Editor’s Note: This article is being simultaneously published on our affiliate site, Mad in the UK.
There have been several excellent blogs published on MITUK/MIA outlining the results of the largest international survey of ECT recipients asking about their experiences. I read each one of them with interest but found myself becoming utterly horrified all over again as I gained new insights into my own lived experience.
Between 1995-2001, I had over 100 ECT ‘treatments’ and then I had another 10-12 further ‘treatments’ during a six-month period in late 2006.
When I first became a psychiatric patient, I was a junior doctor. From the end of 1994 and for years afterwards, my medical background if anything put me more under the thrall of the biomedical model of psychiatry, and I believed what the psychiatrists told me. They were specialists in their field, senior doctors; I respected them and believed what I was told when they claimed that I ‘needed ECT’, that ‘it saved my life’ and that the ‘memory loss was a good thing’. They told me I was one of the sickest patients they had ever encountered with ‘treatment resistant depression’.
I absolutely dispute all those claims now.
It is true that I did indeed become very, very sick. I was extremely unwell, but I now believe that all of it was as a direct result of the many psychiatric ‘treatments’ imposed on me after I had reacted to the first antidepressant (Prozac) that I was ever prescribed by developing suicidal thoughts. Within 24 hours of my first admission to a psychiatric ward, I was persuaded that I needed ECT. I was told that it would make me better much more quickly than drugs alone.
I was terribly distressed, absolutely bewildered and desperate to get back home. Against my better judgement, I agreed to ECT. The very first ‘treatment’ also spelled the first sign of serious trouble. I was left paralysed as a result of the ‘muscle relaxant’ suxamethonium given to me as part of the anaesthetic for the ECT and I had to be hand ventilated with a bag-valve-mask until my body managed to metabolise the drug—it turned out I had a rare genetic deficiency of the relevant enzyme the body uses to breakdown suxamethonium. But despite the continued risks, it didn’t stop the repeat ECT treatments.
I look back now with horror. Why didn’t they simply stop? Why didn’t I simply say ‘no’?
I realise that it is very hard for me to remember exactly what happened. My memory for the times during which I had ECT are definitely patchy and I don’t know what I don’t know. That’s the trouble. I cannot even fight my corner now, because I simply cannot return to those times because the memories simply do not exist. I have been set up to be gaslit and my medical record gives no credence to what little I can recall about my experiences of ECT.
However, I do know that during the years I had ECT, I lost important, good, wholesome, family memories—but I only know about the memory loss for certain specific family events like birthdays and weddings, because it is impossible to tell what else was erased. The psychiatrists said my memory loss was a good thing, but they wouldn’t say why—other than their general paternalistic opinion that there were times during my ‘illness’ that are ‘best forgotten’.
It is only decades later having met fellow patients who were hospitalised with me, that I discovered I had also lost memories of people. One such friend knew me well. Years later, despite every prompt under the sun, it is as though she doesn’t exist in my earlier life while I was having ECT. I have experienced the reverse of the same phenomenon with another friend of mine, who after ECT no longer recognised or knew me. We have had to start from scratch. What right did the psychiatrists have to decide whether or not losing my memory was a good thing?
Apparently, I signed consent forms, but what was I consenting to? I certainly cannot remember signing them let alone being told about the adverse effects. I do however remember that I was repeatedly reassured that ECT was a good thing to have, and that it was helping. I also remember that in my mind, the only good thing about it, was knowing that I would have some respite from the hell of my torment, albeit for the duration of the sleep whilst I was under anaesthetic. That was—until I wasn’t.
As years went by, my condition became worse not better. The deterioration was undoubtedly fuelled by the ridiculous number of psychiatric drugs, and the constant chopping and changing of drug dosages (usually as increases). The drugs increased my suicidal thoughts, and I started acting on them, and then inevitably I was sectioned (detained on a psychiatric ward), and when I tried to refuse ECT, a ‘second opinion’ doctor was called in, and I was subsequently given ECT against my will. During one of these sessions, the anaesthetist was clearly not paying attention and managed to give me just the paralysing agent, without the drug that induces anaesthesia. I lay awake on the narrow trolley, unable to call out or draw attention to what was happening—it was absolutely terrifying. The next thing I knew, it was over and I had the usual headache, as well as a red, swollen hand, where the intravenous cannula had failed.
The hospital admitted that my claim of being awake for the ECT session was true—but there was no apology, although they did pay for me to have privately funded EMDR to help me ‘get over the trauma’.
Then it was back to more ECT.
The psychiatrists resorted to ECT every time I was admitted to hospital, which was often. It was easy for them to coerce me into agreeing to this treatment—I know that. I had discovered the hard way, that if I disagreed, they would give it to me anyway. Furthermore, I was already being accused of ‘not wanting to get better’ simply because I did not get better—so rather than cause a fuss, I signed the consent form.
I didn’t like any of it and I did not like having ECT. I was saddled with a huge number of adverse effects from the multiple psychiatric drugs including extreme inner turmoil, internal agitation, as well as the nightmarish anguish and misery that plagued my daily life. I hated hospital. I just wanted the nightmare to end. Of course I was coerced—I knew the consequences of refusal, and I remember clearly being told that refusal was futile. I also remember my desperation to feel better and the repeated statements from the psychiatric team that ECT improved my mental state. In addition to all of this, I was being bullied by certain members of the nursing staff who repeatedly told me that the reason I didn’t get better was because I wanted to stay in hospital. If I refused any ‘treatment’ on offer, it played right into their narrative.
My life, my circumstances and the situation all felt so hopeless. I wanted to be a ‘good patient’ not a nuisance. I felt I must be a patient who the doctors liked otherwise they might give up on me like they had on so many others. Of course I wanted to get better! I was trying my hardest to get well, and that meant that most of the time I was very cooperative, and I was certainly easy to coerce. All I really wanted was to get out of this ghastly nightmare.
After each ECT session, I was very confused. I didn’t know where I was and even when the confusion lifted, I couldn’t remember what I’d done in the previous few days or even where I’d put my belongings. I wrote notes to myself so that I could find things like my nail clippers! Normally I love reading but I couldn’t read, as my concentration was so bad and the decline in my general level of functioning was such that when I was allowed home, I was allocated a daily carer to help with household tasks. It was only in reading the results of this survey that I realised that this was all another manifestation of the damage done to my brain by ECT.
Eventually, the psychiatrists decided that I needed maintenance ECT and so it was scheduled regularly twice a week. By this stage I was permanently hospitalised, and I learned later that even the doctors had lost hope of my recovery. It was then that the suggestion that I have psychosurgery emerged. But the fact that I even agreed to be assessed for invasive surgery on my brain becomes more comprehensible to me now, when I think about how I was functioning at the time. As part of this assessment, a neuropsychologist formally tested my cognitive function, and I was found to be functioning in the lowest 10% of that expected for my age. It was in this state, that I was apparently giving ‘fully informed consent’.
Every symptom which is detailed in my medical record I now know, was very likely an adverse effect of the many psychiatric drugs I was prescribed, and each was explained away as an indication of the severity of my depression. Likewise, my cognitive decline, repeated falls and inability to concentrate were described as symptoms of my ‘very serious, severe, treatment resistant depression’. There was never any suggestion that they could be the result of the repeated assaults on my brain from the deliberate electric shocks strong enough to cause a seizure, regularly, on a twice weekly schedule.
At the same time that I was undergoing regular ECT, I was also forced to take the drugs prescribed to me. These included the same drugs that are given to people who suffer from epilepsy in order to prevent them from having seizures. Heaven knows how much higher the voltage of the electric shock had to be to provoke a seizure under such circumstances.
Honestly, I had not even considered this aspect to the irrational, illogical and non-evidenced prescribing from our most senior UK psychiatrists—until I read the recent paper from this international survey written by Lisa Morrison et al.
I have written a memoir Unshackled Mind which details my recovery and journey out of the decades of psychiatric treatment and in it I describe an event that happened in 2017 when I was well on my way to disillusionment with the biomedical model of psychiatry. At that time I was working at a homeless centre when a client assaulted me and I sustained a head injury. I was tapering off my psychiatric drugs but not aware of the many withdrawal symptoms. Perhaps this was the reason that I did not recover more quickly from the head injury, but it led my doctor to request an MRI of my brain. What I did not realise at the time of writing the memoir in 2024, was the significance of the results of this scan.
Although ostensibly it showed that I had not sustained any major injury from the actual assault, the report described evidence of ‘white matter changes’ which could be indicative of a number of causes including repeated trauma. While it was easy enough to rule out the other causes, the doctor and I were both worried about the significance of these findings. Since I had had many previous MRIs both before and on a regular basis after the psychosurgery in 2001, I knew that there were previous results available for comparison. So, I attached the new MRI report to an email and sent it to the lead psychiatrist who had been responsible for my care, and asked if he could supply my doctor with these records. However, it took more than nine months to even get a response from the psychiatrist, and when he finally persuaded the hospital radiology department to send copies of the MRIs, they could not be downloaded. No comparisons ever took place.
When I finally did get a chance to speak to the psychiatrist concerned, he told me that many of the patients from the neurosurgery program also showed similar changes on their MRIs and they thought it was artefactual and so I need not worry. The only advice I was subsequently offered was not to smoke and to make sure that my blood pressure was well controlled.
However, since reading more about the adverse effects of ECT as a result of the research carried out by John Read et al, it seems no consolation at all given the fact that the other patients, the majority of whom are women, would also have experienced repeated ECT—no wonder our MRIs all showed similar changes!
Clearly, psychiatry would rather not shoulder any responsibility for the potential damage to my brain, or anybody else’s either.
So I have to ask myself, what now? Do I remain concerned? The answer is that I do, but I cannot turn the clock back. I can only hope that there will be no more lasting effects from the repeated assaults on my body.
When I look back to what I endured in the name of psychiatric treatment, I am amazed that I survived at all! Admittedly I continue to experience sleep difficulties and have had symptoms of small fibre neuropathy since I stopped the last psychiatric drugs in 2018, yet my neurologists don’t seem interested in attributing causation to previous psychiatric treatments. But I think I am very, very lucky to be living as normally as I do now and the good news is that once I stepped away from psychiatry, I got my life back and emotionally I am better than I have ever been.
I cannot change what has happened, but in telling a small part of my story, I hope it will make a difference. I hope the tide of public opinion will turn so that collectively psychiatry will be made to stop these terrible, barbaric assaults on their patients, and others will receive better, responsive, appropriate care for their very real emotional pain and distress.
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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.