This article first appeared in Mad in America (www.madinamerica.com).
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.
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.