Monday, December 5, 2022

Comments by Questioning

Showing 27 of 27 comments.

  • “A well timed and much needed article, but we need more such statements from more & more people with system “credentials.” Thank you again Dr. Breggin!”

    I agree but, also, I think those of us service users with “system credentials” (ie, those of us who benefited from positive interventions and are coming through the other side) need to speak out too, and let political leaders and service providers know exactly what worked and what didn’t work for us, and why. Psychiatry and mental health services aren’t quite as scary for some of us as they are for others, for various reasons, perhaps because of economic and educational privilege, or by accident of birth, or by virtue of what services are available in our home towns.

    I live in a country privileged to have a National Health Service that was largely driven forward by one very angry, working class man with a troubled childhood, who nurtured a “burning hatred” of the political ruling class of his day and allowed it to fuel the creation of a universal healthcare system that, for all its fragility, has served generations who would otherwise have been excluded from anywhere near adequate care.

    My local mental health service only exists because Aneurin Bevan was outraged by inequality, and relentless in the pursuit of justice. All of its staff owe their livelihoods to a man who, if he had been born in this time and place, might well have been put on a CTO and had sedatives delivered to his Welsh Valley home by a nice nurse wanting to help to “calm him down”. Lucky them and us that he entered politics and not a psychiatric institution during his angry youth….

    As the good man said himself: “The purpose of getting power is to be able to give it away”. And I think those of us within the system, in relative positions of power and privilege, have to decide for ourselves whether to cling onto our privilege for fear of reprisals, or to speak out in order to create a better future.

  • I’m so sorry and angry to think of you having to do this without support. The process is hard on the body physically, as well as emotionally.

    I struggled and gave up quickly the first time I tried to discontinue Effexor so, the next time, I took a planned three-month break between two stages. It gave me some breathing space and time to prepare for the last part, which is the hardest for most people, it seems.

    Tiny reductions over a long time seem to be helpful for those who really struggle, and even tinier ones towards the end stages. I tried to think of discontinuation as being a bit like fitness training. If you suddenly get up after years sat on the couch and try to run a marathon, you will burn out quickly (ask me how I know….. 😉 ) Small steps are more sustainable and tend to cause less damage, when you look at the reports of others’ experience that are out there.

    Remember there is no shame in taking medication in the first place, and discontinuation is not a race. You are already fabulous right now, and just as you are. The drug discontinuation is just a project that will take as long as it takes. It doesn’t define you. Your inner fabulousness defines you. Take really good care of yourself Rachel and know that people out here care about you and are rooting you on. xxxx

  • Fab article, thank you so much.

    “Fear of involuntary treatment hangs over the head of everyone labelled a mental patient. Going to a psychiatrist, or to other healthcare providers, exposes the already distressed individual to the risk of incarceration and forced treatment with little or no due process.”

    More than this though, in an increasingly ageing population that has not so far found a cure for the dementias and similar conditions, the possibility of involuntary treatment hangs over the head of every single one of us, whether we are aware of it, or fear it, or not.

    It is common and quite understandable that survivors of a minor stroke or TIA will report feeling afraid to close their eyes at night for fear they may never again wake up. Sadly, something far more sobering should be the possibility of waking up one day on a ward for the “elderly mentally ill” for one reason or another… but understanding around mental capacity legislation seems to be as locked away from mainstream society as is that section of our population that is being involuntarily detained under mental health legislation.

    I struggle to understand the justification of involuntary treatment for all the humanitarian reasons you articulate here but, really, there is also a significant amount of self-interest at stake here, if people will only wake up to the reality of what the ageing process may mean for them. Most people simply can’t or won’t imagine the possibility of the police coming to their door to escort them to a “place of safety”, but surely everyone has thought about how they would like to spend their retirement?

  • In the UK, the Samaritans organisation has a strict confidentiality policy. They will only pass on information without permission in a very few specific instances, including where reports of terrorism are made, where threats are made to their own staff, or in the case where a Court Order is made to release records.

  • “ADHD drugs are better than cocaine for getting high and focusing, with cocaine you have to keep doing it every 15 minutes but both methylphenidate and the amphetamine based ADHD drugs produce a nice focused high for several hours and that’s at the prescribed dose. The high is the focus. You can’t have one without the other.”

    I had an unsatisfactory trial of MPH for ADHD in adulthood, and they improved my focus but I didn’t at any time feel “high”. I guess there is a lot of individual variability and it needs to be explored, and potential patients need explicit information to guide their choices.

    I discontinued the use of MPH because of the appetite suppressant effect, and the “crashes” between doses. I don’t have any experience of using other stimulant drugs, aside from caffeine, so I don’t honestly know what a crash from a “high” would be. I didn’t actually “feel” any different, either emotionally or physically, while the ritalin was at its peak in my system. The only retrospective evidence that it was working came when I looked back at the end of the day and saw how much more engaged I had been with my daily activities. For me, the “crash” problem involved feeling intensely irritable and tired as the drug wore off, and so ridiculously hungry that it was nigh on impossible to make healthy food choices. I know a number of adults who take ritalin and report no ill effects but, over time, it became intolerable for me, so I quit.

    I really worry about the lack of attention given to understanding children’s own experiences of taking ritalin, and well, any drugs really. As an adult I have choice and educational privilege, and it was still impossible to make myself heard with the first doctor I saw. How do children stand a chance?

    And this:

    “They found that the risk for several non-severe side effects, including loss of appetite, sleep problems, and growth suppression, was 29% higher in those treated with the drug.”

    Non-severe? In whose opinion? I want to round these people up, restrict them to a diet of “nutritious paediatric milk shakes”, and sit by their bedsides and poke them with a pointy stick, every time they drop off to sleep at night, for a good six months or so. Then they might want to have another think about the use of “non-severe” in this context!

  • “Mental health law circumvents the constitution, and gives people an excuse to treat people in the mental health system as less than fully human. Problem. They are fully human, and because they are human, we should abolish the system that reduces them to a subhuman status.”

    I am in the UK, so can only speak with knowledge of our system here, but I would go further than this in our case and say that it is the (often wilful) ignorance of mental health law amongst healthcare leaders that is leading to the treatment of people within the system as less than fully human. The law offers far more protection in the UK than is actually afforded to most involuntary service users, and I really don’t know why so many are looking the other way while the law is being perverted under their noses.

    As context, I am a service user myself, and I take psychoactive medication in moderation and by choice. I’m utterly appalled that people more vulnerable than me don’t get to make their own choices, and I feel a huge burden to challenge the injustice and the misuse of public funding within this section of our NHS.

    I found this community whilst researching my own options for managing a diagnosis of ADHD. Whilst my medication choices may go against the grain with some here, I think that one positive by-product of the increase of adults like me choosing to enter the mental health service in mid-life is that, by the time we do enter it, many of us have been round the block a few times, we know what standards we should be able to expect from our public services and our healthcare providers, and we are in a relatively strong position to campaign to make things better.

    In this context, it is deeply unfortunate that our access to services sometimes seems to be limited by an apparent functional alliance between that sub-section of anti-psychiatry campaigners would rather challenge the legitimacy of our problems than develop therapeutic provision for us, and that sub-section of mainstream psychiatrists in the UK who would rather not acknowledge ADHD at all, possibly recognising the potential pitfalls of increasing the attention skills of a clinical population that often presents with a comorbid and highly treatment-resistant Bullshit Intolerance Syndrome.

    I am fully human and, because I am fully human, I am compelled to fight against a system that reduces anyone else to a sub-human status. The finest stimulants on the market don’t touch the sides when it comes to dampening down my concerns for equality and justice. I’m absolutely enraged about what is happening in my own community and I’m just not letting it go.

  • “Functioning for 26 years, mostly on building sites” is an awesome thing to request to be added to your mexical records!

    I once saw on my notes “mental health status seems normal but at times uses pressured, rapid speech”

    I pointed out to the doctor that he seemed to have gained his medical degree in the city where I was born, and I asked if he had noticed any other incidences of “pressured, rapid speech” from people in that area. He had the decency, at least, to apologise for pathologising, by implication, a whole densely populated area of England, based on dialect and speech patterns alone…

  • I find the concept of “forgiveness” more puzzling and less valid than most psychiatric diagnostic terms!

    As I understand it, “forgiveness” is commonly considered to be a two-part act which involves something like…. 1. Choosing to let go of resentment that we have the right to feel, but that may bring harm upon ourselves if we allow ill feelings to fester, and 2. Choosing to extend compassion and pardon to those that have wronged us.

    All of this sounds noble on the surface but is so often used to manipulate people into setting aside grievances, with the veiled threat that they will regret it later on, if they don’t let bygones be bygones.

    I simply don’t see that “forgiveness” is necessary or sufficient for emotional healing to take place. It is quite possible, in my experience, to reach a place of peace within one’s own heart and mind that a certain event from the past shall no longer preoccupy or harm us, without the neex to extend a pardon to the person that offended us. It’s obviously not healthy to ruminate ourselves into an early grave, but there’s nothing wrong or unhealthy in my mind about taking an emphatic decision that some behaviours are beyond the pale, and standing firm in a conviction that we simply will not pardon these behaviours. Just… no. And I feel happy and empowered to say this!

  • I’m so sorry and so shocked at what you’ve been through.

    You write so beautifully and you seem to have come through this nightmare so amazingly well. I’d buy your book without hesitation and sincerely hope you will write more so that we can learn from you.

  • I sympathise with your underlying concern for children’s health and well-being.

    How though do you propose to hold parents accountable for the perceived crime of accepting ADHD as a valid, treatable psychiatric diagnosis, when your main argument involves labeling the parents themselves with a different psychiatric diagnostic term, ie, Munchausen by Proxy?

    I agree that there is a need for accountability at all levels in this area, but I’m not sure that armchair diagnosis of parents is a helpful way forward.

  • Not in my experience. Moderate use of stimulants does enable me to better maintain focus where necessary, but also helps me to switch focus at will when the situation demands.

    I question the extent to which a child would be able to articulate either the benefits or negative impact of stimulant drugs, which is why I share your concerns about their prescription to children. But I think that the lived experience of articulate adult patients is valid and important to the credibility of the debate.

  • I totally agree that we need to abolish forced treatment. In the UK, a tradition of case law provides a potentially powerful vehicle by which to take this forward, and there is plenty of downright illegal behaviour documented and out in the public domain that is ripe for challenge.

    There are many courageous stories on this site, of service users willing to give their all to prevent the abuses they suffered being passed down the line to the people that come into the services after them.

    When it comes to it though, so many of us ultimately find ourselves crying out as lone voices in our own situations. Sometimes it seems that the so-called professional radicalism that permeates the Twittersphere, in practice often just gets thrown out of the asylum window by “critical psychiatry” practitioners themselves, in an apparent reluctance to take risks and expose themselves and their views to the scrutiny of their employers. And without concrete and unequivocal support, service-users are hard-pressed to make sucessful challenges against even the everyday injustices we face as voluntary patients. Inequality becomes further ingrained into the health care system with each voice that is silenced, and there seems little hope for the dear souls being held against their will.

    Many of the professionals who post here at MadInAmerica seem to be drawing salaries from institutions around the world that enforce the very barbaric treatments that they oppose. Have you thought seriously about collectively using some of your personal financial resources (your blood money! 😉 ) to help bring about test cases in the countries in which you live and work? Most of your most vulnerable service user groups lack the financial privilege to take action personally, but maybe you could club together to help out an incarcerated service user, in a practical way? GoFundMe anyone?

    Or, you know, just speak out every time that you see injustice occur – and I don’t mean by holding a group tutting session with your Tweeps…

    We, the service users, will carry on shouting out, with or without your overt support. But we could be stronger together if you would add your voices to ours, every time an injustice occurs, in your workplaces, at the time that it happens.

    When we come to it
    We, this people, on this wayward, floating body
    Created on this earth, of this earth
    Have the power to fashion for this earth
    A climate where every man and every woman
    Can live freely without sanctimonious piety
    Without crippling fear

    When we come to it
    We must confess that we are the possible
    We are the miraculous, the true wonder of this world
    That is when, and only when
    We come to it.

    By Dr Maya Angelou

  • “My inquiry began immediately, as I imagined parents saying…”

    “Let’s ask ourselves why loving parents are choosing…”

    A clarification question first: so what form did the “inquiry” actually take? Did it involve any inquiring questions being put to real-live parents who have made actual choices about stimulant medication for their offspring? Or was this narrative constructed entirely in your own mind….?

    This is a really interesting topic to me, especially when read from a UK perspective, but the lack of methodological rigour (just to mildly understate the problem) is a little disconcerting…

    As background, I am an adult who sought assessment for ADHD in mid-life, and I use dexamphetamine in what I think is a very moderate way, alongside exercise, diet, meditation and other lifestyle changes. No-one ever tried to push upon me a disease-centred model of mental illness and I’ve never thought the DSM-5 to be anything other than a descriptive, categorical attempt to make some meaning of a very inexact science. I view my decision to take meds as an open-ended one, made only after a great deal of research and, so far I am happy with my choice.

    Regardless of this, I do have huge concerns about the increasing use of stimulant medication in children, as I think many people in the UK probably do. If I could go back to the beginning and start again, I would not wish to have been prescribed meds at a young age, in order to improve my “performance” or to make my behaviour more acceptable to others. That’s not why I use meds now, and I am at a time in life where I am able to be assertive about my right to make informed choices. I never fail to be horrified by the rubbish that is served up for children’s consumption, whether by McDonalds, or Disney, or SmithKlineGlaxo et al.

    Looking back, I just feel a little sad for the missed opportunities to learn to understand and accept myself as I was back then, and to build strategies and habits that might have better helped me to manage some very difficult and enduring problems, back when my brain was probably better equipped to take on the challenge. As someone with an interest in education and child development, this is obviously something I will be continuing to think about as time goes on.

    I don’t have kids of my own and am not entirely sure at what age I think it is appropriate to discuss medication-as-a-last-resort with kids that want to try it, but I don’t think I would personally consider a child mature enough to engage in a decision-making process about psychoactive medication much before the age I would give them free-reign over their own Facebook account. The bottom line though is that it is easy to make judgements like this in a situation that is not actually impacting on my own life. The older I get, the more I realize how little I actually “know” about anything, and so I would hesitate ever to weigh in with opinions on another parent’s choices unless I knew their situation really really well, and they have explicitly asked for advice.

    The UK perspective on ADHD is a little different to your own, as you will be aware, and so some of our differences of opinion may be down to that.

    We don’t really have the problem of the advertising of stimulant drugs in the UK, unless people go looking for adverts on overseas websites. I didn’t actually know that drug advertising was a “thing”, until after my own diagnosis, when a UK psychologist published her dissertation about the association she perceived to exist between YouTube adverts and a rise in the phenomenon of the ADHD woman! You can possibly imagine the surprise that caused to many of us from the generation that mostly use YouTube to look up old episodes of Victoria Wood sketch shows from the 90s …. 😉

    Most GPs here will still tend to be conservative in their approach to ADHD, despite the fact that there has been a clear overall rise in prescriptions of stimulants to children. In my part of the UK, it has become normal practice for all parents to be made aware of local parenting support groups right from the start of their ante-natal care in pregnancy, in an attempt to normalise the stresses of parenting, and to build a bridge from which parents of children with additional needs can feel more confident about asking for help in managing more challenging family situations.

    (We also have a national campaign going on at the moment called #PowerToTheBump which is aimed at making expectant mums and dads aware of their rights to take paid employment leave to attend ante-natal appointments – and if we want to make a difference in children’s lives, I think initiatives like this are one excellent way of engaging parents in thinking about, and taking ownership of, their child’s health right from the outset.)

    In education, we have a strong emphasis on providing individual learning plans to children with additional needs and, while there will always be rogue individuals in the profession that give duff advice to parents, generally there is a blanket refusal in schools to even discuss diagnostic labels unless they have already been made in advance by a medic, given that educational professionals have no expertise or power to make such claims about the causes of any given behaviour or difficulty.

    So loving parents in the UK probably aren’t influenced very much by these factors when they turn up at their GP surgery asking if their child had ADHD.

    I deal with enquiries from parents worried about their children reasonably often, as a member of a couple of online communities for adults with ADHD. Honestly, overall I think many parents here seek medications for their younger children simply because they are struggling and don’t know what else to do for the best, and they have learned about the phenomenon of ADHD in children mainly as it has spread from you guys over the pond, on both sides of the debate. 😉

    Personally, I have no problem accepting the construct of ADHD as having reasonable face-validity for those of us who are struggling with the sharp and pointy end of attention and concentration problems. To that extent, I don’t object in principle to parents seeking help, or to doctors making diagnoses of ADHD in children. My diagnosis doesn’t make me feel “broken” and it doesn’t define me. Rather it has served as one of the stepping stones towards a place where I have a better understanding of myself, and a more compassionate plan for the next part of my life journey. I just generally don’t think medication should be considered as the first or best answer to most things in life, either physical, emotional or behavioural.

    Whether ADHD symptoms are a product of nature, nurture, or the society we live in, the reality, as I perceive it, is that parents presenting at GP surgeries with questions about ADHD are simply doing their best, in a situation where they themselves are likely to have spent a good proportion of their lives sat on the naughty step for impulsive or distracted behaviour. Childhood is a brief window of opportunity for growth and development and most parents want their own children to do better than they did, and be happier than they were. From the real-life stories I have heard, from worried parents that are confiding in us, struggles with attention and concentration do seem to be handed down through the generations in one way or another, and that makes for some fraught and distressed home situations in which parents barely have the time to read the instructions on a cereal packet, let alone trawl the internet for adverts about cotton-candy chemical cures…

    I don’t know the answers to all the questions, but I do think that one good way forward would be for clinicians, teachers and community workers to speak less and listen more to parents’ and families’ own individual accounts of their problems, rather than generating your own narratives which seem to be drawn more from your imagination rather than your knowledge of the lived-experiences of others. Simplistic and thinly-veiled “Big Bad Pharma” narratives like this one just seem to me to serve the purpose of taking shame away with one hand (“you’re such loving parents…”) before handing it back with the other (“you poor deluded fools”).

    When young parents visit the internet support forums that I frequent, they usually arrive wanting to know our top tips to get their child assessed and medicated. Most of what we do involves listening and supporting them in thinking about how to make things better. Hopefully they go away feeling a bit more empowered and knowledgeable about the best ways to seek support from local parenting groups, to ask for individual assessment and planning for their child’s needs to be met in school, and to hold their heads high and stick to positive interventions when their kids cause mayhem at the local park or museum -because public spaces belong to all of us, and no child should be shamed for their enthusiasm in exploring the world around them. They don’t get advice about how best to procure Ritalin for 3 year olds, but they do get buckets of empathy and support because that is what know and do best.

  • I take dexamphetamine for ADHD.

    I would never in a million years have predicted that I might make this choice as I did, in my 40s. I didn’t really know ADHD was a “thing” here in the UK before I was already in my 40s. I was all over psychology like a rash, for the first 4 decades of my life and, if I had known Critical Psychiatry was a “thing”, I’m sure I would have been entirely opposed to the idea of stimulant meds like most people here. (I have co-morbid blatant hypocrisy disorder and am utterly shameless into the bargain. 😉 ) Honestly, I still do a double-take sometimes. I don’t see myself as “sick” though, and my relationship with Big Pharma’s Little Brother (a relatively cheap supplier of niche generics to the UK NHS) is what I would call “open-ended”, so there’s that too.

    “But a person “with” ADHD can, with proper training, learn to behave in a more attentive and less impulsive manner.”

    I can only speak for my own experience here but, fwiw, what you describe above, Phillip, just doesn’t entirely resonate with my own experience over at least two decades as a very motivated, psychologically-minded adult. There are certainly ways I have learned to compensate for and/or hide my inattention, and my difficulty with redirecting my focus at will. I’m naturally quite risk-averse, I don’t enjoy driving at speed, and I have no interest in fast cars, so I don’t have a hugely shameful traffic offence record, anyway. My driving is not the primary reason I take dex. And “speed” is not an outcome I have encountered at a low dose of dex. My goodness though, the things I noticed for the first time, once I started using dex, was alarming! The police cars parked in lay-bys for a start… I never used to see them until the lights were already flashing and the indicator was signalling me to pull over….

    I started wearing reading glasses (though not for driving) the same year I started dex, and my experience of taking dex has felt rather analogous to putting a pair of glasses on for the first time and “seeing” everything more clearly. And I had the pleasure of taking my driving test three times, over three years, so it wasn’t a lack of training and instruction there!

    I don’t pretend to understand the underlying mechanisms of either the origins of my condition, or the drug action, even though I could give Joanna Moncrieff a good run for her money any day on the questions I asked before I started taking the meds. I’m just making an informed-as-possible choices given the current state of an imperfect science in an imperfect world. It’s as weird as all heck to me after considerable study but, on balance, this a choice that does me more good than harm right now, and so I’ll keep it on annual review.

    I’m not a member of Barkley’s fan club and I don’t think anyone should be required or pressed to take any kind of psychotropic meds they don’t want. Bottom line, the law gets to decide whether I keep my driving licence and what penalties I have to pay if I fail to notice the speed limit change as auickly as everyone else on the road.

    In terms of the difference between “doesn’t” and “can’t” as you put it above, I experience the inattention and focus issues as being similar in nature to the problems I have always had with telling my left hand from my right hand. Certainly there are strategies I can learn to mitigate the impairment, but I don’t seem to have been able to train away the core difficulties yet.

    I have suffered with what DSM-V calls depression in the past, and my experience of that was very different. I can totally see low mood as being “treatable” by understanding the underlying factors, changing my behaviour, experiencing the healing compassion of others, etc. The inattention stuff is simply a very different kind of experience for me.

    I was a very intellectually bright child, so no-one either trained or disciplined me to pay attention at school, I just blundered my way through by the skin of my teeth, and I will never know now if early learning and teaching methods could have helped me. I’m still very motivated to review and adapt my own behaviour though, which is partly why I describe my relationship with BPLB to be open-ended. I am far from disempowered. If anything, the dex effect just has me wildly curious about what might be possible in terms of developing new ways of learning and coping for the future. I didn’t know what I was missing before. Now I have a perspective that I would still be thankful for, even if my dex was taken away permanently tomorrow.

    As far as the medication of children goes, I really scratch my head at the inference that adults who identify as having ADHD are going to join Big Pharma in chasing innocent children around the playground with a sedative cosh. In the online communities where I talk with other adults with ADHD, the conversation about kids tends to centre around attachment parenting, non-violent communication, and the best public spaces to run little legs around until bedtime. And how much we hate the Mickey Mouse Clubhouse theme tune. The usual parenting stuff, really.

    As someone with a strong interest in education, I have zero interest in disciplining the bejezus out of kids with attention or hyperactivity difficulties. No more than I would tie anyone’s left arms behind their back to make then write in the “right” way. I don’t think educators have any business recommending or getting involved in medicinal treatments either. My own journey of discovery over the last few years has been very humbling and I don’t feel in a place to judge with any certainty what might lie beneath another person’s difficulties.

    In schools we seem to have increasing numbers of kids falling by the wayside under the pressures of 21st century life for a range of possible reasons, and I think difficulties around distraction and inattention need to be reviewed in the broader context of the way we design and deliver curriculum, the way we build playgrounds and classrooms, and in the ways we help children to develop self-awareness and self-discipline. No cosh of any description needed.

  • “For example, it would be especially politically powerful if Resistance women reminded other women how First-Order Psychiatry oppressively pathologized them, especially assertive and anti-authoritarian women.”

    Firstly, I do love it when a man gives me permission to be assertive, so thanks for that, Bruce! 😉

    “Also, politically-thinking Resistance activists must be careful not to discourage anyone who is also thinking politically, even if another’s tactics appear ineffective to them. History teaches humility here. The reality is that nobody knows for sure what works or how it will work. ”

    Let’s talk about humility then.

    I am an educated, anti-authoritarian woman in my 40s. I have a critical approach to psychiatry in general, and a particular revulsion towards coercive and enforced treatments of vulnerable and distressed human beings. I also identify as meeting the DSM-V criteria for ADHD (in terms of its face-validity for my own perception of my own lived experience), and I choose to take stimulant medication that I think does me far more good than harm, as of now.

    It can feel tough around here, for people like me. And yet, I think our commonalities in thinking are so much more important than our differences when it comes to the important issues about freedom and humanity.

    What do you think? Is there scope within your humble strategy for a strategic alliance with those of us who make choices to ingest certain psychoactive substances into our bodies, or do you view us as being Of The Enemy, or simply deluded, or what?

  • I don’t meet the criteria for the study but I look forward to seeing the outcome. 🙂

    I am in the UK and withdrew relatively easily from venlafaxine, after 18 months of use. I had a good GP and made an informed-as-possible choice before ever starting the medication, and I think that having done some research before I started taking the meds in the first place helped me to feel more settled and in control of the discontinuation process.

    I think I took advice from one of Joanna Moncrieff’s blogs about crowd-sourcing information about what to expect when discontinuing any given drug. Reading about others’ experience was a mixed blessing. In the event, my own discontinuation experience was nowhere near as difficult as many of the horror stories I had read, and I think it might have been even easier without the anxious expectation that Something Really Bad was about to happen to me, in the way others had described. On the other hand, I really did benefit from the experience of others when it came to deciding on the method of discontinuation. Standard medical advice seems to be written by people who know not their half-life from their elbow! Taking it very slowly, and splitting low dose pills as far as possible worked best for me, and I learned how to do this from following the stories of other patients who had gone before me.

  • “Tell me what the difference is between the right of a patient to refuse treatment from the right of a patient to choose treatments ?”

    This, exactly!

    I also think that those of us who are demonstrating critical thinking skills and making assertive, educated choices about the substances we ingest into our own bodies have a valuable role to play in raising expectations and standards of care within the current system.

    We need to hold our heads high and refuse to be shamed and silenced by anyone, for any reason, on this one.

  • I’m a member who chooses to take one psychoactive drug, and has withdrawn from others. I don’t use pain meds but I sympathise with the OP’s overall message.

    I’ve just about reached the “You’re dead to me” stage of grieving for that subsection of Online Mental Health Helpers that somehow feel entitled to comment on the substances that I ingest into my own body. I only give my doctor permission to make an arms-length contribution to my final decision, so I’m not about to hand over control to a bunch of internet strangers just yet! 😉

    I do wonder why there is any need to engage in war with patients/service users at all, for any reason? What purpose does that serve, except to alienate potential allies?

  • “Though to accomplish this, obviously, ongoing work reaching out and co-visioning would be critical.”

    I think the ” co-visioning” aspect is key. And in order to do that you need a great deal of communication with your potential allies.

    I am an adult, using medication for Adhd by choice. I share many of your critical views on psychiatry and enjoy reading here, as part of my continuing consideration of my own concerns.

    Sometimes, though, I feel as though I am observing an academic pissing contest, with each side plotting to co-opt for their cause the patients/clients/service users/survivors or whatever we are being called this week.

    Communication and listening and respect will be key, I think, if you want to avoid alienating the people you are trying to support. Traditional psychiatry has been “done” to us for generations. The thought of a new movement “doing antipsychiatry” to us, doesn’t sound all that appealing.

  • “Children have no such choice, and often, when parents are not so in love with the idea of their children taking drugs, they are threatened by child services etc. that they just might have their children taken away from them and placed in foster care if they don’t go along with the drugging. Children in foster care are drugged to the gills and made into absolute zombies, all through no choice of their own. ”

    I think we must come from very different cultures. My impression is that requests for add assessments of pre-schoolers is very much parent-driven, and considered unusual in the UK. Child protective services are generally overwhelmed with complex cases and I have never heard of adherence to adhd meds being used as a threat in custody hearings.

    Generally, I think adhd is still quite stigmatized here and the major danger I see is that parents may sometimes chase a diagnosis by way of validating their own parenting, and locating the problems inside the child, before trying different non-medical approaches first, or at least, alongside the meds.

  • One thing I think is important to say is that I think psychological assumptions can also be harmful if they are overused. For so long, my procrastination behaviours were identified by others as being related to “perfectionism” and I was encouraged to explore where in my past, my ideas of perfectionism came from.

    That never resonated with me, although I bought ALL the self-help books that the pop psychology industry could throw at me, at great cost.

    And then one day, within around 40 minutes of taking a methylphenidate pill my “perfectionism” disappeared (for 4 hours). The cure for my psychological condition was cured by the ability to focus long enough to finish what I needed to finish, wanted to finish, and had been happy all along to finish imperfectly if necessary…. Who knew?

  • Thanks for that link. He looks interesting. 🙂

    I’m absolutely OK with the ADHD diagnosis though. Yep, it’s a daft name for a condition where I don’t have any hyperactivity symptoms, and yep, the diagnosis fuels a massive pharmaceutical industry, esp in the USA. But we live in an imperfect world and accepting a label in order to obtain a prescription for a necessarily controlled substance is fine by me. I think the diagnosis will continue to evolve as the condition is better understood and I reserve the right to change my mind and withdraw from treatment at any point. I’m just OK with making the most informed decision I can right now, and playing the future by ear. And, to look on the bright side, I doubt anyone locally would mind if I chose to throw away my ADHD diagnosis any time soon – it is the “paranoid personality disorder” label that they need me to wear, in order to cast a shadow of doubt over the validity of my complaint about the psychiatry service! 😉

    TBH, I didn’t know that adult ADHD was a thing, until about 18 months ago, and I am 43 years old. No-one “sold” it to me in the way it seems to be marketed in the States. I came to the realisation of the symptoms on a meditation mat in a Mindfulness class run in my local Buddhist Centre. (My Buddhist friends cringe when I say that, as they are generally super cautious about psychiatric labels and treatments!) But, yeah, it was through a mediatation class that I came to reflect on issues that I had discussed with my GP over previous months, and to notice that there were quantitative and qualitative differences between my experiences and those of many others in the group. I did a little googling, tentatively approached my GP, and then started looking at a whole lot of non-medical approaches to managing the unwanted symptoms before I became ready to give medication a go. And medication is still only an adjunct to the non-chemical approaches I take to managing the unwanted symptoms.

    In the UK, the specialist adult ADHD clinics/professionals are quite well engaged with patient groups and the research literature is quite easily accessible and digestible so I felt as informed as I could be before beginning treatment. I don’t feel safe with my current psychiatrist and I am determined to get to a specialist one way or another because I’d like to try different medication that might suit me better in terms of some of the unwanted effects, but I am happy with the therapeutic effects of the meds. I am someone who would normally be reserved about even taking paracetamol (tylenol?) for a headache, so I have surprised myself (in a good way) by trying these.

  • In the interests of refusing to bear shame, I will say here that my “wanted diagnosis” is of ADHD-Inattentive. I know that that diagnosis is controversial, but it fits me like a glove and gives me access to controlled drugs that are a benefit to me.

    I am seeking a referral to a specialist ADHD clinic but have been denied my request on the grounds of…. no reasonable grounds. In lieu of my right to proper treatment, I am seeing someone with a “special interest” in the condition, but without much knowledge of the latest clinical and research outcomes. (Under the heading “self-referential behaviour”, he wrote with no apparent sense of irony, “she has read more papers than me”. Ummmmm….. what can one say to that?! I actually want to reclaim that part of the diagnosis and wear t on a t-shirt.

    (Maybe I should get quotes from my case notes printed on t-shirts to wear to future reviews: “Have read more papers than you”, “feeling angry and litigious today”, “distrustful (cf: long complaint letter)”).

    I do blog, but it’s private for now, and is a means of thinking things through in a more balanced way.

  • Thanks, Isis. I don’t feel ashamed any more.

    One enormous way in which I feel privileged is that I have had consistent and fantastic support from my GP surgery. When I first sought help a couple of years ago, my lovely GP was generous with his time and unconditional support. When I admitted to feeling disgusted and ashamed of my depression, he repeatedly told me that my feelings were not “me”, that I was not disgusting, that I could and would recover. Each week he encouraged me to “Keep Going”.

    I started to feel shame again when I first came in contact with the mental health team, but that turned into anger (and hilarity at times) when I realised that the dysfunction was not all mine.

    I’m fucking angry (are we allowed to swear here?) about the way I am being treated but I am entirely unapologetic for that, and I am chanelling my anger into trying to make services better for others who come after me.

    As Lucy will know, our Health Board area covers some of the most economically deprived areas in the country. Many mental health patients will not have had the educational privilege that I have had, and I realise that I am unusual in my capacity to be outspoken in this particular Health Board, but I feel it is important for those of us who can speak out to do so, for the greater good.

    Aneurin Bevan came from a Welsh valley close to ours. He was a passionate and unashamedly angry campaigner for social justice and he drove forward the creation of our National Health Service with a relentless drive to challenge social and health inequalities. I asked my psychiatrist to consider whether there would even be a national health service in which he is privileged to work, if Nye Bevan had been discovered by his local psychiatry team before he was discovered by the Labour Party. The psychiatrist looked perplexed and then admitted that he wasn’t quite sure who Aneurin Bevan was….

  • As an adult, diagnosed recently with ADHD – Inattentive, I have very mixed feelings about the polarised views that are expressed so loudly by professionals on either side of this debate.

    My instant reaction is to want to respond with unkind words and to make unpleasant suggestions about which orifice I’d like the author to shove his mythical doodoo arguments, but I’ve recently taken my methylphenidate so I’m able to resist temptation right now…. 😉

    What I would say is that I am glad of the recent changes to DSM-V which allow for diagnosis to be made for symptoms dating back to before age 12, instead of the previous requirement at age 7. I had a delicious childhood, spent climbing trees, racing round on rollerskates, and learning in a progressive school environment where there were very few circumstances in which it would have been possible to recognise inattention in any child, due to the buzz of activity all day long. I would love every child to have elements of my own childhood experience. to enable them to develop without recourse to medication as far as possible.

    Beyond the age of 12 though, I remember a slow creep towards a life of struggle, that I now recognise as being largely related to ADHD symptoms. Whilst I don’t consider medication to be the whole or even the major part of my own treatment, I would not want to spray excrement over any sensible assessment of a young person’s struggle with ADHD symptoms.

    As an adult, I view my medication as being a source of relief and help that is enabling me to engage happily with activities that are meaningful to me. My medication use is all about me and my decision to take the medication is mine alone to make. My concern around prescribing medication to children is that it is more difficult to judge whether the medication is always of benefit to the child, or whether it is being used (and possibly mis-used) to bring benefit to the adults struggling to manage the child’s behaviour alongside the usual stresses of life.

    I am hoping that, as time goes on, those of us who identify with an ADHD diagnosis will begin to speak out more loudly about our personal experiences so that we make ourselves heard over the rhetoric being blared from loudspeakers by professionals who themselves have little experience of living with ADHD symptoms. And then, I hope that we adults will all learn to find ways to put a sock in our own mouths while we listen carefully to what children and young people with ADHD diagnoses have to say as they make their way through child services and into adulthood.

    For the record, I was very anti-psychiatry and very much opposed to taking drugs of any kind before I began to explore my own ADHD hypothesis. I was terrified of losing my sense of self and becoming someone I didn’t recognise, if I started the medication. Bless me, I severely over-estimated how these things work! I don’t feel any different at all after taking them and (sadly) they don’t massively change my experience of my symptoms. I still experience the full range of creative and emotional expression that I had before I commenced medication. I am still absolutely and recognisably me. I just have my shit together a little bit better than before and I get more enjoyment out of life now that I am more able to focus better on activities that are important to me.

    I know that not everyone has the same experience of taking medication, but I believe that mine is valid. I am more than a number, and I am more than a product of mythic and doodoo.

  • I never has a psychiatric diagnosis before I came to the attention of the psychiatry services in your local health board area, this last year, Lucy. Now I have some spare ones that I am willing to donate as an Easter Giveaway treat to anyone who wants to share the experience!

    Most notably, I have alleged autistic spectrum traits relating to my “rigid thinking” around NICE Clinical Guidelines, and paranoid personality disorder symptoms relating to my “distrustful, combative” questioning of the psychiatrist’s (lack of) expertise, a tenacious sense of personal rights (to be treated in accordance with aforementioned NICE Guidelines….), a litigious nature (demonstrated by a formal complaint about the loss of massive amounts of my personal data) and excessive self-referential behaviour, as evidenced by the audacious way in which I talked about me and my own lived experience during an assessment of….. well, that would be me, I think. Or was it supposed to be all about him, and I missed the memo about that?

    One of the most difficult barriers for me of rejecting my unwanted diagnoses (one of the diagnoses was wanted and is helpful for treatment purposes) was the initial sense of intense shame I felt, to be in the position of needing to see a psychiatrist in the first place. Another was (and is) the fear that if I reject the unwanted labels, then I may be denied continuing access to the treatment that I do feel I need.

    Advocacy support has been massively helpful to me in helping me to throw off the straitjacket of my psychiatrist’s inexpert opinion. Mindfulness practice helps me to stay with the uncomfortable sensation of sitting under the gaze of the creepy psychiatrist, whilst retaining a sense of myself as being more than the sum total of his frantic scribblings. Access to my clinical case notes was a significant factor too! The Paranoid Personality Disorder diagnosis was not disclosed to me because the psychiatrist in question feels uncomfortable sharing his thoughts with patients, apparently. Bless him, poor love.

    Any chance of matching my Great Easter Diagnosis Giveaway by offering a couple of free copies of your book to the local psychiatry team?!