could not understand what had happened after she had already edited my ‘active problem’ list. When she delved into it, a wider issue came to light. The practice tried to understand how the software had generated th pre-populated referral form and went as far as contacting their software provider for the region. It turned out that certain coded entries were pre-set – to be pulled from the entire medical record automatically and could not be changed, (whether the GP or I thought it to be relevant or not). I felt sick.

Although the GP practice did their due diligence and sent out a new edited referral letter to the hospital, they also realised that the same thing would happen anytime a referral had gone to any provider elsewhere in England, and so this information would spread throughout my medical record. They agreed to put a note to check should I require any further referrals. But this illustrated the potential for catastrophe, not just for me in this situation, but for the many people who do not want to be pre-judged on sensitive or erroneous information which would then be eyeballed by numerous people throughout the NHS.

Within days of stopping the last antidepressant in 2018, I had started to suffer from symptoms of small fibre neuropathy. I believed the latter to be a protracted withdrawal syndrome – but the specialist London neurologist refused to acknowledge that antidepressant withdrawal could possibly be the cause.  And then I remembered – perhaps he too was biased – after all, he had also received that same information about my past, before I had discovered that it was sent with the initial referral.

If I had committed a crime, then after seven years it would be erased from the system, but not a psychiatric history – that will stay on my record for ever. There is no right to forget, and it means that however hard I try, I cannot erase the long and checkered history described by my medical record.

Although what happened then does not define who I am now, I still hope that in speaking out in my role as a patient voice, will provoke some change for the better in the NHS. But more than that, I want to advocate for a different way of thinking altogether.  Many who read posts on MITUK or who join AD4E, support the de-pathologising of what are often known as ‘mental health problems’. Those who suffer distress or struggle should be offered alternative ways of receiving support, and then hopefully fewer people would succumb to the routine medicalisation which is so prevalent in society today. Perhaps then they would be spared the regret and embarrassment of finding highly sensitive information engraved forever onto their medical record.

Doing Battle with Christmas Cheer

This blog (by Cathy Wield) was first published on Mad in the UK December 2024 and still relevant this December 2025

“I love Christmas! I love the lights and the excitement,” speaks the voice of my imaginary friend…….the one who is a conglomeration of all the positivity that is trying to make its way into my jaded and reluctant psyche.

“Humph!” I retort, “I’d rather stick to my Ebenezer Scrooge impression – HUMBUG!”

So what is it that polarises people over what is known colloquially as ‘the Christmas spirit’?

When I was a child, life was so simple. Christmas day in my family was not a religious affair, and wherever we happened to be in the world, it always meant presents. Not loads, not lavish, expensive gifts, but enough to be exciting and provoke a sense of expectation and wonderment. We always ate together and may or may not end up with the dreaded game of monopoly…….

Then when my own children were little, it was about making sure that their presents had been bought and wrapped, that family were invited and given a good lunch. Some years we would visit grandparents with the rare treat, of a meal prepared, but there was always tension. Would the children be happy and ‘behave’ themselves, would family arguments be kept at bay? How soon could we get home and relax?

But Christmas really stopped being any kind of pleasurable experience once I was diagnosed and labelled with ‘depression’. By then, the adult friends and relatives had developed their own expectations, and I felt watched. I felt I must put on a mask and hide any feelings of misery, sadness or despondency and yet even if there were short moments when I enjoyed myself, it made me think I was a fraud! It seemed like a no-win situation. Every year, Christmas became an ordeal to be lived through and the only respite was a sense of transient relief once January brought the festivities to a close.

But what about now, when I am well? Surely, I am full of the joys of survival and recovery! I admit I still do not look forward to Christmas and I have been in a reflective mood lately. I am trying to understand why, I feel the way I do, and I have concluded that it is not because of any association with the difficult Christmases of the past. But I know enough to let my feelings be. I have heard too may people say, “it’s Christmas, so I ought not to feel the way I do,” and in the past I have been subject to a spiral of guilt and that’s one way to make glum emotions feel worse.

For many people, public holidays are particular times of stress and hardship. I live in an affluent part of the UK, and yet there are plenty of people who are struggling to meet the overinflated ideas of what Christmas should be. Gone are the days, when it was primarily a religious festival; for all of us are subjected to the advertising which tries to persuade us that buying gifts will somehow show our love or heal the rifts within relationships. It is the time of year, when every retailer in the country is poised to make as much money as possible, and who can blame them?

But although we all know that material goods however ‘valuable’, will not make us happy, the relentless advertising tells us the opposite. Now, I’m not against the concept of giving gifts, but I would rather take time out to think about what Christmas really does or does not do for people, regardless of their religious persuasion, (or none at all).

When I worked for a charitable organisation who provided help for people who are homeless, it gave me further insights. The public gave more generously at Christmas and the homeless clients who ate at the community centre expected a good meal.  But for many of these individuals, the holiday period was highly triggering. It was a poignant reminder of what had been lost – those family ties which had been severed for any number of reasons, those loved ones who had died, the disappointments at the end of another difficult year – some who were staying in the hostel, couldn’t bring themselves to the meal – there was a sense of hopelessness when looking at the future………

To add to this, society in general encourages a considerable amount of boasting about how much alcohol is going to be consumed over the holiday. Yet in the homeless community, the use of substances and alcohol had become an understandable desire to obliterate awareness of life’s problems.

I have also worked in A&Es over the years, including on Christmas day shifts. It was at those times that the phrase ‘demon drink’ seemed a reality. It wasn’t just the physical fights which were so poignant, though people frequently come to blows when their inhibitions are diminished – there was also the domestic violence, the verbal arguments, the feuds and the despair which led to a sharp increase in self-harm and suicide attempts over the holidays. There was also a phenomenon known as ‘granny dumping’ where older relatives were literally left at the entrance as annoyed relatives had just had enough!

The GP surgeries are closed, the dentists are not available, cars, washing machines, boilers all have a tendency to break down and there’s only limited emergency services available. And what about the people who literally have nowhere to go?  They may be offered a bed for one or two nights, but then they are turfed back onto the streets……

No, why should I agree to look forward to the sparkle, the glitter and the sickening sound of Christmas music being played over and over again? Bah Humbug!

But my intention is not to leave you in all my personal doom and gloom because surely there must be some reasons to feel uplifted as Christmas draws near?

Whatever else, just being here, alive, in 2024 means something. Nothing about the past can be changed and for sure life will continue to have its ups and downs. For me, this year has certainly been no exception and has presented its own share of challenges. But as I reflect, perhaps I can think about the ways in which I have grown through it all.  Maybe it is time to give myself a pat on the back because I have become more able to ‘sit’ with my feelings – when I feel anxious, afraid, or despondent, I have been less inclined to fight it or to push those emotions away. When I have grieved, I have allowed tears to be shed over my losses. Through the painful times, I have gained more understanding that all my emotions are part of who I am, and they can be my friends, if I will let them. While I might wish for better things to come, much of what happens in life is not within my control. I must continue to dig deep and let go of what I cannot change, while I persevere with the things that I can, like my responses to life’s twists and turns.

Let’s face it, the “humbug” response is not very welcome in our culture, but for today, I choose to honour my complicated emotions. I will also remember to appreciate those I love and care for, and the many beautiful friends I have met over the last year. As we enter 2025, I will be reminded of the cycle of nature, and the opportunities for new growth. Maybe I’ve sucked on the humbug for long enough, but I’m also grateful for its minty flavour!

Merry Christmas to everyone, and Happy New Year!

****

I feel broken hearted.

The Latest Global Delusion

I write this with no intention of causing offence to anyone who has a psychiatric diagnosis, whether it is something they have chosen or agreed to willingly, or whether it has been imposed on them. My argument is with our society that has forced people to believe that their problems are a result of their ‘faulty brain’ or ‘faulty personality’ whilst ignoring the societal issues that cause so much widespread distress, which people experience as ‘symptoms’.

While a sizeable minority of the population are totally convinced that they need to be treated differently because they are disabled by ‘mental health problems’, the door is open for right-wing extremism.

Historically people who received psychiatric diagnoses and who were hospitalised or needed a lot of care, found it very difficult to get their needs met. They were too embarrassed by the labels put on them and made to feel ashamed; they were weighed down by their troubles, and kept sedated by the psychiatric drugs, unable to function, let alone be able to speak up for themselves. I was one of those people over a period of many years.

 It would be great if the most vulnerable members of society, including those with serious, severe, life limiting or disabling conditions were able to access the resources they need, but this is not the case. Certainly, here in the UK, the new reality is that there are a lot of very vocal people, who claim that they themselves are particularly needy. I am not here to judge – my concern is that it dilutes the message, and nobody really understands what ‘disability’ means any more.

For instance, there has been a recent large increase in those who consider themselves disabled after their acquisition of an ‘ADHD/autism’ diagnosis and many of these people are very articulate. They are not shy of demanding their ‘rights’ and it is the statutory duty of institutions and organisations to provide reasonable adjustments, for those with disabilities.

Yet the sheer numbers of such claims are fast becoming untenable and inevitably if every single person were to be treated as a special case in such circumstances, then finite resources would quickly become depleted. This has already started to happen, and to some extent, those who are most in need are already being denied essential services.

It is hard to watch, and I feel broken-hearted.  I can’t help wondering how this will end. What to me is so difficult is to hear, is that people think that they are ‘the problem’, and are willing to embrace the falsehood that they have a ‘faulty brain’, when neither of these things are true. If you listen closely to what people are saying about what they are experiencing – it actually says a lot about the world we are living in now. People who are distressed, upset or suffering in this way do so, not because there is something wrong with them, but because there is something wrong with life! It is the same throughout the field that is known as ‘mental health’. People have been conditioned to believe that they are the problem, when actually it is quite the opposite if you care to do a rational analysis of what has happened to them or what is currently happening in their lives.

It seems really unfortunate that people who have genuine life problems, need to acquire a mental health diagnosis to get their legitimate needs met.  Actually being labelled as ‘neurodivergent’ and then having all one’s problems conveniently packaged up in ADHD/autism diagnoses, is a way that government institutions pretend to have all the answers while simultaneously avoiding  their responsibilities.

I do understand what it is like to experience the initial relief when given a psychiatric diagnosis – to finally believe that what we think of as ‘symptoms’ or concerns have at last been validated. It is only natural, and fully justifiable to want to feel heard – yet, so few people are able to see the longer-term dangers in using such strategies.  

I am not the only one to predict that a serious backlash is inevitable, and it looks increasingly likely that this will come via right-wing political activists.

‘Neurodiversity’ has become another soapbox, one which is being used by increasing numbers of people in every walk of life. But when it is used to shout loud, making demands to be heard as they draw attention to their plight, it can easily be misinterpreted as if people are saying, “Look at me. I am different. I am disabled. I need to be treated with special care. I need this more than you do.”  

It is in such contrast to the silence  – the hallmark that defines those who are seriously vulnerable as a result of their emotional difficulties or extreme struggles with life. But being ‘too’ vocal is not without its attendant difficulties. Unfortunately, the authenticity of those who inadvertently advertise their life problems with demands for special treatment is falling under scrutiny, and this is adding fuel to the fire of those who believe that the ‘strong, robust, resilient, white, rich and powerful’ are the only ones who can save this country.

Undoubtedly people have problems. People have difficulties and experience distress for multiple reasons. But what is also true is that many ordinary people are under the influence of this mass, global delusion – one which promotes an unscientific, unevidenced label such as ‘neurodiversity’ and describes ‘ADHD/autism’ as a real, physical, definable entity when it is simply not true.  While this has been widely marketed in healthcare and is another inroad for prescriptions to be issued at the behest of the pharmaceutical industry, it also encourages the completely fictitious notion that people’s problems arise from an innate chemical imbalance in their brains, or that their brains are ‘wired differently’ despite plenty of evidence to the contrary.

No, we are not weak characters, and our brains are not fundamentally flawed. We are all different and yet have much in common as human beings. If there is such a thing as ‘neurodiversity’ it means what it says – we are diverse in our expression as people, the way we behave, the way we think and the way we feel and as such we are called to honour and respect our differences as much as we do our shapes, sizes, skin colour, talents, presence or absence of the ability to hear, see, speak, mobilise or in any other facet of our humanity.

While the UK population continues to embrace the so-called condition of ‘neurodiversity’ and simultaneously embraces ‘treatment’ of the variant which they have called ‘ADHD’ with stimulant drugs based on amphetamines, it is also clear that it would be a disaster if there was any cure!  The very concept of ‘neurodiversity’ lends itself as both protection against a harsh world, and also a benefactor for those who have made use of this diagnosis as a gateway to obtain additional help or gain special privileges. This is not wrong in itself; governments have always thought it necessary to ration additional benefits to those who need it most.

But what is terrible is the widespread ignorance about a simple truth.  ‘Neurodiversity’, ‘ADHD’, ‘autism’, ‘ASD” and most other psychiatric ‘diagnoses’ are delusions manufactured by industry and spread by elitist medical professionals and psychologists throughout our £120 billion funded NHS (as well therapists/counsellors in the private sector). I will say it again – people’s needs are real. But the supposed ‘pathology’ is not.

Those who continue to perpetrate this high-level fraud, along with others who are simply duped, are more deluded than those who are forcibly detained in their psychiatric hospitals with so called ‘psychosis’. The latter group have the possibility of recovery. The former have no insight and present a serious danger to the global community. In the UK, they are robbing our nation of scarce resources by increasing the inequality gap whilst knowingly poisoning a great many people with chemicals, disguised by the clever nomenclature of drugs.  and some of these same people will die an earlier death as a result.

If people are feeling alone, set apart, different, as though no one else understands them – then the fault is societal, and the solution will be found there too. If children (or adults) find themselves unable to concentrate at school or in the workplace and are constantly distracted – then the very fact that more and more people are admitting to this, must surely draw attention to the way our society sees and uses education and work. In addition to this, there are so many adversities that people have lived through both as children and then as adults, which continue to affect us later in life.

How can we think that the answers lie in drugs, or the need to tell people that they are remarkably different from everyone else? Why should they have to learn strategies to cope with the rest of the world? Why are we not looking at what it is about modern living that has made life so unbearable for a significant number of people?

Surely if we tackle the real root causes, it will not only benefit a larger number of people, it would  prevent the terrible problems happening in the first place.

Of course, this is not popular with politicians – why would they want to tackle poverty, socioeconomic differences, unemployment, the use and misuse of technology, the way schools and employment are set up, the provision of better housing and a good look at the food and drink industries for a start. It would be time consuming and potentially costly – it is far easier to label those who feel unhappy as being ‘ill’ or ‘disordered’.

But since the numbers have risen so drastically,  many people are now claiming to be disabled, and the backlash will come. Those on the right-wing spectrum of politics may well end up thinking that they are the only ones who can save our nation from itself; the left-wing and those on the middle ground seem to have fallen for the delusion of psychiatric diagnosis (including ‘neurodiversity’), as much as anyone else. When the time comes, those in power will hit hard and fast.

As a result, all who are vulnerable will suffer. But those who will lose the most are those who were born seriously disabled, and/or from minority ethnic groups, and/or who have become so ill that they are unable to work. Amongst them will be those who are harmed because of the drugs and other ‘treatments’ prescribed by their doctors and other health professionals. This is already happening – the prescriptions for psychiatric drugs are increasing, as is the all-cause mortality rates for those taking them. The NHS refuses to recognise its responsibility in making so many people seriously unwell.

While the root causes of people’s distress continue to be ignored, whether socio-economic, family or trauma based, children and young people suffer.  The potential for prevention is missed – instead the continued cycles of poverty and neglect will go on and on endlessly. It is ironic that the NHS is determined to ‘level up’ in the pursuit of health equality, when this trend is producing the opposite effect.

Meanwhile those who are middle class and functioning well in their jobs, may suddenly decide that perhaps they have outgrown their ‘neurodiversity’ label as the movement loses political favour and their privileges are withdrawn. But they will survive. They always do – because in the end, it is just another example of ‘survival of the fittest’. Those who shout loudest win. We might warn them now, but it falls on deaf ears – as long as they get the most from the system while they can, why would they care?

Those who lean towards right-wing politics are not any different – ‘me and my family’ will always be the priority, whatever else is going on in the community. As humans, we have an innate tendency to choose to reward those who are most like ourselves, as long as they are seen to be deserving. Whether born into privilege or just lucky in life, hard work will always be revered. But those who cannot contribute because of their misfortune, are of lower status and lower priority.

While most of the population is literally under a mass delusion – and seem to want to see themselves as mentally ill or disabled, it will serve a purpose, when those who hold power want to rid themselves of those they see as parasites within our communities. Even though few politicians care enough about the future health of our planet, they feel threatened by those who might rob them of their eutopia. Before we know it, eugenics will be on the rise again.

I admit to my own existential crisis – how can the world sustain this level of selfishness? Please prove to me that I am wrong. Prove to me that this will end well. I have no joy in predicting a bleak future. And what should my own response be? What can I do or should I do? Once upon a time, I was certain there was a God, but now I can only hope.

I hope for redemption. I hope there is more to life. My only consolation is that whether the human race destroys itself through war, or by continuing to raise the temperature of the planet, it seems certain that nature will survive. It always has done, and it always will. But that does not help much now, as I witness this mass, global delusion play out, and more and more people cling to a cleverly packaged pseudo-diagnosis, with pseudo-treatments.

‘Take stimulants, work harder for longer and if that doesn’t help, there are plenty more solutions for sale – different drugs,  more books to read, more courses, coaching and counselling to attend. But whatever you choose, shout for more! There will never be enough funding!’

I feel angry that our society has created a situation where people have become naïve and gullible to the profiteering of those who are already rich enough.

It is also sad that people with alternative opinions to the dominant biomedical models of psychiatry feel restrained from being open when wanting to share our thoughts, particularly when it comes to rational discussions about so-called ‘neurodiversity’.  It is particularly frowned upon to say anything that is perceived as negative by those who consider themselves inclusive, ‘woke’ to the tee. I have survived many, many years of stigma and discrimination at the hands of the psychiatric system, and continue to advocate for better healthcare, yet when I provide an alternative opinion, am I to be considered ‘ableist’?!

While we have little control over the influences that have led to this mass delusion, I hope that as a society it’s not too late. I hope that we will not put all our faith in illness or disability, nor in doctors or their treatments. I hope that together we will listen out for the tactics of those who profit from our distress. Of course, medical care has made great strides in treating certain physical conditions. But healthcare systems like the NHS cannot be expected to make people wise, happy or fulfilled.

For most of life’s problems, I think it’s important to believe that we really are enough. While there are times when it may be possible to change our circumstances, there are equally many times when it is us who needs to change.  While we can lean on one another in an open-minded and accepting community, it remains vital that we recognise the potential within us to grow with our suffering, to become wise and lead others to do the same. And despite everything going on around us, including the frustrations and serious concerns of mass delusions, we may yet discover just how beautiful and wonderful life is, and in doing so may even dare to call it happiness.

What does consent mean in practice?

A ‘lived experience’ perspective

This blog was first published by Mad in the UK https://www.madintheuk.com/2025/05/issues-of-consent/ on 15/05/25

It follows some of the issues raised in my recently published memoir ‘Unshackled Mind; a doctor’s story of trauma, liberation & healing’. 

Apparently, I consented to ECT. Apparently, I consented to psychosurgery, when I had part of my brain ablated in 2001; the operation was called a ‘bilateral anterior cingulotomy’. When I came to challenge this, I was told that my consent was valid because I should have known exactly what was going on as a qualified doctor. As a result, I have no legal comeback to any of these procedures.

But I disagree. After all, I had been sold a bunch of lies. I had been told repeatedly over several years, that I was suffering from a brain disorder – variously described as a chemical imbalance or ‘something structural’ which had apparently caused me to have ‘treatment resistant depression’. I was influenced by the hierarchy, the consultants and professors who knew better than me…….after all, I was just a junior doctor, a mother with children. I was just a woman and I had not completed years of postgraduate training or researched all the papers – how was I to know?

On each and every occasion that I agreed to any sort of ‘treatment’, I was told that it would make me better more quickly, and more often than not, was necessary to save my life. I wanted to get better, of course I did. And throughout these years as a psychiatric patient, I was prescribed a cocktail of drugs which I took religiously at first. Why? Because they told me they were vital and if I stopped them, I would get worse.

I was in such a state of internal agitation and yet my world didn’t feel real, a strange inability to show emotion, a horrible feeling of being locked in by the numbness and so sedated that even reading, and every physical movement felt effortful. I now believe it was the effects of these drugs that led to this state of tortured misery, and all the while my thoughts were caught up in petrifying, paralysing cycles of negativity. I was terrified, utterly terrified that what I was experiencing could get worse than the torture I was already experiencing. So of course I couldn’t stop the drugs.

There came a time when I tried to rebel. Tired of the treatments, tired of living in the nightmare, I resisted admission to hospital, but I was in the psychiatrists’ thrall, they controlled me and then I had no choice – I was sectioned, detained – legally I had to be injected with depots, I had to take the drugs. I was watched to make sure that I swallowed the mixture of pills and capsules. But to be honest, I wouldn’t have resisted taking the drugs, because I was so frightened by the psychiatrists’ narrative – that I would go further downhill if I stopped them. The terror was so real. I find it hard to explain just how scared I felt.

If this wasn’t bad enough, I was being bullied -some of the nursing staff kept telling me that the reason I didn’t get better was because I ‘didn’t want to get better’………..They said, I wanted to be in hospital. Why would I want to be held captive, away from my family, with others who were also in various states of agitation and distress? None of it made sense.

It felt like I was back at boarding school, and once I was legally captive within their hospitals, it felt as though I was on trial.  I had to prove to them that I wanted to get better and I had to do everything that was suggested and advised by my expert psychiatrists. I was doing my best to be a compliant patient, but life was hell. Life was a nightmare and whatever I agreed to, just made everything worse, but they insisted it was my broken brain that was the problem. These psychiatrists never, ever questioned their part in it, their treatments, their drugs, their attitudes……….No, my failure to recover was all down to me – my faulty brain, my weakness, my vulnerability.

To ensure that I ‘freely consented’ to the psychosurgery – which they called  NSMD (Neurosurgery for Mental Disorder), a fancy name to try and distance it from the old-fashioned lobotomies – I had to be interviewed by an independent ‘committee’. A committee who read my notes and talked to the hospital staff before they talked to me. The psychiatrist in charge primed me before I saw them– it was made very clear, that if I did not ‘freely consent’ then I could not have this surgical intervention which was my LAST chance of gaining a partial recovery. It was the ‘LAST resort treatment’ and I was told that if I continued the drug regime and had CBT after the surgery, I might – just might, get to live at home again. By then I was permanently sectioned and had been in hospital for over a year. At the same time, the committee were told that if I did not have this surgery, I would very likely die.

My consent was so freely given that I couldn’t even remember what had been done to me after the surgery.

Yet it had already been shown that I was in such a state prior to the surgery, that when my cognitive function was formerly tested, the result was that my performance was in the bottom 10% of what was expected.  Not to mention that my memory was shot to pieces by the ECT, some of which was given to me without my consent, under a section of the mental health act. Moreover, through the sedation and other effects on my brain function caused by the cocktail of drugs……….I was certainly not in my right mind that is for sure!

So, of course the psychiatrists had my life under their control. They made decisions, I merely said I understood and signed my name. They deny coercion, but how can that be the case, when I had been lied to? There was no truth in any of their assertions. I did not have any brain disease. I was being poisoned by their drugs, my brain was regularly being damaged by maintenance ECT and the night before the operation, a junior doctor came to ask me to sign the consent form. The following day I had two pea sized portions of my brain deliberately destroyed all because I thought they were telling me the truth. No, not all because of that – I also agreed because I was so utterly miserable that I thought I owed it to my family to be seen to have tried everything – they never asked me about that. I had decided that after the surgery, I would find a way to take my life. I was determined that this time I would succeed.

I know I’m lucky to have survived it all. I’m lucky because after all these assaults on my brain, things could be a lot worse. I’m amazed at the human body’s resilience. It’s perfectly possible that I may yet, have more physical problems as a direct consequence of what they did to me. I know that now’s the time to be grateful for the life I have, and I must make the best of the unknown time I have left.

But what they did to me, has had profound repercussions – not only was my life ruined but by extension, it ruined the lives of my family too. They didn’t consent to what happened to me. None of us did. And none of this was necessary.

If only I could turn the clock back. If only I had followed my gut instinct and said ‘NO’ to the first antidepressant, and the second……None of this would have happened. I would never have become agitated, sleepless, desperate, suicidal. I would never have been admitted to a psychiatric hospital, given ECT and ended up on the cocktail of drugs which rapidly then became a continuous pattern only differing in where I would end up and what drugs I would be prescribed. But, at that time, there was no discussion about the harms of psychiatric drugs – and today in 2025, antidepressants are still being labelled as ‘safe and effective’.

What a disaster. But they are not sorry. They are not willing to listen to my side of the story. They still think they know best as they repeat their errors using human beings with lives and families as their victims and their guinea pigs. These arrogant, dangerous fools whose interests lie in further propagating their falsehoods, trying to convince the world of their wisdom. I believe they will be found out, and I hope it’s sooner rather than later as more and more of us speak out. We, the survivors, who despite them, summon up our courage to speak from the heart as we mourn the many for whom it is too late. Some died by suicide, and we are told that it was a result of their ‘illness’, others are recorded as deaths by ‘misadventure’, still others suffer the catastrophic metabolic effects of the drugs, and their premature deaths are said to be ‘natural’– what a joke. They died as a result of toxic manipulation of their normal brain chemistry by drugs, prescribed by doctors. This is not natural, nor is it suicide, surely this is state sanctioned murder.

Boarding school & the female perspective

When I talk about genders within this article, I refer to the binary states of boy/man/male and girl/woman/female, purely because at the time of writing, this was the division which primarily determined the type of school in which boarding school children were educated. There is no intention to diminish or disrespect anyone who identifies in any way other than the stereotypes described in this blog. Similarly, this article in no way seeks to diminish the terrible experiences that children the world over endure when assaulted by adult care givers.

At long last we are seeing attention being paid to the issue of boarding school, and the harm done to children who were sent away, often at a very young age, to be educated away from home. Yet even in this space, many women are concerned that there is a very gendered bias towards the male experience of those who survived boarding school.

Rightly public attention is being paid to the fact that boys were so often cruelly beaten, physically or sexually abused, within the closed environments of boarding schools. Undoubtedly girls were also sexually abused, and all of these victim-survivors deserve to have their voices heard and the perpetrators brought to justice.

But it is clear that many women are unhappy that their bad experiences of growing up in an all-female environment of a boarding school goes unrecognised and is often dismissed purely because it seems way less dramatic than the narratives around child sexual or physical abuse. While I have no wish to cause offence to the leaders and pioneers of the boarding school survivors’ movement, I cannot help but sympathise with the many female ex-boarders, who say how they feel ignored and misunderstood. But this leads onto the question, why is it hard to listen to these women and why is it that these women feel unheard?

However one of the problems in taking a stance on ‘gender’ differences, is that there is potential to potentiate the male – female divide, and also alienate those who do not want to identify in the cis-gender space. Also I do not want these conversations to expand any sense of victimhood, when the path to healing is to restore and empower all people who identify themselves as boarding school survivors.

Having said this, I believe there is some merit in examining the female perspective of those who have had a boarding school education.  In the context of our British culture, it is not altogether surprising that the opinion and views of women in this arena has lagged behind that of our male counterparts. Most of the public schools originated as establishments for boys, created to fulfil various roles that served the state, and we still live in a predominantly male driven society, a legacy of generations who believed that only boys should be educated, and that leaders should be men. The fact is that even when girls were recognised as being worthy of an education, the female boarding schools that came into being were few in number and considerably less prestigious. Yet, for the past 50 years, girls have also been sent away to boarding schools by their families in increasing numbers, and they too had to find a way to survive within these anachronistic and misogynist institutions.

When the plight of boarders was first brought to public attention, pioneers like Nick Duffell did not know or understand the ways in which girls also suffered, and people still remain ignorant about the experience of young women who spent their formative years in boarding school.  Duffell’s original healing workshops existed only for male ex-boarders, until women contacted him and asked for help themselves. While there are many more co-ed boarding schools now, the majority originated from single sex boarding schools for boys. But whether girls board in single sex schools or not, their experiences are undoubtedly different to that of the boys.

Boys at boarding schools have been routinely subjected to physical abuse including corporal punishment in far greater numbers than girls, and it is possible that they may have suffered from more sexual abuse too, (although the absolute evidence for this is lacking). But there is still relative ignorance about why female survivors are no less traumatised especially when their experiences seem less ‘dramatic’ and do not satisfy the criteria for popular, sensationalist media coverage.

In exploring this, it is important to understand that boarding schools were microcosms of society, where girls were also being trained in roles which satisfied the order of the day. There are very few famous female boarding schools, just as there is no ‘old girls club’ in parliament and no favours to women as a result of the ‘old school tie’. While women were ostensibly being sent to these establishments for education, often academic success was not quite as coveted as in boy’s schools.

 I attended two all-girls boarding schools between the ages of 9-17. Perhaps ironically the first school was more ‘academic’ and we were streamed and encouraged to do exams early. But despite the expensive fees, subject options were limited. I was transferred to the second school when my parents realised that I was unhappy, but this school did not make life any better for me. This school was smaller and there was only one class for the whole year group. Many of the girls were doing CSEs, a less challenging exam to the then ‘O’ levels. The numbers in our lower six class had dwindled as girls would be sent away to ‘finishing schools’ or were there to re-take exams. By the upper sixth, there were only six of us left to do ‘A’ levels. If my memory serves me correctly, only two of us went on to university.

When I first arrived at this school, I could not understand how or why these girls were boarding when their homes were so close by.  I was a first-generation boarder, having been sent back to the UK to school because my father was a diplomat, and the government paid for my school fees. When some of my new classmates discussed ‘coming out’ as debutantes, I had no idea what they were talking about.  On reflection, I can see how these girls were still very much under the influence of upper-class society, which saw women as attractive accessories to successful husbands. Despite the fact, that our culture was beginning to change, boarding schools were still steeped in this binary view of the world. Women had their place, but always in a supportive role, at the side of the male leader.  

It is therefore no surprise that boarding school set about breaking our spirits, making us submissive and malleable. But unlike boys, the penalties meted out to girls at boarding school were not usually physical.  When we failed to comply, our punishments were shame-based, and it was all too easy to shame little girls. It was not just the absence of kindness, compassion and understanding that took its toll.  Command, control, shouting and snide remarks by the adults in authority as well as derogatory comments on our appearance and character undermined our self-worth. The red pen in our exercise books, the public humiliation when our misdemeanors were brought to the attention of the school…..It didn’t take much to bring our self-esteem crashing to the floor. By our nature and upbringing, girls were given more leeway to show our emotions in the home environment, and crying might be considered a normal response – but not for us at boarding school. Crying was a sign of weakness. Crying could draw attention to yourself and therefore to the bullies.

Literally overnight, when we arrived at boarding school, we were expected to conceal our feelings. Boarding school was no place for tears and there was no place for anger either. We were little girls who had been abandoned into the care of strangers to whom we had no emotional attachment. We were expected to conform, dressed exactly alike in our uniforms, hair tied back, given the same food to eat, timetabled to sleep at set times, even changing our underwear on designated days. We wore a second pair of knickers – over-pants to make sure that when ‘the curse’ came, there would be less chance that embarrassing blood stains would show.  Our changing female bodies were not discussed and when our breasts started to develop, the need to wear a bra became part of the competition. Our sexuality was never part of the conversation, and as we became teenagers, our desire for a mother figure, which had been missing from our lives was easily confused as a desire for intimacy with older girls, or for sex with boyfriends.

We did not know that we missed our mothers as we struggled through period pains, fluctuating moods and our confusion. We only had each other, and that was supposed to be enough. My own sex education came from the 9- & 10-year-olds in my dormitory on my first night at boarding school, when I was asked whether I knew where babies come from. The only time I ever heard an adult talk about sex was during one biology class when I was 14. I remember how as a class, we embarrassed the teacher by asking her what an orgasm was. Poor Mrs S blushed crimson and mumbled a few words – there was never any mention of the word clitoris.

 Bullying was very useful to the staff and matrons alike. It did much of their work for them. The older girls taught the younger ones what was expected of them, and then the bullies ensured that the school pecking order stayed in place and that any girl who attempted to voice a dissident opinion was silenced. Girls were expected to be demure – fights were primarily verbal, laced with passive aggression. Being ‘sent to Coventry’ and ignored by the rest of the class was commonplace, as was malicious gossip, taunting and teasing. There were so many unwritten rules that we learned to live by at boarding school. To complain of feeling ill would earn yourself the title of hypochondriac, to show your longing for home meant you were weak. You were required to kowtow to the popular girl and ignore those who were outside her favour.

The dormitory itself carried its own fears, because you could never get away – there was no privacy and no one to confide in. We became emotional islands, without any comprehension that we were not unusual or that all our classmates were likely suffering too. Instead, having learned to hide our feelings, we survived. We knew how to wear a mask and our problems as adults arose because we did not know how to take it off.

We were not a band of ‘sisters’ at school, because there was a fierce competitiveness between us that went under the radar, unspoken. We had to learn how to be our individual selves in subtle ways. It didn’t ‘do’ to boast, or to clamour after success. Unlike boys at boarding school, we weren’t being taught to ‘lead the country’ or take up positions of power. Perhaps as a result we didn’t develop the sense of entitlement that so many male boarding school survivors describe. Rather we learnt how to make alliances to survive, and that would serve us well when we found the perfect husband and could bask in his limelight.

Maybe it’s true that boarding schools turn out independent adults, after all as girls growing through adolescence without the guidance and help of a natural community, we had become very self-reliant.  We learned to cope with many things alone and in silence. I’m sure if a woman were to go through childbirth in an environment of all female ex-boarders, she would bear her labour pains with a minimum of ‘fuss’.

I have heard many female ex-boarders state that they hate being in all women’s groups. It triggers memories of school common rooms, dormitories and classrooms. It is hard not to be suspicious in such groups, unsure of who to trust, worried that all those old fears of being excluded or othered, would once again befall us, when all we really want is to leave it all behind.

Of course, some of what I have described is bound to have occurred in day schools too, but there was no escape for boarders. Girls whose parents lived overseas were in the worst position of all, some only going home once or twice a year. How could we possibly talk to our parents about our hopes, fears and dreams or receive meaningful adult counsel from them. When I hear how ‘things have changed now’ – children at boarding school have mobile phones, or they go home more often than we did growing up – I want to believe this is true. I hope that boarding schools have improved their hiring of staff and have matrons who show compassionate care to their young charges. But I still have to ask the question – can an adult who does not know you, who was not there from the moment of your birth and who has the responsibility for a number of children in the same position, really take the place of a loving parent? Does being on the phone, adequately replace the physical presence of a mother or a father – the love, the physical touch which all young children should be able to access when they feel the need?

So when I hear statements to the effect that girls at boarding school had a ‘better’ time because they avoided the physical abuse that boys received, then my response is that we are not in competition. We must salute the courage of all children who have survived the consequences of years continuous stress, emotional neglect and abuse. I respect our collective strength, courage and dignity.  

But every child, no matter what happened to them, has their own story to tell. Whether they have deep wounds or long-lasting trauma, they must be listened to, and allowed to express their anguish and their tears, because it is clear that validation of their experiences is the first step towards healing. What I have written in this article, may be very different from what you have experienced. Please feel free to share how it was for you.

I conclude with this opinion. I believe women or girls who have survived boarding school have equal right to have their experiences heard and validated. They should not be forced to receive group help in all ‘female’ spaces, if they believe that is not what will help their recovery. It is important that the whole boarding school survivor community come to understand the sensitivity of this matter to those who have felt excluded, and become willing to embrace diversity not just in terms of gendered spaces but also in the different modalities which take us further on our journeys to recovery.

Unshackled Mind: A Doctor’s Journey of Healing and Resilience

Published by The Book Guild on 28th February 2025

Available now from all bookshops, WHSmith and Amazon.

U n s h a c k l e d M i n d is a story of hope and resilience, written by an A&E doctor who endured years as a psychiatric patient, diagnosed with treatment-resistant depression.

Cathy’s life has been a constant battle, marked by frequent hospital detentions, episodes of suicidal thoughts, and self-harm. Despite psychiatry’s best efforts to treat her—including numerous medications, electroconvulsive therapy (ECT), and even brain surgery—these interventions only deepened her suffering.

However, through profound self-discovery, she uncovered the true causes of her emotional turmoil, sparking a transformative shift in her mindset.

U n s h a c k l e d M i n d outlines her extraordinary journey to freedom and the remarkable healing that followed.

Cathy Wield was born and raised overseas before returning to the UK for her education. She has spent most of her career as a doctor, specialising in Emergency Medicine. As an author, she has written and spoken extensively about her experiences as a psychiatric patient and continues to improve care and offer hope to those suffering from emotional crises.

‘A Moving and Powerful Story we all need to pay attention to’


JOHANN HARI
N E W YORK TIMES
BEST SELLING AUTHOR

‘A Truly Remarkable Story by a Truly Remarkable Woman’

SAMI TIMIMI
CHILD & ADOLESCENT PSYCHIATRIST