This blog first appeared on David Healy’s RxISK website on April 3rd 2025. It is republished here with some minor alterations.
Harriet Vogt is a qualitative researcher with a particular interest in drug safety. She joined Shane Cooke and Mary Hennessey’s Prescribed Medication Withdrawal peer support group in Prestatyn, N Wales to listen and learn.
Shane Cooke and his ex-foster Mother, Mary Hennessey have been running an antidepressant withdrawal peer support group for a decade. Shane was himself badly injured by a toxic reaction to paroxetine which was misdiagnosed and mistreated. His purpose for starting the group was not bitterness – which would be perfectly reasonable under the circumstances- but a desire to give back, in the same way that he was himself .
Shane and Mary are wonderful, wise, empathic human beings – as indeed are all the members of their group – with whom I’ve now spent two evenings listening as they describe what the experience of long-term antidepressant withdrawal really signifies. And it couldn’t be more different from the commercially perpetuated myth – ‘antidepressant discontinuation is usually mild and short-lived’.
The members of this antidepressant withdrawal peer support group decided there was more to explore together after our first meeting. They wanted to dig deeper into their experiences of protracted withdrawal. Several fundamental questions that arose from our first meeting demanded a more probing :
How can best intentioned, good doctors, be so ALIENATED from us, their patients?’ And, as David Healy who originally instigated the formation of the group with Shane and Mary, asked – ‘how can we be so afraid of a caring profession that we dare not challenge them?’
Harriet’s Overview
As we all know in the prescribed harm community – even those of us who are unharmed – the medical system is disconnected from patients in antidepressant withdrawal by degrees of separation. There is a pharmaceuticalisation of medicine that indoctrinates good doctors – employing ‘evidenced’ guidelines based on ghostwritten trials more designed to boost returns on investment than patient safety.
It is literally depressing that those whom I have dubbed – ‘statistical lap dancers’ – are still focusing their research efforts on diminishing the perceived prevalence and significance of withdrawal.
Take, for example, the recent meta-analysis conducted by Jonathan Henssler et al (caps my emphasis):
‘Considering non-specific effects, as evidenced in placebo groups, the incidence of antidepressant discontinuation symptoms is approximately 15%, affecting one in six to seven patients who discontinue their medication.
Subgroup analyses and heterogeneity figures point to factors not accounted for by diagnosis, medication, or trial-related characteristics, and might indicate subjective factors on the part of investigators, patients, or both. Residual or re-emerging psychopathology needs to be considered when interpreting the results, but OUR FINDINGS CAN INFORM CLINICIANS AND PATIENTS ABOUT THE PROBABLE EXTENT OF ANTIDEPRESSANT DISCONTINUATION SYMPTOMS WITHOUT CAUSING UNDUE ALARM.’
Unsurprisingly, most of the studies reviewed were commercially funded.
Keeping the debate at the level of prevalence, emotionless numbers, bears no relation to the depth and duration of suffering endured by the members of Shane and Mary’s support group – and many thousands of patients across the world. The point isn’t politically motivated prevalence research gaming, but listening to and learning from patient experiences of withdrawal – how to minimise our physical and psychological pain. We are the evidence base – and the sample size is HUGE.
Withdrawal Voices
Close to the emotional surface amongst the group, there is a degree of well-founded disgust tinged with fear – that withdrawal symptoms will, as has habitually been the case, be misdiagnosed as a worsening of an existing or appearance of a new ‘mental health’ condition, leading to further medication or, at worst, inpatient psychiatrisation. What is the point of seeking help from professionals who know nothing, and neither believe nor pay attention to the experts in front of them – their patients?
Listen to T who is so astute, despite severe disablement from 5 concurrent drugs, related ‘low sodium’ health issues and valproate induced Parkinsonism:
‘Low sodium causes balance problems which I struggle with. It causes depression, cramps, lethargy – an offshoot of taking antidepressants and valproic acid. Every med I take can result in low sodium. You really don’t know what’s causing what in the end… I don’t find the doctors a great deal of help. I get worked up about it before I go. I’ve lost confidence in them – the whole thing with the mental health diagnosis – medication – being left on them for all these years – and they don’t know. The thing I want from them now is support and understanding of what these meds are doing – but they haven’t got it, they don’t understand, It’s pointless.’
Or , prescribed seroxat for 25 years, which made him so ill he had to live in a care home for 2 years, and now just surviving in isolated disablement at home:
‘It’s a living hell. I’m not going to the doctor, lost my trust in them a long time ago. I was taking seroxat for 25 years terror, terror, terror – behaviour problems, alcohol addiction. I was in a care home for 2 years – in a coma for 2 months, found unresponsive during covid and developed a grade 4 sacral ulcer. I tried to suicide because I couldn’t get off the paxil. On sertraline now –. can’t even think of tapering now, still in PAWS from seroxat…You just feel exhausted, defeated – like you’ve got nothing to give any more. Can’t really function – get out for a couple of hours like community centre – it felt as if never ending treadmill. On my own – it’s the loneliness, the isolation.’
There is a fatal emotional underpinning to the group’s feelings towards their doctors – BETRAYAL. They have been betrayed by one of the most universally trusted professions. Caught in an inescapable trap. Left in a state of absolute VULNERABLITY. Listen to S1, who at a time of terrible bereavement initially found venlafaxine helpful, but now 20 years on:
‘That’s where the lack of trust in doctors comes in because that’s who you should be going to get support and advice and of course they aren’t any help. I went recently and had blood tests for B12 and the GP said why don’t you increase the venlafaxine? That was her advice. I won’t be doing that! I thought I’d better not burst into tears, that just confirms her feelings…also BEING STUCK ON A DRUG YOU DIDN’T KNOW WAS DEPENDENCE FORMING – you didn’t know that – that’s pretty bloody depressing in itself. Angry, angry, angry! Terrified to do anything different but equally wanting to move forward. You want to stop this poison as quickly as possible but actually you can’t stop it quickly.’
A sense of having been CRIMINALLY BETRAYED. Listen to A2, another patient struggling to taper from venlafaxine, currently estimating, with a sinking heart, that it will take her about 8 years to ‘stabilise at 37.5 mg – if I can get there’:
‘If somebody injected me with heroin without me really knowing and got me addicted to heroin and I couldn’t stop, that would be a criminal offence and they’d be in prison – but my doctor has got me on something that I cannot stop and it’s ruined my life. But it’s not a criminal offence because he’s a doctor’.
As we talked together, a more profound source of patient alienation from the caring profession emerged. The way psychotropics, specifically antidepressants, are conceptualised medically, is completely at odds with our human experiences of taking these drugs – and struggling to withdraw from them.
Our experiences are not mechanistic reactions measured against the linear dimensions of rating scales nor discrete symptomology. But as S2, first medicated at 18 and having survived 6 torturous years of withdrawal, so clearly articulated it as- ALTERED STATES OF BEING, for which there is no existing framework for medical discussion. And, furthermore, another critical point, the symptoms are mostly invisible. BUT that does NOT MEAN ALL IN OUR HEADS.
‘I think one of the challenges as well – a lot of these things we are experiencing- symptoms, sensations – they’re OTHER WORLDLY…It’s very difficult to try and articulate some of these things that are happening’…you’re going to a doctor and you’re trying to get advice or tell them what’s going on and there’s no framework to be able to have these kinds of conversations…The real agony is that for so many people it’s invisible and you’re relying on somebody to try and paint this picture. People are living with this day after day, week after week sometimes for years.’
There is probably no clearer example of the existential disconnect between patients and our doctors than AKATHISIA. Described, for example in the Fluoxetine PIL as:
‘If you feel restless and cannot sit or stand still, you may have akathisia; increasing your dose of Fluoxetine may make you feel worse. If you feel like this, contact your doctor’
But, by those who have survived akathisia as – UTTER TERROR. Described by A2 as,
‘It feels like I’m sitting on an airplane, there’s going to be an air crash – and I know I’m going to DIE.’
Unlikely that a spot of restlessness would have driven beautiful young K, to sign a preventative agreement with a physician assisted suicide organisation.
It is disturbing that akathisia is still commercially packaged as physical restlessness. We know – and research supports our knowing – that physicality is but one dimension, by no means universal and eclipsed by the iatrogenically disturbed ‘neuroemotions’ of terror:
‘Exacerbation of hallucinations, anger to the point of violence, mania, disruptive behaviour, panic attack, acting out, suicide attempt or suicidal ideation and depression have all been reported as manifestations of akathisia.’
Group insights into the experience of antidepressants went deeper still. Drugs that affect the intensity of our feelings and sensations – some terminally as in the case of PSSD – are meddling with our essential being and identity. Once again S2 found the words:
‘I was put on it when I was 18 – very hard to make sense of who you are when you’ve been on something for decades and then you’ve come off. Deeper questions around sense of self, how do you feel your emotions?’
And giving the platform to LG – a remarkable, insightful warrior, despite having almost lost count of the number of times her iatrogenic reactions have been misdiagnosed as ‘psychiatric’:
‘THEY’RE JUST SO UNABLE TO EMBRACE THE HUMAN EXPERIENCE. If you’ve been on drugs of course you’re going to question your identity. I sometimes think who the hell am I? Are my reactions me – or is that venlafaxine speaking…Why would a doctor not think – why don’t they join the dots for us.’
This is the root of our alienation from good doctors, practising with the best of intentions. Human beings, known as patients in protracted antidepressant withdrawal, are being lost in translation. Our selves are being atomised into the disconnected bits of rating scales like the Ham-D and adverse effect lists in PILS.
This is why support groups like Shane and Mary’s are so vitally important. Their significance is not just the sharing of practical experiences of tapering. Not just extending a reassuring emotional embrace to those in desperate states of withdrawal. Their significance is that the human beings who are members of the group are able to reconnect with their true selves, to be able to discern which elements of them are distorted by withdrawal and where their authentic centre lies.
Until doctors prove themselves capable of, as LG said, ‘embracing the human experience’ of protracted antidepressant withdrawal, why should patients trust them?
Why are we so afraid to challenge the ‘caring profession’, asked David Healy? We are not so much afraid, as understandably resistant to avoidable obliteration of the .
As a group we concluded that – we are not so much afraid, as understandably resistant to the avoidable obliteration of the self.
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Mad in the UK hosts blogs by a diverse group of writers. The opinions expressed are the writers’ own.