This is such a brilliant description and understanding of what happens when you recieve a diagnosis and then accept medication.
It also highlights that the prescribing staff have no understanding at all what it actually feels like to take the medication.
Now 6 years off meds after 40 years and 5 years of withdrawal, its only now that I can fully appreciate how awful the meds left me feeling for so much ofthe time, and yes, the colours are dull, experiences, joy, sadness, anger, pleasure, all dulled down, with that very apt description of the floor being raised and the ceiling lowered.
The hardest thing for me has been getting used to the flooding back of emotions and experiencing life’s riches once again. Removing those in such a brutal way, even though perhaps at times I needed it, seems cruel to allow it to continue for so long without addressing the issues that had led me to being unwell in the first place.
Thank you Alex for this.
Thank you so much for your lovely comment. It means so much. Unfortunately due to the huge emotional storm I was going through i got kicked out of a significant online withdrawal group as well. In some ways that became a relief as I simply experienced so much negativity and stuff in those groups it was actually scaring me and making me far worse. It’s been somehow that huge understanding of what was happening to me, having 2 Psychologists who so believed that I could do this plus tapping into and finding things I enjoy like working with my hands in the countryside (in all weathers I might add) as well as returning to archaeology. Recently I have begun to explain a little to some of those people in those groups who although allowed me in, struggled to understand. Now they do begin to get it more, I am being accepted and valued now. I have filtered out those who didnt and wouldn’t try to understand so I have better quality time.
It’s been very long and hard but one of the keys has been learning about myself, who am I? What makes me tick, how do I manage days when I just cant cope. One of the most crucial things has not been deciding on doing much until the actual morning but keeping people up to speed and explaining that has changed the dynamics and made it easier. In fact last week when I left the countryside project early, the volunteer manager said, I cannot imagine quite how hard this has been for you and you are doing so well, we can all see your progress now…….Bingo!!!
I think the saddest thing for me is that after geing involved with psychiatry for over 40 years, coming off meds myself after all that time, now off 5 and a half years and through withdrawal lasting about 5 years, I don’t know of a single service user in my area who would ever come off meds as they have been so conditioned to understand they need them for life and if they reduce and become unwell it’s only ever seen as relapse. No one even suggests it might be withdrawal.
I’ve managed it because I had support of a psychotherapist who was open dialogue trained as I am and his referral to another psychotherapist who supported me for almost 6 years to get me through. They could both see that I had no sign of a “mental illness” but was dealing with trauma from my parents divorce from 50 years ago and awful family dynamics since. Once I was off it became clear that an awful lot of the problems I had were actually most likely caused by the meds themselves. Now my moods have settled right down, my anxiety so bad after coming off is settling and im beginning to see a light at the end of the tunnel.
It saddens me greatly that for the vast majority certainly in my local secondary mental health care area other services users, Dr’s, professional staff in the NHS just don’t ever consider wanting to come off. Plus unfortunately high profile cases in the media who have committed crimes after not taking meds leaves staff very risk averse in working with folk who might want to come off meds.
It’s only been my own research, understanding what’s happened with me and the sheer guts to keep going in spite of feeling awful so much of the time. I’ve also had to leave my job as I couldn’t cope, plus many friends and family who simply couldn’t cope with my emotional storm and fall out and simply couldn’t deal with the length of time it was taking so it was easier for them walking away. Sadly they gave no consideration or understanding at all to the fact that I might be finding it hard and very bewildered and frightened over what was happening to me. It’s taken a lot of reassurance from the Psychologists saying they weren’t seeing any MI but only a normal, natural reaction and response to the damage that’s been done to me by others.
Sadly I now see the whole concept of the recovery model sitting firmly with the medical model paradigm. It seems to only see ones life challenges as symptoms of illness rather than exactly what they are, simply someone responding to the c**p that life throws at them in a way that maybe others see as “abnormal” and therefore a sign of an illness within them requiring treatment.
The recovery model sits within this as well, the quotes and understanding i read about simply state that recovery means living your best life within the limitations or maybe parameters of the illness. And it’s that last bit, only seeing ones different emotional response to the life they are experiencing as an illness that they need help to live the best they can in spite of it.
Well maybe we need to actually help and address people to work through their difficulties and empower them to forge ahead rather than tell them they are dysfunctional, need help, disable them, tell them the way they are is not normal. Who is to say what normal is anyway.? Similarly with anyone who declares they are atypical, well who decides what typical is and anyway I’m not sure, I, for one would want to be ever considered the same as anyone else, I don’t want to be “typical” to whom exactly?? Neoodivergent? Isn’t everyone on the f××××ing planet neurodivergent in the sense that every single one of us is completely different. It’s what makes humans the rich and wonderous beings that we are.
Stop boxing us up, labelling us and telling us because you don’t see us responding in what you consider a “normal” way there is something that requires recovery from, or to live in recovery from the box you have deposited us in and thrown away after being regarded as different from the norms you suggest are correct.
Thank you so much Freya for your reply. One of the most problematic things about all of this is that by being “diagnosed” and labelled you are then seen as the problem. As most if society buys into the medical model paradigm, only seeing ones emotional responses to the stuff you are trying to deal with, means that others are absolved from any responsibility from anything they might have done and/or continue to do as they can always say ” what? Not me, they’re the one who is ill again.”
Now that I am off the meds and the longer I get away from being on them, I can see that an awful lot of the issues I had and that were making me ill again and again was in fact due to the meds themselves. Sadly though the medics only saw some of the issues as illness not due to the meds.
Loss is hard as well coming off meds. My family only bought into the medical model and the veiw was that I needed to take meds for life and would never believe that the withdrawal was real and instead only saw that i was ill because I stopped taking them. In so many ways for them to ever understand that it was issues from my parents divorce 50 years ago that was never dealt with is perhaps a step to far, it’s simply easier to blame me than to admit they handled things badly.
Across society now people are seemingly unable to admit when they get things wrong. For me sometimes if people can just hold their hands up and say im sorry I got it wrong and I appreciate the damage it’s done to you, perhaps, for me at least, repairs more than hours unpacking things in therapy.
So through this, even though family know I’ve fought through and remain of meds with even the Psychologists saying they don’t see any signs of the supposed mental illness but they do see me emotionally responding and reacting to what’s happened and that is completely normal and if they hadn’t seen any reaction they would have been more worried. My sister, the only one left, has walked away as she can’t deal with the fact and have to accept they got it all wrong.
I think Sami is brilliant, particularly over the problematic rise of autistic spectrum and adhd stuff as well as Anders Sorenson and his work on living life after meds.
In so many ways it’s been the emotional side of coming off meds, flooding back of emotions, my feelings of diagnosis and the stigma and damage that does etc.
I completely despair at a world that seems to only see everything in terms of wanting a medical diagnosis to explain the difficulties and challenges they face in life rather than seeing we are all different and respond to everything completely differently in our own individual and unique way.
What feels so wrong is that by medicating people so much that you crush emotions completely, that emotional bluntness that seems one of the goals supposedly relieving ones emotional distress and response to life’s challenges, you take away the richness of life in terms of how each of us interpret and experience what life throws at us beit good or bad/difficult.
Whether this is being done in terms of “being kind” so relieving someones emotions, particularly if they are deemed more extreme perhaps, or maybe the clinicians themselves find it too distressing to sit with/be with someone going through tough stuff so easier to shut it down with meds im not sure.
But whatever, shutting down ones emotional responses to life artificially, seems to me immensely cruel and takes away life’s rich tapestry of feelings that we humans can experience.
Plus when you come off meds after so long, as I have, coming off everything after 40 years, that flooding back of feeling has been so hard to deal, with and I feel real anger at not having learnt the skills along the way to manage emotions, plus now dealing with things that were closed off 40 years ago is indescribable cruel in so many ways for clinicians to have allowed that to happen.
One should get the help to process stuff, not shut it off.
I agree with that as unfortunately under the medical model a peer worker won’t necessarily have any “formal” clinical training and so they will never progress fully within a clinical setting. However I do feel they could progress within non clinical settings, training, service development etc where they can bring their own experiences of having used the systems to help and hopefully influence future design and delivery of services. That very much though depends on the perceived value of the experiences they bring, to the clinical staff and “professionals” they are working with.
The medical model im afraid is still so all encompassing within the whole system that i believe the “recovery model” itself firmly sits within this paradigm. The famous Anthony quote which states that recovery is …….. (part of quote!) It is a way of living a satisfying, hopeful and contributing life, even with the limitations caused by illness.
And the south London and maudsley nhs trust states …….Recovery involves living as well as possible.
Both these quotes in my view fit the medical model as they seem to be saying you have an illness within you that you will never fully get over but you can be helped to manage a life as good as possible.
Er hem…….not withstanding the fact that so often the meds themselves seem to hold you trapped within a kind of no man’s land suppressing emotions no you don’t react and cause any issues to those around you.
BUT maybe, just maybe if people were given targetted needs led support rather than diagnosis and a medical solution, so recieved some kind if counselling if needed, but maybe financial, housing, relationship help etc maybe delivered through the open dialogue model, then maybe we will get somewhere rather than only veiwing MH through the medicalising emotional responses to life events however different or “extreme” they may seem to others particularly those who sit in judgement in the Dr’s office deciding on whether what they are seeing is a normal response or not.
Capacity assessment is always decision specific even if you have detention or any other neurological capacity limiting illness. Having taught on training for staff who are approved MH practitioners and Dr’s on the interface between the Mental Health Act and the Mental Capacity Act looking at which one is the appropriate act to use when considering depriving someone of their liberty, a robust understanding of the assessment of Capacity is essential in getting the call right. With the MCA one might need to consider time of day due to effects of sedative meds etc. The decision that would be asked for the MCA is can the person agree to being admitted to hospital or somewhere. Depending on the response one would then have to decide whether they have the capacity to make that decision under the MCA or is it their actual psychological state that’s leading to the answer and that then encompasses all the stuff about risk, professionals perceptions of MH, power imbalances etc.
Is an MCA assessment likely to be done covertly? Not sure as its decision specific so if you were after them making a decision about something is it likely that decision wouldn’t be disclosed to the person and for what purpose? More likely ditch the MCA and detain under MHA. Law easier for them to manage in a way!
I do think one could place uk firmly in this box as well. Working as a LXE advisor in a large uk mh trust having been bullied out of the Peer Lead role and then effectively pushed out of the LXE role in favour of volunteer lxe, the power imbalance is so huge that effectively the only thing anyone trying to work in the system can do us tweak stuff rather than effect actual change.
I think as well I found arguments within the actual lxe community about leadership as many don’t accept that leadership roles have any place within this work and yet we all build experience over time and part of that recognises that sometimes you leave some things behind as you no longer have direct experience in sone areas but develop different skills to engage, learn and work at different areas in the system. Surely everyone has a place to input in the system, each person has valuable input wherever they happen to be. It’s when you hit the clinical stuff that the arguments against the value of LXE work begin
Part of me feels that one of the most basic things is that clinically trained staff simply don’t value the understanding that comes from living with some form of mental distress or from experiencing the things that we are expected to go through when subjected to the various policies, practices, procedures and laws that unpin mental health systems in the west
My own journey of coming off all meds after 40 years almost 5 years of withdrawal, wiping out my diagnosis given 40 years ago and with a previous medical background I am still seen as someone who has little value when it comes to trying to improve services.
Generally if you tell your story and try to do your best, you get a pat on the head ist it sweet she’s trying hard!
I did read sometime ago that the pandemic had set LXE work back 10 years. I do agree with that as services just had the attitude we know best as go how to manage this even though they were still doing things that affected service users lives and simply refused to allow any input at that time in any decisions that were being made. It was almost as if we were stupid and wouldn’t be able to grasp any of the problems as we had no clinical understanding. Frankly I believe that time destroyed much off the progress that had been made over many years
Great article and I like the suggestions of alternative questions that might be preferable. On my inpatient journey the word ‘ fine’ was loaded ……. “Yes I’m fine, ‘f***ed up, insecure, neurotic AND emotional’ all said with deep meaning
This is such a brilliant description and understanding of what happens when you recieve a diagnosis and then accept medication.
It also highlights that the prescribing staff have no understanding at all what it actually feels like to take the medication.
Now 6 years off meds after 40 years and 5 years of withdrawal, its only now that I can fully appreciate how awful the meds left me feeling for so much ofthe time, and yes, the colours are dull, experiences, joy, sadness, anger, pleasure, all dulled down, with that very apt description of the floor being raised and the ceiling lowered.
The hardest thing for me has been getting used to the flooding back of emotions and experiencing life’s riches once again. Removing those in such a brutal way, even though perhaps at times I needed it, seems cruel to allow it to continue for so long without addressing the issues that had led me to being unwell in the first place.
Thank you Alex for this.
Report comment
Thank you so much for your lovely comment. It means so much. Unfortunately due to the huge emotional storm I was going through i got kicked out of a significant online withdrawal group as well. In some ways that became a relief as I simply experienced so much negativity and stuff in those groups it was actually scaring me and making me far worse. It’s been somehow that huge understanding of what was happening to me, having 2 Psychologists who so believed that I could do this plus tapping into and finding things I enjoy like working with my hands in the countryside (in all weathers I might add) as well as returning to archaeology. Recently I have begun to explain a little to some of those people in those groups who although allowed me in, struggled to understand. Now they do begin to get it more, I am being accepted and valued now. I have filtered out those who didnt and wouldn’t try to understand so I have better quality time.
It’s been very long and hard but one of the keys has been learning about myself, who am I? What makes me tick, how do I manage days when I just cant cope. One of the most crucial things has not been deciding on doing much until the actual morning but keeping people up to speed and explaining that has changed the dynamics and made it easier. In fact last week when I left the countryside project early, the volunteer manager said, I cannot imagine quite how hard this has been for you and you are doing so well, we can all see your progress now…….Bingo!!!
Report comment
I think the saddest thing for me is that after geing involved with psychiatry for over 40 years, coming off meds myself after all that time, now off 5 and a half years and through withdrawal lasting about 5 years, I don’t know of a single service user in my area who would ever come off meds as they have been so conditioned to understand they need them for life and if they reduce and become unwell it’s only ever seen as relapse. No one even suggests it might be withdrawal.
I’ve managed it because I had support of a psychotherapist who was open dialogue trained as I am and his referral to another psychotherapist who supported me for almost 6 years to get me through. They could both see that I had no sign of a “mental illness” but was dealing with trauma from my parents divorce from 50 years ago and awful family dynamics since. Once I was off it became clear that an awful lot of the problems I had were actually most likely caused by the meds themselves. Now my moods have settled right down, my anxiety so bad after coming off is settling and im beginning to see a light at the end of the tunnel.
It saddens me greatly that for the vast majority certainly in my local secondary mental health care area other services users, Dr’s, professional staff in the NHS just don’t ever consider wanting to come off. Plus unfortunately high profile cases in the media who have committed crimes after not taking meds leaves staff very risk averse in working with folk who might want to come off meds.
It’s only been my own research, understanding what’s happened with me and the sheer guts to keep going in spite of feeling awful so much of the time. I’ve also had to leave my job as I couldn’t cope, plus many friends and family who simply couldn’t cope with my emotional storm and fall out and simply couldn’t deal with the length of time it was taking so it was easier for them walking away. Sadly they gave no consideration or understanding at all to the fact that I might be finding it hard and very bewildered and frightened over what was happening to me. It’s taken a lot of reassurance from the Psychologists saying they weren’t seeing any MI but only a normal, natural reaction and response to the damage that’s been done to me by others.
Report comment
Sadly I now see the whole concept of the recovery model sitting firmly with the medical model paradigm. It seems to only see ones life challenges as symptoms of illness rather than exactly what they are, simply someone responding to the c**p that life throws at them in a way that maybe others see as “abnormal” and therefore a sign of an illness within them requiring treatment.
The recovery model sits within this as well, the quotes and understanding i read about simply state that recovery means living your best life within the limitations or maybe parameters of the illness. And it’s that last bit, only seeing ones different emotional response to the life they are experiencing as an illness that they need help to live the best they can in spite of it.
Well maybe we need to actually help and address people to work through their difficulties and empower them to forge ahead rather than tell them they are dysfunctional, need help, disable them, tell them the way they are is not normal. Who is to say what normal is anyway.? Similarly with anyone who declares they are atypical, well who decides what typical is and anyway I’m not sure, I, for one would want to be ever considered the same as anyone else, I don’t want to be “typical” to whom exactly?? Neoodivergent? Isn’t everyone on the f××××ing planet neurodivergent in the sense that every single one of us is completely different. It’s what makes humans the rich and wonderous beings that we are.
Stop boxing us up, labelling us and telling us because you don’t see us responding in what you consider a “normal” way there is something that requires recovery from, or to live in recovery from the box you have deposited us in and thrown away after being regarded as different from the norms you suggest are correct.
Report comment
Thank you so much Freya for your reply. One of the most problematic things about all of this is that by being “diagnosed” and labelled you are then seen as the problem. As most if society buys into the medical model paradigm, only seeing ones emotional responses to the stuff you are trying to deal with, means that others are absolved from any responsibility from anything they might have done and/or continue to do as they can always say ” what? Not me, they’re the one who is ill again.”
Now that I am off the meds and the longer I get away from being on them, I can see that an awful lot of the issues I had and that were making me ill again and again was in fact due to the meds themselves. Sadly though the medics only saw some of the issues as illness not due to the meds.
Loss is hard as well coming off meds. My family only bought into the medical model and the veiw was that I needed to take meds for life and would never believe that the withdrawal was real and instead only saw that i was ill because I stopped taking them. In so many ways for them to ever understand that it was issues from my parents divorce 50 years ago that was never dealt with is perhaps a step to far, it’s simply easier to blame me than to admit they handled things badly.
Across society now people are seemingly unable to admit when they get things wrong. For me sometimes if people can just hold their hands up and say im sorry I got it wrong and I appreciate the damage it’s done to you, perhaps, for me at least, repairs more than hours unpacking things in therapy.
So through this, even though family know I’ve fought through and remain of meds with even the Psychologists saying they don’t see any signs of the supposed mental illness but they do see me emotionally responding and reacting to what’s happened and that is completely normal and if they hadn’t seen any reaction they would have been more worried. My sister, the only one left, has walked away as she can’t deal with the fact and have to accept they got it all wrong.
I think Sami is brilliant, particularly over the problematic rise of autistic spectrum and adhd stuff as well as Anders Sorenson and his work on living life after meds.
In so many ways it’s been the emotional side of coming off meds, flooding back of emotions, my feelings of diagnosis and the stigma and damage that does etc.
I completely despair at a world that seems to only see everything in terms of wanting a medical diagnosis to explain the difficulties and challenges they face in life rather than seeing we are all different and respond to everything completely differently in our own individual and unique way.
Report comment
What feels so wrong is that by medicating people so much that you crush emotions completely, that emotional bluntness that seems one of the goals supposedly relieving ones emotional distress and response to life’s challenges, you take away the richness of life in terms of how each of us interpret and experience what life throws at us beit good or bad/difficult.
Whether this is being done in terms of “being kind” so relieving someones emotions, particularly if they are deemed more extreme perhaps, or maybe the clinicians themselves find it too distressing to sit with/be with someone going through tough stuff so easier to shut it down with meds im not sure.
But whatever, shutting down ones emotional responses to life artificially, seems to me immensely cruel and takes away life’s rich tapestry of feelings that we humans can experience.
Plus when you come off meds after so long, as I have, coming off everything after 40 years, that flooding back of feeling has been so hard to deal, with and I feel real anger at not having learnt the skills along the way to manage emotions, plus now dealing with things that were closed off 40 years ago is indescribable cruel in so many ways for clinicians to have allowed that to happen.
One should get the help to process stuff, not shut it off.
Report comment
I agree with that as unfortunately under the medical model a peer worker won’t necessarily have any “formal” clinical training and so they will never progress fully within a clinical setting. However I do feel they could progress within non clinical settings, training, service development etc where they can bring their own experiences of having used the systems to help and hopefully influence future design and delivery of services. That very much though depends on the perceived value of the experiences they bring, to the clinical staff and “professionals” they are working with.
The medical model im afraid is still so all encompassing within the whole system that i believe the “recovery model” itself firmly sits within this paradigm. The famous Anthony quote which states that recovery is …….. (part of quote!) It is a way of living a satisfying, hopeful and contributing life, even with the limitations caused by illness.
And the south London and maudsley nhs trust states …….Recovery involves living as well as possible.
Both these quotes in my view fit the medical model as they seem to be saying you have an illness within you that you will never fully get over but you can be helped to manage a life as good as possible.
Er hem…….not withstanding the fact that so often the meds themselves seem to hold you trapped within a kind of no man’s land suppressing emotions no you don’t react and cause any issues to those around you.
BUT maybe, just maybe if people were given targetted needs led support rather than diagnosis and a medical solution, so recieved some kind if counselling if needed, but maybe financial, housing, relationship help etc maybe delivered through the open dialogue model, then maybe we will get somewhere rather than only veiwing MH through the medicalising emotional responses to life events however different or “extreme” they may seem to others particularly those who sit in judgement in the Dr’s office deciding on whether what they are seeing is a normal response or not.
What is normal anyway??
Report comment
Capacity assessment is always decision specific even if you have detention or any other neurological capacity limiting illness. Having taught on training for staff who are approved MH practitioners and Dr’s on the interface between the Mental Health Act and the Mental Capacity Act looking at which one is the appropriate act to use when considering depriving someone of their liberty, a robust understanding of the assessment of Capacity is essential in getting the call right. With the MCA one might need to consider time of day due to effects of sedative meds etc. The decision that would be asked for the MCA is can the person agree to being admitted to hospital or somewhere. Depending on the response one would then have to decide whether they have the capacity to make that decision under the MCA or is it their actual psychological state that’s leading to the answer and that then encompasses all the stuff about risk, professionals perceptions of MH, power imbalances etc.
Is an MCA assessment likely to be done covertly? Not sure as its decision specific so if you were after them making a decision about something is it likely that decision wouldn’t be disclosed to the person and for what purpose? More likely ditch the MCA and detain under MHA. Law easier for them to manage in a way!
Report comment
I do think one could place uk firmly in this box as well. Working as a LXE advisor in a large uk mh trust having been bullied out of the Peer Lead role and then effectively pushed out of the LXE role in favour of volunteer lxe, the power imbalance is so huge that effectively the only thing anyone trying to work in the system can do us tweak stuff rather than effect actual change.
I think as well I found arguments within the actual lxe community about leadership as many don’t accept that leadership roles have any place within this work and yet we all build experience over time and part of that recognises that sometimes you leave some things behind as you no longer have direct experience in sone areas but develop different skills to engage, learn and work at different areas in the system. Surely everyone has a place to input in the system, each person has valuable input wherever they happen to be. It’s when you hit the clinical stuff that the arguments against the value of LXE work begin
Part of me feels that one of the most basic things is that clinically trained staff simply don’t value the understanding that comes from living with some form of mental distress or from experiencing the things that we are expected to go through when subjected to the various policies, practices, procedures and laws that unpin mental health systems in the west
My own journey of coming off all meds after 40 years almost 5 years of withdrawal, wiping out my diagnosis given 40 years ago and with a previous medical background I am still seen as someone who has little value when it comes to trying to improve services.
Generally if you tell your story and try to do your best, you get a pat on the head ist it sweet she’s trying hard!
I did read sometime ago that the pandemic had set LXE work back 10 years. I do agree with that as services just had the attitude we know best as go how to manage this even though they were still doing things that affected service users lives and simply refused to allow any input at that time in any decisions that were being made. It was almost as if we were stupid and wouldn’t be able to grasp any of the problems as we had no clinical understanding. Frankly I believe that time destroyed much off the progress that had been made over many years
Report comment
Great article and I like the suggestions of alternative questions that might be preferable. On my inpatient journey the word ‘ fine’ was loaded ……. “Yes I’m fine, ‘f***ed up, insecure, neurotic AND emotional’ all said with deep meaning
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