Psychotropic medications are a contentious subject. There are a lot of vested interests involved. The interests I care most about are the people who are prescribed these drugs.
I took a number of psychiatric drugs, in a variety of combinations, for a long time. I don’t take any psychiatric drugs at the moment. If I thought it was in my best interests I would take them again.
Two things about psychotropic medications really concern me – people having decisions made for them about taking psychiatric drugs, and people not getting full information before they start taking these drugs.
I suspect there are a lot of people in Aotearoa/New Zealand who don’t know a lot about psychiatric drugs even if they think they do. I don’t believe that people know that some people are literally forced to take them, and that others are subtly forced to take them.
I don’t think people know that our community dies up to 25 years earlier than the rest of the population, and that one of the main causes is psychotropic medication. That means a Māori man who uses mental health services could die by 48 years of age and a woman from a Pacific nation by 53 years. Those are horrifying numbers about people. All parts of the mental health system have to start treating people who use mental health services, and neuroleptics/major tranquillisers, benzodiazipines/tranquillisers, selective serotonin reuptake inhibitors/SSRIs, monoamine oxidase inhibitors/MAOIs and all the others, with a great deal more respect.
Due to a variety of physical health experiences I’ve been nearly dead, or should have been dead, a number of times. Clearly I’m still here. I’ve wanted to be dead a number of times, but I’m still here. I say this because I think my starting point with my experiences of madness and psychiatric drugs were that they were things to deal with and get over. That had been my experience of the health system since birth.
When I got told I was officially crazy my first response was ‘how do I beat this?’ and I struggled to believe that I had a lifelong ‘mental illness’. Back in those days I believed mental health workers when they said ‘mental illness’ is an actual thing. I also believed that psychiatric labels were scientific diagnoses, not vague categories, so I got reading about them. You probably can’t imagine my shock at the information that I’d be taking psychiatric drugs until I died!
At this point you might have realized that I wasn’t going to fully accept that prescription.
My experience of psychiatric drugs has a certain amount of privilege built into it. I was working in a professional role when I became officially mad, I have a tertiary education and my life experiences have set me up to fight for myself, every time. I also had the advantage of being able to afford to engage private psychiatrists. There’s a certain amount of power in paying psychiatrists for their services, even if I knew they could get me locked up if they felt they had a legal obligation to do so.
Fortunately for me I have worked with four psychiatrists who showed me respect and consideration, and I know that is the privileges I outlined working for me. Another privilege I have is being pākehā. There is institutional racism operating in mental health, from the Mental Health Act down.
There are four groups of people here who can prescribe these drugs – psychiatrists and GPs, and also some nurses and pharmacists. That’s a worryingly large number of people. That they can force people to take psychotropic medications by law, by implicit threat or by withholding knowledge is awful. I wouldn’t want to be responsible for prescribing the side effects of psychiatric drugs, and I worry that not all these people understand or accept that responsibility. PHARMAC does a great job negotiating with the pharmaceutical industry so our drug prices are really low. It doesn’t mean that psychotropic medications are straightforward or without consequence.
Some of the psychotropic medications I’ve taken are lithium, arapax/paroxetine, olanzapine/zyprexa lamotrigine/lamictal, quetiapine/seroquel, and aripiprazole/abilify. For side effects some of the medicines I’ve been prescribed are benztropine, propranolol, folic acid and thyroxine. For withdrawal symptoms I stuck to codeine and panadol if it was so bad all I could do was cry.
I don’t have the happiest psychiatric drug withdrawal story. I know people who’ve had a really painless experience and people who found it unendurable so they keep taking psychiatric drugs. Again, I had the privilege of being able to endure it and get through it. A lot of people don’t have the time or support needed in their lives to do this. And there are people who have been taking these drugs and don’t want to know about side effects or withdrawal effects. Each person’s life is their own.
Withdrawal is one of the bits of information that doesn’t seem to make it into prescribing conversations. I don’t know if that’s primarily because prescribers actually believe psychiatric drugs are necessary, if they don’t know about withdrawal because there’s so little research, or if it’s some other reason.
Based on my experience I think it’s irresponsible not to make withdrdawal a core part of prescribing conversations. That opens the question of how prescribers get the information necessary to have these conversations if there isn’t significant research of our experiences. They have to listen to us, and some prescribers find that difficult. There’s nothing like being able to dismiss the people you’re supposed to be working for because they’re nuts.
Weight of numbers may make a difference, 299,958 people collected a prescription for ‘antidepressants’ in our country last year. That included 14,780 children. How many of these people were told about the difficulties so many people have in reducing their prescription, let alone stopping taking these drugs? Are these children expecting to be taking these drugs for the rest of their lives? What is the message that is sending?
When I decided to talk to the psychiatrist, GP and psychologist I was seeing at the time about reducing the dosages and number of psychiatric drugs I was taking I did not have a firm end goal of not taking anything. I liked the idea, but I had talked to enough people and read enough to know that it might not be possible because of withdrawal effects, or because the life I wanted to live was supported by taking the drugs. I have a generally dim view of the phrase ‘full recovery’. I have an exceedingly dim view of declarations that ‘full recovery is only possible if a person is psych drug free’. Thanks, but people can make up their own minds on what their best life is.
The psychiatrist, GP and psychologist were all supportive, if cautious, about drug reduction. I’d done my research so my starting position was to reduce dosages of any double ups, and so reduce the number, and to go back up if anything started to get wonky. I knew immediately stopping any of them was fraught with real dangers, and I was prepared for things not to be all smooth sailing.
The main thing to read if you’re thinking about reducing or stopping psychiatric drugs is Will Hall’s The Harm Reduction Guide to Coming Off Psychiatric Medications.That’s the link to the ebook, and there’s a link to the audiobook on the Places page of this website as well . A video I wish I’d been able to watch before I started on my reducing process is this presentation by Olga Ranchman at the ‘Pharmaceuticals – Risks and Alternatives’ conference last year which talks about the return of emotions after they have been chemically suppressed. I read plenty of material that confirmed it was a good idea to take as small an amount of these drugs as possible, but I found people who’d been through it themselves provided far more valuable information. There’s a fair amount of information online, my question before I read too far is – is this someone talking about their own experiences, or is this someone telling people what their experiences should be?
When I finally stopped taking all psychiatric drugs, and it did take years and I did go down and back up and down again in dosages, I had a really scary realization. I worked out that despite everything I had heard, read, and said there was a tiny part of me that actually doubted that I could live a good life without taking any psychotropic medications. Some part of me was concerned that I would go haywire if I wasn’t taking anything and my life would go every which way again.
What surprised me so much about this was that I am happy hearing voices and smelling things other people don’t. I don’t have any problem feeling my emotions expand and withdrawing for a time, pacing the backyard and crawling under the covers, or whatever is needed. I see these as natural processes that are for me to experience. I know I will have learnt things about myself, and my world, as I move out the other side of whatever extreme state I may experience. There is privilege of knowledge in this. I’ve rejected the never proven notions that my brain is broken, my chemicals imbalanced, or that I am ‘sick’.
And that’s why I was shocked to realize that a little of bit of me was questioning if I needed psychotropic medication. It meant that some part of me had held onto the story I have heard so often, and hear everyday through other people, their language choices and what they say about us. I was a psychiatrically labeled person and I needed to be managed by drugs. It was really upsetting to know how deeply that story had been embedded.
It raised the question – if part of me believed it, what of those people who had never spent time with our community and all our stories and resources? I know we face prejudice and discrimination on a daily basis so it’s not surprising that after 44 years some of it had gotten into me. It also made me wonder about all the other people being prescribed psychiatric drugs, how many have a small part that says something similar?
I also asked myself what having that belief meant for me. It was a hard thing to think through but I felt it needed some sunshine. My conclusion, for myself, about my own belief, was that it told me I was less than other people, that there was something inherently wrong with me and that I needed to be treated as a somewhat broken thing by both myself and other people. As a belief it’s not something I’m proud of, it speaks to me of entitlement and shame. Yet I’m not uncomfortable to have found this thought. It confirms for me that I was right to reduce and stop taking psychiatric drugs because they caused me to feel less than myself. I wonder if that is part of the reason I was so keen to try reducing my dosages, because another part of me understood that it was important for me being able to live the life that at this time I consider is best for me.
One thing happened through the entire process that has stayed with me, and I believe it always will. About a week after my last neuroleptic (aripiprazole) dose I felt so overwhelmingly bad I can’t describe it. It lasted for about two weeks, that first time. In the middle of it I sat across a table from Mary O’Hagan and asked her if I was being too principled, if I was cutting off my nose to spite my face, would I be better off taking a small dose to make the awfulness go away? And Mary looked at me with her calm Mary face, and said in her warm Mary voice “you’re doing great, just keep going”. Some people reading this will have heard that story before. I cannot tell you how much it meant.
When things are really bad there is nothing like someone who has been through something similar confirming your experience and supporting your choices. I don’t know if I would have stayed off neuroleptics if it wasn’t for Mary’s words that day. I am so pleased I have because it has been part of a process of becoming the person I am today, and I like who I am. It was the right choice for me at the time, it is the right choice for me now, and tomorrow or next week I may make a different choice. Whatever choice I make it will be from a strong sense of self, and that is my greatest learning from engaging with mental health services.