The use of medication in mental health services is a hot issue. Despite the paucity of evidence supporting its long-term efficacy, critiquing the use of ‘antipsychotic’ medication can be felt as a personal attack both on those who use it to manage distressing experiences and those who prescribe it. Those of us who question psychiatry’s relationship with medication may be be dismissed as ‘Pill Shamers’ or branded as irresponsible and dangerous voices by those who are convinced medication is the only way of treating someone’s ‘illness’. The debate can feel like a fight between two intractably opposed sides, giving the impression that we must either be ‘for’ or ‘against’ medication. Unfortunately the information and space needed to explore our complex relationship with medication – as practitioners and people – is in short supply, making the concept of informed choice a bad joke.
Over the next two years, I’ll be working alongside Rob Allison, Adam Jhugroo & Phil Thomas (two critical mental health nurses and a critical psychiatrist) to bring together a range of contributions from people who have successfully taken control of their use of medication, either by withdrawing completely from it or finding a reduced dose that works for them in a book called ‘Coming Off?’. In this blog, I hope to share some of my own experiences of medication as a way of explaining why I’m excited to be involved in this initiative.
Meet the ‘Match-Maker’
The year is 1998. I’m sat in the office of a psychiatrist – a nice man who is patiently trying to determine the source of my distress. I’m anxious, my eyes are fixed on the floor and I’m trying to work out if he can help me. He seems OK, but given that I have an alien hiding inside me I know that appearances can be deceptive. My dad, shell shocked by this girl sitting next to him in the space his daughter used to inhabit, listened carefully as I poured out my reality and placed it at the doctor’s feet. I’d been keeping it secret for years and desperately wanted someone to save me. It was at this point that the doctor smiled reassuringly and told me that it was OK. He said that he not only knew what was wrong with me, but that it was quite common for young people my age and that he had some medication that would make me better. He told me that I just needed to come into hospital for a while and they’d get me back to university in no time at all.
In relationship terms, this is akin to being taken to a dating guru when you feel desperately lonely and have given up your happily-ever-after fantasy of meeting your true love. The guru, backed up by years of experience in turning around the lives of countless loveless souls, ignites within you a tiny ember of hope as they tell you that they have found ‘the one’ you’re looking for – the one who will complete you. Your friends and family look on, relieved that there is finally an expert on hand to fix a problem that was weighing on their mind.
This is how I was ‘match-made’ with The Meds. That night, on the ward, I was handed a measuring cup with a tiny pill inside. Part of me was worried that this was a trick – a set up. Its screams to ignore this reassuring stranger were promptly silenced by a louder part that simply wanted an exit from this downward spiral I was falling through. So, with a deep breath, I swallowed the tablet and waited for my salvation.
The First Few Dates
My first date with The Meds was a non-event, as was my second, third and fourth. The only thing I noticed was that I felt dazed and struggled to keep my eyes open at times. My voices were still in full flow, and I still felt hounded by the aliens. If not for the reaction of everyone else around me – the doctors, nurses and my family – I would have given up then and there. Despite the initial lack of chemistry, people said we were perfect for each other. They listened to my reservations, but implored me to give The Meds a proper chance.
It Must Be Love
Sure enough, a month or so later we started to hit it off. I remember one day my parents came to visit me only to stare, open-mouthed, as I drank from a can of pop without painstakingly examining it for signs of tampering. Over time the voices began to fade into the distance and I felt less bothered by the aliens. The nurses told me I had a spring in my step and no longer seemed like the tortured soul they met on admission. It was clear to everyone that I had found my soul mate, my missing piece – The Meds.
I Never Promised You a Rose Garden
All relationships have issues. As the ‘honeymoon’ phase ends, we often become aware of our partner’s annoying habits. Snoring . . . leaving the toilet seat up . . . the way they always seem to forget their money when you go out for a drink . . . if the benefits of the relationship outweigh the drawbacks we might file these issues as ‘endearing quirks’. The ‘quirks’ I gratefully accepted included extreme sedation, weight gain, lactation, diabetes, oculogyric crisis and akathisia that left my family feeling sea-sick as I rocked from foot to foot. If questioned, however, I would not acknowledge anything more troublesome than slight sedation. I felt lucky that I had been introduced to The Meds and I wasn’t going to do anything to jeopardise that.
Settling Down for Life
8 months later, I was finally discharged from hospital with the understanding that I must stick with The Meds for life, no matter what. I quickly settled into the routine of picking up my weekly dossete box full of pills (by this time I took 12 tablets a day of different kinds). I got used to going back to bed after each dose to sleep off the worst of the sedation. I was existing, not living, but I reasoned that this was the best I could expect. I had internalised the belief that I was a severely ill schizophrenic with a chemical imbalance that only The Meds could help.
I Hate You, Don’t Leave Me
At some point, things began to shift. The sedation, the feelings of detachment, the mind-numbing fatalism of the prospect of taking these pills for every single day of my life . . . all the ‘quirks’ that I’d gratefully accepted early on in our relationship began to grate. Still, as disenchanted as I was I knew that we were tied together forever as I had fully swallowed the belief that medication was the cornerstone of my sanity. So, instead I’d flirt with the idea of breaking free. I’d miss the occasional dose, or ‘forget’ that I hadn’t taken them for a while. Without fail, this resulted in a string of admissions where I’d have an emotional reunion with The Meds, facilitated by the medical staff, and promise faithfully not to stray again. Unable to acknowledge or articulate my ambivalence, I repeated this loop over 20 times. Each cycle served to solidify the medics’ beliefs about my ‘illness’ and my parent’s sense of dread at me ever stopping my medication again. It felt like a matter of life and death.
Over time, things settled down and I fully accepted my fate. Paradoxically, it was this acceptance that helped me move beyond The Meds and get the life that, eventually, helped me break free. It was slow and complicated, but the cliff notes include meeting the Hearing Voices Network, volunteering, finding an amazing housing project (Network for Change), gigging as ‘Rai Studley’ on the Leicester music scene and meeting some amazing people who believed in my potential and refused to give up on me. The stories of survival and resilience I heard within the survivor movement caused me to question the relevance of labelling extreme distress as ‘severe and enduring mental illness’. In short, I started to embrace connections with others rather than fear them. Through these human relationships, I began to see myself as a human being with a story to tell – rather than a walking bag of pathology and distress.
In 2007, I was offered a job as the manager of the London Hearing Voices Project, at Mind in Camden. The working world came as a shock to my meds-addled system. 9:00 am meetings and the lack of naptime took their toll. Outside of work I mostly slept and it was clear that I needed to make some changes if I was going to keep the job that I was beginning to love. Against medical advice, I began to withdraw from the Venlafaxine and develop some flexibility in the way I took the rest. On days where I needed to be alert and up early, I’d set my alarm for 4am and have a few hours to recover after taking a reduced dose. It wasn’t perfect, but it was do-able alongside my partner’s morning ritual of pouring coffee and porridge into me in between snoozes. Over the next year my dose crept down and I found I had a little more energy to cope with the day.
During this time I wasn’t consciously moving away from The Meds – I was moving towards the real and tangible things in my life. To push the relationship analogy a little further, it’s akin to a stage where you’re both living separate lives in the same house. You have your own friends, your own interests and rarely talk. A combination of my deep-seated belief in my own illness and the lingering ghosts of multiple hospital admissions stopped me giving up on The Meds completely. I was scared of going backwards and losing myself again.
The Final Straws
Every doomed relationship has a breaking point – mine had two. The first was reading an article by Joanna Moncrieff that indicated long-term neuroleptic use was linked to reduced brain volume. As an imaginative person, I could feel my brain shrinking as I read her words. Confronting the potential long-term damage my years on medication may have caused was frightening and harder to dismiss than the short-term effects I was used to minimising.
The second came when I sat down with my husband, that evening, and became aware of feeling disconnected from the person I loved with all my heart. It was as if there was a thick glass wall between us and I didn’t know how to break through to the other side. I was there, but not there. In this moment, the meaning of Moncrieff’s use of the term ‘emotional detachment’ hit home and I realised that The Meds formed a buffer between the world and me. I decided, then and there, that the cost of this buffer was far too high. I wanted my life back.
Together, bearing in mind all the people I knew who’d successfully withdrawn from medication and the information I’d read, we decided to take it slowly. I came off the Quetiapine first, sticking with a bit of the ‘mood stabiliser’ to help me sleep. Then, after taking my final pill I remember having only a couple of hours sleep and waking up to a meds-free life full of energy for the day ahead. My husband had a shock when we woke up to find his usually over-sedated wife sitting up in bed looking at him, with wide eyes. This signified a new chapter in our lives together. He’d only ever known me whilst I was on medication – so the sedation was something that was deeply woven into his mental picture of me. Over the first month post-meds he had the opportunity to get to know a different Rai – someone who felt much more alive and vivacious than the girl he’d wed. It was as if I’d finally let go of a concrete filled backpack that I’d been carrying around for a decade mistakenly believing it was full of feathers. I felt free.
Aside from having to learn how to sleep meds-free, things went smoothly for the first few weeks. Then, one day, the earthquake hit. Three of my most critical voices returned and, unused to dealing with them, I self-harmed for the first time in years. The floodgates opened and I was soon beset by 10 other voices, body sensations and visions. I could feel things crawling around inside me and memories of long supressed trauma returned. I felt raw – it was as if I’d not only put down my concrete-backpack, but also lost my protective suit. I remember, one morning, sitting in a coffee shop reading the newspaper only to feel physically sick as the suffering of the world threatened to overwhelm me. My relationship with Joel became strained as we struggled to adjust to my new-found feelings and intense vulnerability. It was a difficult time for us both.
Early on, I made the decision to be open with my psychiatrist unless I recognised the familiar signs of imminent ‘sectioning’. So, after avoiding a string of appointments during the withdrawal itself, I went to see my psychiatrist and explained what I’d decided to do. I wanted to show them that it was possible to come off medication successfully, but a small part of me also wanted their approval (yet another toxic relationship that I needed to re-think). Unsurprisingly, the appointment didn’t go well. The SHO, whilst initially reassured by my rational-sounding explanations, seemed overwhelmed by her own anxiety when the appointment ended. She followed me into the busy waiting room firing questions at me, checking whether I’d ever been in trouble with the police or hurt anyone whilst ‘psychotic’. The next day she called, as instructed by the consultant psychiatrist, to bring me in for a formal risk assessment. My anxiety levels spiked as I researched the Mental Health Act and recognised that the ‘nature’ of my ‘illness’ meant that they could deprive me of my liberty if they chose.
The medical microscope I found myself under was too much to bear without my protective suit. During the risk assessment, my voices screamed and I began to feel that people were reaching into my head, psychically, to surgically alter me. My mind felt like it was always open, as if these people kept forgetting to sew up the wounds they’d created. Exposed and violated, I could feel my thoughts leaking out to anyone and everyone around me. I felt lost, unable to hold on to any thought or idea, sitting vacantly waiting for someone to tell me what to do. Joel, having never seen me in this state before, felt as if he’d lost his wife. I was almost unrecognisable.
Crawling My Way Back
Joel was a lifesaver during this time and, without him, I would have given in to the pressure to go back on the medication. All of the chats we’d had about dealing with voices paid off and he was able to help me develop some pragmatic coping strategies. I started to listen to Deftones (my favourite band) as a way of exercising control over what leaked out of my head. Instead of feeling that people in the street were being bombarded by my innermost thoughts, I was sure that if I concentrated on the music then they would simply hear some great tunes. Every time someone nodded their head or smiled was evidence that they enjoyed the vocal stylings of Chino Moreno too. I found that Tai Chi formed an excellent barrier against the psychic brain surgery. Whenever I felt people reaching into my head I would do some of ‘the form’ and start to feel centred and whole again. It was quicker, and more effective, than a dose of Haloperidol.
Little tricks like this helped get me back to work, despite still feeling targeted. The difference was that I no longer felt like a passive victim, but had some tools to protect against it. As my confidence and sense of security grew, I began to be more able to hold on to my thoughts. Every day, I kept a diary of the unusual experiences I faced in order to help me make sense of them rather than react with fear. It wasn’t easy, but the tide was turning. I was starting to find a way of living without meds, rather than simply existing.
Living My Life
Over time, as my experiences grew less intense, I regained my ability to see them as symbols rather than concrete facts. Recognising the voices, visions, emotions and body sensations as signposts to unresolved trauma, I sought out a therapist who would be able to help me make sense of it all. 18 months after my last pill, I finally began to feel like I had a handle on things. My husband and I decided to run a workshop on our journey at the World Hearing Voices Congress and, in preparation for this, we spent a week reflecting on our experiences as we walked across the width of Scotland (something I could never have considered whilst on medication). During this walk, I realised that I’d viewed The Meds as my arch nemesis, a powerful enemy to overcome in order to get my life back. Looking back, I was mistaken. The Meds were not my enemy, they were merely a plaster that obscured and dulled the problems that led me into such a toxic relationship in the first place.
Re-thinking my relationship with medication involved recognising the good parts of this relationship, as well as the bad. The Meds helped dull my emotions, keeping my traumatic memories safely tucked away and out of mind. They helped me sleep; giving me some respite from the voices I was unable to listen to. Most of all, they helped me feel like someone out there knew how to fix what I felt was deeply wrong with me. The Meds were a promise that, eventually, it was impossible for anyone to make good on. So, up in the Scottish Highlands I finally started to understand that coming off medication wasn’t the end of my story – it was me picking up where I’d left off a decade before.
Taking my last pill was like going through the gate of a protected, but deeply uncomfortable, paddock back out into the world in all its intensity. Making sense of this world, and finding a way of living in it, is the hard part. It’s also something that I relish. In many ways I approach this life like an enthusiastic child, cramming too much into my days because I’m acutely aware of the years that I’ve already missed out on. I’m still healing from the trauma that both led me into the psychiatric system and resulted from my ‘treatment’ within it, and this healing thing is hard. Even on the difficult days I am clear that this is MY life, MY pain and MY joy and it’s MY right to experience it directly.
Coming Off? The Book
In reading this, I hope that you’ve seen that for me – and many others – the meds-issue goes way beyond debates of their efficacy and safety. I have a personal and complex relationship with medication that is inexorably linked to the personal and complex relationships that others have with it too. The foundations of this relationship were laid long before I took my first pill, and each interaction with others’ beliefs about medication helped to shape my own. Had I never met people who had successfully questioned their relationships with medication through the Hearing Voices Network, I would never have considered the potential for me to question mine. In society, we are so tied to the idea that ‘mental illness’ (especially ‘schizophrenia’) is caused by a chemical imbalance that the need for a chemical treatment seems self-evident. To question this questions the assumptions that many still hold about the nature of severe distress – and opens up a can of worms that we may feel ill-equipped to deal with. The legal framework that strips people of the right to make an informed choice about medication also helps protect society from facing this can of worms head on.
The ‘Coming Off?’ book, for me, is about redressing the balance. We have all heard the horror stories of what can happen when people stop medication suddenly. Many of us don’t have access to the positive examples of people questioning and taking charge of their own use of medication – whether they come off or reduce their dosage to a level they feel comfortable with. We don’t often hear of the doctor who supported someone in this process, or the way friends and social networks can step up and be there when they are most needed. We don’t always hear how someone experiencing rebound psychosis can find a way through this, or how the physical impact of medication can last years beyond the final dose. Everyone who has trod this path has a different story – there is no one-size-fits-all. This book, I hope, will collate a range of experiences to help others think about their relationship with medication and make an informed choice about how to move forwards.
Want to share your story?
We have already had our first wave of recruitment for people willing to contribute their experiences, but will be looking for more contributors again in the summer. If you’d like to find out more, please email [email protected], see https://www.facebook.com/comingoff or download our Coming Off? Book Flyer.
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Of further interest:
Rachel Waddingham, manager of the London Hearing Voices Project, discusses her personal experience with Hearing Voices groups during an interview at the 2012 World Hearing Voices Congress in Cardiff, Wales.
“Voices Matter”, from the Open Paradigm Project.
Great article. Thank you.
“Those of us who question psychiatry’s relationship with medication may be dismissed as ‘Pill Shamers’ or branded as irresponsible and dangerous voices by those who are convinced medication is the only way of treating someone’s ‘illness’. The debate can feel like a fight between two intractably opposed sides, giving the impression that we must either be ‘for’ or ‘against’ medication. ”
IMO, it ‘feels’ like a fight between two sides – because it *is* a fight between two sides.
IMO, these things would put an end to this fight:
1) *Fully* informed consent – the good, the bad and the ugly
2) The end of the use of force without due process
3) Making sure people are aware of alternatives and their right to choose them
Then, the people left taking these drugs would be fully-informed adults; without force, who opt to take them after considering other options. If we do this,the fight goes away…
Because we have not, the fight *continues*…
And because we have failed to do these things, I am *proud* to say I am *against* psychiatric drugs – not only for the ‘Russian roulette’ style in which they are prescribed and taken; but also because of the broken one-size-fits-all medical model behind these drugs. and the fallout of this model on individual civil rights.
“Russian roulette is not the same without a gun.”
Hi Duane, thanks for reading and sharing your thoughts. I agree – fully informed consent is essential, along with the end of forced meds and the availability of alternatives. There is definitely a need to take a stand on this, I guess where I sit is trying to fight the wider issues whilst trying to create open spaces for dialogue so people can explore their own options. The balance is a tricky one, though, I think. I remember a time when I went to a ‘Is Psychiatry for Sale?’ conference when I was still very tied to the meds. I left feeling so angry that Jo Moncrieff and co challenged the evidence around the efficacy of meds. I felt invalidated and it just served to make me cling more tightly to the idea that they were perfect. One of the reason I love ‘thinking about medication’ peer support groups is their open attitude that gives space for people to think about their use of meds (and the wider context) no matter where they sit on this divide. I figure we need to approach this from all kinds of angles until things finally change. Thanks again, Rai 🙂
I’m very happy to read about yout story and success. Thanks for sharing it.
For me, Psychiatric diagnosis and treatment is all about long term illness.
I was glad to get away from them.
Rachel, I agree, though I like the term, “Making Sense of Medication,” groups.
I think there is space for both peer support groups around this and also for more radical protesting voices echoing J Moncrieff and others.
People need better guidance on these drugs, partly based on thier individual experiences, partly based on wider experiences, and also on the best scientific evidence.
The wider community also needs strong campaigning voices so we can end the tyranny of drug company racketeering and psychiatric oppression.
Seroquel: at 25 mg per day and less can increase eye pressures, and cause irregular heart rhythm.
Depots modecate and depixol can trigger suicide, I’ve had two attempts.
Mellaril has a half life of 21hrs and can build up in the system.
That’s a lot of really horrible and worrying effects of the medication. I’m lucky in that I’ve not had suicidal thoughts/feelings triggered by medication – but have met those who have. Finding out good quality info about meds is a real challenge. I like https://www.rxisk.org to look at the kinds of effects other people are experiencing. It can be a frightening list, though :-/
Hi John, Yes – we need lots of different spaces and approaches to address the major issues in the way these meds are used in the psychiatric system (and in the way the system / society deals with distress or difference in general). In the UK, as well as in the US, there are some great active groups that are really pushing for change. We need the academics challenging the research perspective. We need people to share their own experiences with/without meds (the good, the bad and the downright scary). We need people like Bob Whitaker, who tour relentlessly to bring that message to as many people as possible. I think we also need people like the Open Dialogue crew showing that alternatives are possible. But it’s not all about those who get the airtime – we also need those people who, in their day to day life, challenge or questions decisions that are made about them or the people they support.
Peer support groups can give people the space they need to think through how these issues relate to them, and make their own sense of it – but without information and resources those discussions are missing something huge.
Rachel, your analogy of taking meds with a co-dependent relationship is brilliant and spot on, imo. Congratulations for making the break. Indeed, healing from the effects of such a relationship is complex and takes time, but I did it, and I know everyone can. It is the nature of life to heal and move on from that which has harmed us.
I love what you say here:
“Taking my last pill was like going through the gate of a protected, but deeply uncomfortable, paddock back out into the world in all its intensity. Making sense of this world, and finding a way of living in it, is the hard part. It’s also something that I relish….Even on the difficult days I am clear that this is MY life, MY pain and MY joy and it’s MY right to experience it directly.”
I came off cocktails of meds after 20 years, and it was one of the roughest parts of my life journey. I had no support with this around me, from mental health world, and that made it especially rough and lonely. They all wanted me to go back on meds. I refused, and eventually found the support I need in alternative healing communities, where healing is based on spirit and energy.
And I’m so happy that I did this. It’s been over 10 years now, and I’m perfectly clear and grounded now, creating my life in the way I most enjoy. I feel a lot of love for life now.
After coming off the meds, which initially caused my blood to feel as though it were fire, I had to re-build myself from the ground up. I took the Jungian journey through the dark night into light, fighting my way through the jungle of madness and fear. It was quite bumpy and, at times, disorienting, but it allowed me to experience many of life’s mysteries and miracles in a way that I could own and, eventually, understand. Main thing I had to clear out of my head and heart was the idea that something was inherently ‘wrong’ with me, and that I was no longer of any value to society. That was the most damaging message of all, and from within the mental health system, this is what had been communicated to me, repeatedly.
In my healing, I learned how to separate from and discard those inner voices. They were not mine to begin with. These are just plain lies, and it is so damaging and self-defeating to believe them. I’m thriving now, in health, life, and love, thanks to once and for all, seeing the forest for the trees. The big picture is so different than what we are led to believe when seeking support from current mental health practices. At least, this has been my experience.
I’d consider contributing my story to your book, but I’ve told my story in detail so many times, that I’m a bit tired of doing this, as I have gone way past this by now, and I don’t really enjoy revisiting it, other than to know that it is all behind me and that I did it. Healing occurs in layers, and I went through every last one of them until I felt completely myself and in perfectly sound health and clarity. My health and life transformed as a result, and this does give me great joy.
Although I do love the idea of what you are putting together. Your story is courageous and revealing, as are those of others who have left all this meds crap behind. I believe what you are doing will have great impact on all of this, and feel very supportive and encouraging of this project. My very best wishes to you, and for this project!
Actually, to be honest, what I’m tired of in telling my story is when people try to poke holes in it. I’ve been somewhat demeaned in many ways for the healing I did (another pitfall), and to me, that is unacceptable. Perhaps I have one more layer to heal, here, come to think of it. I’ll consider it and let you know privately as per your email above.
Hi Alex, thanks for sharing your experiences. I think your story sounds very inspirational and I love that you were able to find the support you needed in alternative healing communities. It’s fine if you don’t want to contribute to the book – we’re all way more than one aspect of our experiences, and telling/re-telling stories can be exhausting when sometimes all we want is live in the ‘now’ not the ‘then’.
I kinda think stories are amazing and personal things, but also that telling them does sometimes leave me feeling fragile. It can be like putting part of your life and show and waiting to see how others respond to it. As someone who’s had much disbelief/invalidation – there’s a part of me that’s always waiting for the attack. As I’m on my own healing journey I’m starting to feel less raw and exposed with all this – but it’s not always easy.
If you do decide to get in touch, that’s great. But it’s also fine if you decide not to contribute to the book. As you said, healing is in layers – but doing what works for you where you’re at is a good thing. I do feel strongly, though, that we should never try and poke holes in others stories/experiences. That sounds like a very invasive way for someone to respond to someone else’s truth. I’m well aware my own personal truth chances and grows as I do, but that doesn’t mean I need/want people to impose their perspective on mine.
Rachel, your response is so gracious and resonant, that I feel very supported in this. I have a feeling this came at just the right time for me, and will further support my personal growth and integration, so I will take a leap of faith, here. I have emailed the above address to request more info. Thank you so much for your inspiration and encouragement. Alex.
Hi Rachel – Thanks very much for sharing your story. The title really made me laugh. I really admire your writing here and your interviews about your experience and work with the HV network. I don’t like to revisit my personal experiences / horror stories with psych drugs much, but this did make me remember a funny story. I tried to think back to the absolute first time I took them. I was in hospital circa 1990 and I was 15. I went to the nurse and complained about “the crazy woman who kept following me around every day telling me I had a chemical imbalance in my brain.” Turned out she worked there.
“I went to the nurse and complained about “the crazy woman who kept following me around every day telling me I had a chemical imbalance in my brain.” Turned out she worked there.”
Thank you for the laugh, Cataract.
Wow 🙂 Thanks for sharing that, it made me smile.
Doctors and perhaps priests (ministers) are given special privileges by society, and this is powerfully impressed on us as children. Many of these persons have even a special tone of voice–the voice of authority. Possibly children think this voice to similar to God’s. Thus, someone who might be skeptical of the truth told by someone in old clothing and unshaven will swallow the biggest lies told by men and women with the special role, title, voice, office, etc. These can be trusted we are led to believe. It is almost instinctive, intuitive, automatic. We just obey without thinking. I might add that the show of wealth helps to impress this on us as these men and women generally have wealth or some equivalent. And guess what? corporations know this better than anyone. And they use it to beguile the public. Hence, the millions swallowing stuff not fit any one or any creature. Literally slow poison. Thus just as one dangerous authority, the Church, is set aside, a new even more evil one has taken its place.
Thanks Rai, this is a really great story, well told, and the “relationship” metaphor is awesome.
I also like the way you described how convincing it can be about the “need for drugs” when there are multiple episodes of getting off the drugs in a haphazard way and then just ending up back in the hospital. In the past in seminars I have used Rufus May as an example of someone with a number of relapses before he got off successfully, but it seems you went through the revolving door quite a few more times – I will probably be telling your story in seminars in the future!
Thanks Ron 🙂 Yup, I definitely got stuck in that revolving door many a time. Feel free to use my story as you see fit – if it helps, then yay! I hope the book, when it’s eventually completed, will give you a whole range of stories/experiences to share.
One thing, though, is that when I finally came off meds (and since then too) I’ve had lots and lots of things that would officially be called ‘relapses’. I’ve come to reframe them and see them as learning experiences. Every time there’s something that is very difficult to deal with, it teaches me something that I need to learn/understand. It’s a cliche, I know, but I guess it’s about me seeing it as a breakthrough rather than a breakdown.
Good luck on your book. My story is different than yours because I didn’t have any problems, other than the common adverse withdrawal effects from a non-“safe smoking cessation med,” initially.
Then these adverse drug effects were misdiagnosed (according to the DSM-IV-TR), due to my PCP’s desire to cover up her husband’s “bad fix” on my ankle and my ex-pastor’s desire to cover up the sexual abuse of my four year old child, according to all my family’s medical records.
I ended up becoming psychotic and getting evil “voices” in my head two weeks after being forced to take a bad drug cocktail of Seroquel, lithium, Voltaren, Ultram, and Risperdal. And my doctors at the time were grotesquely unethical and / or completely delusional. They were incapable of comprehending the words, “Your drugs are making me sick and giving me voices.” And they thought the best way to cover up this problem was to try to murder me via anticholinergic intoxication poisoning.
But absolutely, I relate to your crawling analogy. I’m an artist, and did a soapstone carving of myself crawling, when I was being made psychotic with the anti psychotics.
How embarrassing for me to have to admit I used to think pastors and doctors were respectable and trustworthy, AgniYoga. And how sick my ex-religion is still colluding to cover up the fact I was misdiagnosed based upon lies from my ex-pastor and the people at whose home my child was abused because Bishop Hanson didn’t want to “pay” me. I had asked him for help in finding a doctor who could medically explain how I’d been made sick, not for payment. Shame on the ELCA synod headquarters for not assisting me, after defrauding my family out of millions in cash and profits from services rendered claiming they are a Christian religion.
But some decent doctors and nurses did eventually become disgusted by this intentional poisoning, so I was eventually weaned off the drugs. But no doctor was willing to admit or explain to me that I had been being poisoned. I had to research medicine myself in order to be able to explain to subsequent doctors how and why I’d been misdiagnosed and poisoned. What a sick joke main steam medicine has become due to their acceptance and belief in psychiatry. Shame on the medical wall of silence.
But I did also suffer through the drug withdrawal induced super sensitivity psychosis, and that is makings of an interesting story. I was awakened to the reality that I could tell the story of my life and dreams in the lyrics of music. And it’s a love story, supposedly between me and the man who is supposed to “come in the night like a thief” “singing a new song.” God works in mysterious ways. Who knows?
I was force medicated initially because I felt God was inspiring a story, now I have an interesting story. I was force medicated initially for belief in what the “Christian” therapist called the Holy Spirit “voice.” Denial of the Holy Spirit is the only unforgivable sin in the actual bible. I do now have concern for the souls of all those who utilize psychiatric stigmatization and psychiatric drugs to cover up the easily recognized iatrogenic artifacts and sodomy of children. I don’t think such unrepentant crimes against others will be something Jesus will be giving a free pass on.
I’m quite certain the god complex doctors and pastors, who think they have a right to defame and try to murder others, are a much greater threat to humanity, than is a Christian women who has a love story about being one among the bride of Jesus. My belief that Jesus loves me, “something from childhood and the church” was not the actual etiology of my “bipolar,” as the idiot Jew who created anticholinergic intoxication in me, claimed.
It is my legal right in the USA to believe Jesus loves me. And it is illegal in the USA to try to murder people for belief in the Triune God. But apparently the psychiatric industry is under the delusion that the laws of my country do not apply to them. It’s against my religion to offer forgiveness to those who have denied the existence of the Holy Spirit. I trust God will, in His time, treat all as they have treated others. I do not believe defaming people with fictitious diseases and torturing other human beings with chemical lobotomy drugs is a wise profession to be in.
Hi. Thanks for sharing your experiences. It sounds like you have been through so much – and you make a really important point abut how some beliefs are deemed unacceptable/pathological – but idea that we can or should medicate people because of beliefs they have against their will seems (to me, at least) like a really strong and damaging belief in itself.
I agree, especially since I was drugged for belief in the “Holy Spirit ‘voice'” and “God,” according to my medical records. And we have a First Amendment, I believe it is, that states forced poisonings due to belief in the Christian Triune God, are illegal in the USA.
Two things the psych establishment held against me after my diagnosis. One was that I believed in good and evil. The other, according to them, was that I had “the sexuality of a twelve-year-old” at 23.
I’m sure they wouldn’t have liked it either if I had been a hyper-sexual sociopath…With the psych establishment you just can’t win. That way they can prescribe more drugs!
Wonderful article, and thanks. I am curious. How did you manage to avoid being sectioned that last time? Everything looked like it was headed that way.
Hi Rossa, that’s a good question. In all honesty, I’m not sure. I spent a number of hours speaking to colleagues (I know some psychiatrists and it was helpful to check out with them what they thought less progressive colleagues of theirs would do in this situation), speaking to legal helplines (in the UK we have a Mind Legal Advice Line which is really useful to check out legalities) and even searching through NHS policies on using the mental health act in cases like mine. It was really worrying as, even if I wasn’t struggling with voices/experiences they could have legally sectioned me because of the ‘nature’ of my supposed-illness. On top of this I was very distressed because of the voices and my thoughts leaking out of my head. Sectioning me would have been a doodle in many ways.
So, how did I avoid it? Partly it was me and my husband speaking before the appointments and making a commitment to not push things if it became obvious that they were amping up to a mental health act assessment. There are certain questions they tend to ask, and I recognise them – so we agreed that if push came to shove we’d both lie and say that I’d take the medication and Joel, my husband, would say he’d make sure I did. Luckily it didn’t come to that, but I think what saved me from the sectioning is that I had Joel with me and he was able to articulate his support for me, but also to reassure the psychiatrist that he would call them if I got ‘worse’. They felt like they had an ally in him, which reduced their worries of risk. I guess I helped, too, by really making an effort to be ‘reasonable’ and not get too angry/frustrated at their questions. This was really hard under the circumstances, and took a huge emotional toll after the appointments – but it was worth it. The threat was there for quite a while, and I think that’s what made my post-withdrawal experiences so intense.
The lousy thing about this is that if I wasn’t as lucky as I am (in having someone to back me up an ease the psychiatrists anxiety) then I would probably have been sectioned. Scratch that, I’d have probably given up on coming off meds and gone back on them straight away. There was a LOT of pressure on me at that point. Being able to make an informed choice shouldn’t depend on us having someone there to back us up – that makes for a really unequal system.
Hi Rai, hope you’re doing really well, thanks for sharing all this and for all the work you do 🙂 It’ll be shared in my circles and your advice/suggestions will greatly help in further shaping my interactions with people, now and in the future.
It’s neat that you are coming up with non-medical ways to help people that hear voices cope with the world–ways that work better than the psychiatric model.
Many of us did have problems before psychiatry screwed around with our brains and nervous systems. (Mine were more of the mood swings and depression type.) The question is: does the bio-medical model work? It doesn’t seem too, except perhaps in a short-term way. Someone should write an article with a costs-benefits analysis of the drugs we are prescribed or have been in the past. I began to question psych meds even before reading Robert Whitaker or joining MIA.
It just seems illogical to take them. 1. Do they help us enjoy better quality of life? Short term, maybe. Long term, no. 2. Do they lengthen our lives like insulin or other drugs they have been compared to? No. They shorten our lives by 25 years on average. 3. Do they even prevent suicide? Research is showing that the answer to that may be no, along with preventing homicide and other dangerous behaviors.
In which case, I began to ask myself, why should I be taking my pills even if I am “different” from other people? It’s like telling people of darker skinned races that they have to artificially bleach their skin to look like Caucasians. Even if the bleach is toxic and shortens their lives while diminishing the quality significantly. Stupid and unfair.