Assisted dying has become a hot topic.
For large parts of human history when people came toward an end, they might have been left in an outhouse by relatives or consigned themselves to a hut in the woods.
Children too. When born, Spartan children were taken outside and their hands placed on the eaves of the house – if they didn’t cling on, the bodies were discarded.
Marten de Vries and others showed some years back that it was probably once semi-normal for women to give healthy babies up at birth. When the woman already had more children than she could manage, perhaps because of straitened economic circumstances, it was not uncommon for her to give birth in a semi-public place and leave the child behind where it might or might not be picked up by another woman.
The bottom line according to Marten is that a woman doesn’t magically bond with a child. She makes a decision and its after the relationship starts that bonding happens.
Once medicine got involved in our lives in the twentieth century, it disturbed the informal ways we had of doing things.
Despite being obviously in the business of poisoning and mutilating people, doctors managed to hobble themselves with an idea that they were all about First do no Harm. Their professional bodies took it upon themselves to put a complete ban on any doctor being in any (detectable) way involved in helping people out.
Despite missing the many Shipmans in their midst, the public medical position was somewhere to the right of the Catholic Church who were comfortable enough with the idea of not too strenuously trying to keep people alive.
Now we have a crisis. Extraordinarily sad stories of people crippled with conditions like Motor Neurone Disease (MND) – something no-one in their right mind would want to live with or die from – confront us. Is it right to deprive people in this state of a dignified exit?
New twist to a new story
The exit narrative has taken a new twist lately. Patrick Hahn, an American science writer, interested in the latest fuss about Spravato and treatment resistant depression, has picked up on recent cases of several young women in Holland and Belgium who applied for assistance in dying on the basis of having Treatment Resistant Depression (TRD).
The troubled 29-year-old helped to die by Dutch doctors
In January Aurelia Brouwers drank poison supplied by a doctor and lay down to die. She was 29.
24 & ready to die | The Economist
Emily is 24 years old and physically healthy. But she wants her doctors to end her life.
The suffering from Treatment Resistant Depression (TRD) is as grim as anything from MND we are told – by out there bioethicists like Udo Schuklenk. There is no ethical or logical basis for not letting people end it in a setting with their friends and family around rather than attempting to do so in a painful and lonely way.
What about Post SSRI Sexual Dysfunction – PSSD? There are reliable accounts of several people with PSSD taking their own lives in the course of the last year or two. Its the same for PFS and PRSD – post finasteride and post-retinoid sexual dysfunctions. Probably very lonely suicides.
Twisted molecules
Motor Neurone Disease asks whether we have to be at the mercy of our biology. Should the twisted molecules in a cancer be let kill us in an undignified way?
When the psychotropic drugs came on stream in the 1950s, the new world opening up was caught in the phrase twisted thoughts and twisted molecules. For many the hope was the new drugs would untwist the molecules of people who were otherwise condemned to a living death in the grimmest of prisons.
But now we have TRD – which didn’t exist before the new drugs in the 1950s. Even people with the most severe of melancholias, people who had be drip fed in hospitals or else they would starve to death, recovered after 5 – 6 months or so – without drug treatment. The big deal with the new drugs was we could get these people well quickly – cutting down the risk they had of killing themselves during the earliest phase of their illness.
There simply weren’t people, living in the communities we used to have who, permanently miserable and mentally tortured from a depressive illness, opted to kill themselves rather than face an unendurably grim life.
Modern drugs have created TRD just as surely as they have created PSSD. With all drugs, there are a proportion of people who will have the opposite effects to those intended. The problem today is that many doctors no longer understand this and facing someone who appears to be getting worse, they increase the dose of the very thing that is causing the problem or add further drugs into the mix, leaving the original treatment in place. Ultimately the “victim” is left molecularly twisted like a pretzel. And twisted too by the wall of denial if not frank hostility they run into if they so much as hint their treatment might be part of the problem.
See Something Stupid This Way Comes.
The drugs may be out of their body but the effects can endure for decades. Spravato (esketamine) marketed on the basis that TRD is an established disease entity, can only make this problem worse. See Ketamine – What’s God got to do with it.
Should someone with TRD then turn to an assisted dying program? Should people with PSSD , PRSD, and PFS, which likely have a very similar molecular basis, turn to assisted dying?
If death is the way out, what about a hunger strike outside a pharmaceutical company headquarters or a doctor’s office? Is there something about assisted dying legislation that means it has to take place somewhere private where you won’t disturb anyone?
A hunger strike appears to be a relatively pleasant way to die. It offers a chance for friends and family to gather round and do things to draw attention to the issues – raise money for research to solve the problem.
Withdrawing into a room – privatising your death – will suit the very people who have probably put you in the situation where death has become an option.
TRD is very different to cancer or MND. Or is it? Current estimates are that up to 80% of cancers are caused by environmental factors. MND – amyotrophic lateral sclerosis (ALS) in the US – is also sporadic for the most part. There is good evidence that statins can cause it and less solid but still substantial evidence that antidepressants can cause motor neurone problems that overlap with it.
Its a lot harder for someone with MND or terminal cancer to undertake a hunger strike but they could support someone with PSSD or whatever who could.
annie says
In January a young Dutch woman drank poison supplied by a doctor and lay down to die.
This is an absolute truth.
In the End, she chose medical personnel to end it for her.
This must have seemed respectable and dignified.
Is it morally acceptable to have ‘Doctors’ giving the cups of poison endlessly and without conscience to people who have not chosen to lay down and die’ who nevertheless as a direct result end up a savage death -immensely ‘shocking’ to everyone who knows them?
Anon says
This is vile. You should be ashamed of yourself, Healy. Suicide is never the answer. I knew a man who had PSSD for 13 years before seeing improvements. It’s never hopeless. Persistent doesn’t equal permanent.
JR says
Well I wouldn’t waste 13 years of my life in this lobotomized and castrated hell. Anyone that would live with PSSD for 13 years must have had a mild case. Not the full syndrome some of us have.
Anon says
Actually this guy had severe pssd for 12 years with no windows. He would try things to no avail and then would come back and retry them and they’d work. Be grateful for what you do have instead of bemoaning what you dont.
JR says
Yeah I’m very grateful to live as an asexual zombie forever. Just stay out of my right to die.
JR says
I have no emotions, no sexuality, no sleep, no appetite, no imagination, no taste, no smell, numb genitals, numb skin, dry skin, dry eyes, dry mouth, physical problems, etc. I have nothing to be grateful for. Good for the guy who let over a decade of his life pass in torture but I can’t.
And I despise the idea of people trying get in the way of my right to die peacefully.
Bob says
What if you suffer in torture for a decade but then after that we find a cure and then you have the best decade of your life? This happens to people. They are tortured for most of there childhood/or suffer in war camps in unbelievable pain and agony yet good things happen.
That’s a logical possibility.
Please don’t give up man, it’s definietely possible for things to get better. They did for me. I lived with severe depression for half a decade, absolutely vicious and relentless symptoms of anhedonia, depersonalization, derealization, severe sexual dysfunction, headaches, panic attacks, including genital anesthesia and ejaculatory anhedonia. Please look at the recovery stories I shared in a different comment.
It can get better. There is hope for you. It got better for me. It got so much better for me.
I’m not cured of my problems, not even close, but I have improved greatly. I went from hell and torture this year and was hospitalized for suicidal ideation and called psychotic for talking about PSSD and was told I needed anti-psychotics and anti-depressants to feeling significantly better.
Don’t give up. You owe it to yourself to try everything possible to get to the happiness you want.
Julia says
I have same. No feelings, no imanigation, no thought functions, numb genitals. So ready to leave this shit.
Patrick D Hahn says
@anon: https://en.wikipedia.org/wiki/Irony.
L says
I know the case of an Italian boy who killed himself because the PSSD made his life too intolerable.
He was the first in the Italian web communities to denounce the PSSD and there was a period in which despite his desperation for having lost his sexuality and any human emotions and feelings, he gathered his strength and worked to try to do something useful, inquiring lucidly and searching for other people who suffered from the same misfortune, to join forces and try to push medical research forward.
When he did not resist after a year, the people commented:
“Poor boy, depression kills!”
What would have happened if this boy had shouted to the whole society his truth: “I kill myself because the drug destroyed my life leaving me with the PSSD, in medical negligence and without any cure”.
And what would happen if one could convert the force of despair into an audacity unexpected even to oneself, becoming fighters in the name of a truth?
Many things could attract media attention and therefore people, organizations, associations that could help. But many of us, despite something so grievous and unjust that has corrupted the quality of our lives, are still so timid..
Johanna says
I do think the problem of “TRD” has a LOT to do with that (sizable) minority of patients who “have reactions opposite to those intended.” Which includes akathisia, extreme PTSD and psychotic reactions. But I also think the problem goes WAY beyond that. Long-term users of these meds are suffering from the intended effects: emotional numbing in all its forms.
Most “TRD patients” are not ceaselessly agitated or suicidal. Instead they have watched their lives slowly dwindle, both pleasure and purpose ebbing away. They are often less oppressed by their feelings per se than by an inability to feel. And most of the “euthanasia deaths” of Dutch and Belgian citizens with TRD are not impulsive affairs — not at all. They are months-long adjudications in which the opinions of doctors take center stage.
If my own doctor had endorsed, supported, respected or advocated for my right to choose suicide years ago, I would be dead today. I have no doubt whatsoever about that. That’s why I feel strongly that we cannot fall into the trap of agreeing with those doctors that our lives, or our loved ones’ lives, are not worth living. Even if we point the finger at the drugs instead of the illness.
David, you’ve said many times that a drug is a chemical plus information. What we have in this case is a hazardous chemical combined with completely poisonous “information.” The ideology of Chemical Imbalance, developed to promote these drugs, is not merely mis-attributing the blame for suicides that would have happened anyway due to drug-induced misery. It is actively leading people towards despair and death. Both by labeling drug withdrawal as resurgent illness, and by extinguishing hope.
Perhaps the death of Dr. Ben Shaffer (see September 2018 post) was due mainly to akathisia and related effects. But it was also hugely influenced by the verdict his doctors delivered: Ben, you have a chronic severe mental illness. These drugs are your only shot at a semblance of a normal life. Without that verdict, I think there’s at least a chance Ben would still be with us. And I wish he were.
So when sufferers tell us they want to die, we should not say “OK, I understand. But why don’t you take your life in a way that will make a real difference? Be the Bobby Sands of our movement — go starve yourself to death, or blow your head off on the steps of GSK.”
Hell no, we should say. First of all, the protest suicide of a person labeled with a psychiatric diagnosis is unlikely to make so much as a ripple. Perhaps Bobby Sands did not die in vain — but you definitely would. (And BTW, if you think Bobby Sands’ death was a pleasant affair, it wasn’t – it was slow and dreadful.) But even more importantly, YOUR LIFE MATTERS, and it is not over.
JR says
Totally agree with this article. I have PSSD and have my Dignitas memebership. I hope I am able to go in a peaceful way. Those who have a problem with this article probably don’t get that PSSD, PFS, and PRSD are a lot more than sexual problems. It’s a form of brain and nerve damage period and will destroy your humanity in every way. Like a lobotomy and castration.
Dr. David Healy says
The article doesn’t advocate suicide or assisted dying. It advocates getting in the face of the people who have made life so miserable that people contemplate suicide. This seems to me too passive – doing what they want you to do. The thing is its not a few people. The overwhelming majority of people with so-called TRD are in the same boat. There are enough people to make a difference. And hunger strike to the point of death are not the only options – a hunger strike is just a place marker for the many things that I am sure people can think of
D
Bonemonth says
People can definitely think of many things – to get right in the faces of the people who’ve caused all this:
– Start up a Pharmaleaks version of Wikileaks where unethical and immoral practices can be exposed through document leaks.
– If an ethical employee were to LEAK IMMEDIATELY certain documents – that would benefit humanity
– Get onto TV. Get onto radio. Get into the papers. Growing numbers are sick of this disease and are getting in the hostile and vile faces of the people who caused this problem.
– Set up YouTube channels; set up podcasts; write blogs.
JR says
I understand but assisted suicide should be available for these types of neurological conditions. And the worst of this syndrome is awful enough that I can’t stand being alive anymore. It drains you of your brain, emotions, sleep, sexuality, body, taste, smell, touch, etc. I’m too drained to fight. I just don’t want to live in this torture anymore.
Petra says
I suffer from severe chronic illnesses including MECFS. ME is simular to many of these conditions in that patients are routinely neglected and left to die and many commit suicide as a result. My position is that staying alive and fighting is always the most powerful thing we can do. But that doesn’t give us the right to take away peoples choice to die. Surviving with these illnesses is a torture that is unethical to force upon anyone. Surviving is an act of protest. But it is one we cannot possibly force. It must be chosen by those who fight, day and day again. For those who cannot continue on, a dignified death is the ethical thing to allow, and for people to try to make those deaths matter even when they cannot continue doing so in life is still a noble goal.
Julia says
Did you get approved tp assisted death in Dignitas?
Bonemonth says
– Your website needs to become like the Zerohedge of pharma news. It needs to become an aggregator. Anything bad to do with pharma – especially news focused on Accutane, PSSD, PFS – collate it all in one place. Collate it along with any negative financial news about the share prices of those companies. Aggregate all of that in one place.
Johanna says
I figured you did not actually mean what you said, David. But the comments above worry me, and I really hope they worry you too. This is not a metaphor, a place-marker or a thought experiment. This is life and death, and our words matter. Your words especially.
I know from personal experience how seductive the thought of a “meaningful” death – a life not merely thrown away but perhaps given for the benefit of others somehow – can be to someone wrestling with suicidal thoughts. Especially when you’re in awful, demoralizing pain and have considered your life meaningless.
The suggestion that refusal to go on living in this state is a brave assertion of your dignity – and that to keep going is to somehow surrender that dignity – also has a toxic power. So does the taunt that if you do choose to go on living, it must not be all that bad, eh? So does the thought that you will at least have “proclaimed your truth” in a way you failed to do whilst alive.
These are all powerful ideas that can turn a person towards death. Especially when the suggestion comes from a loved and admired figure such as yourself. So for Christ’s sake will you stop and think?
Bonemonth says
This Peter Schiff character is an inspiration. His attacks on financial services and banking are like what we need to do to pharma.
Where’s our Peter Schiff?
https://www.zerohedge.com/news/2019-03-31/peter-schiff-permanent-debt-monetization-dollar-collapse-next
mary H says
I guess this topic could be answered in so many ways – and, at the end of it all, we’d still find ourselves just as far from a ‘one answer suits all’ result.
It’s fine for people to say that every life is worth living – but surely ‘life’ should be something a little better than a ‘living hell’? How do I have the right to decide that someone else’s life is worth living however difficult the situation? Or, if it’s my view that a person’s life cannot possibly be called ‘living’ in the true sense, should I really be allowed to stand judgement as to whether or not that person should die?
Moving on, we come to the position of the person who knows exactly how their body is going to degenerate and the horrors that go with those thoughts. Should we deny their choice of requesting a dignified end to their life’s journey?
To my mind, when we come to think of PSSD etc., we are in a completely different field. Here, it is not a case of the ‘unfortunate turn of life’s dice’ that we are looking at – rather, it is the hold that one section of society has over another. There is no way that we can pass these conditions off as ‘natural human disasters’ for they are man-made and man-swallowed in the perfect trust of one person in another. Of course we should be able to think that, with hindsight, no doctor would ever have given us such a life sentence or such a cross to bear. Unfortunately, it is very hard for us to think in that way due to the arrogance that is so often displayed when we dare to question the reality of what is going on.
There is a never ending range of examples that come to mind – the answer though, I guess, would always be the same – and that is that only if we’d walked in their shoes could we possibly have the right to declare that their wishes were ‘right’ or ‘wrong’.
As for a public demonstration, to move the realities (as we know them) forwards – that is a very difficult question to answer. I guess that the ones who would be noticed – the ones who should be most vocal – are the very ones who find that living life, one day at a time, is just about as much as they can manage. What would the public make of those ‘realities’ if the rest of us went chanting up and down Westminster way, as we’ve seen happen over Brexit here in the UK over the past weeks? The answer, I’m afraid, is that there would be very little engagement with us – far safer for all to stay well away rather than have to face the truth.
Here in the UK we have a severe problem of knife crime at present. Now we’re told that teachers, doctors and the police have to notice and report to the authorities,any youngster that ‘may turn out, eventually,to be involved in knife crime’. An impossible task for sure! No-one has thought of insisting that we look at WHY so many youngsters are choosing this way of life. In the exact same way as no-one has thought of looking closely at WHY so many of us are in need of support in coping with our daily lives. Rather than looking at the problem and helping at source it seems to be far easier to throw the blame at individuals – whether they be ‘youngsters likely to lead a life in knife crime’ or ‘youngsters likely to lead a life on pharmaceutical prescriptions’. Many lives are lost in so many preventable ways but very little notice is taken of the real reasons behind their deaths. Shame on us!
Bob says
David, the PSSD community doesn’t seem very happy about this.
You should be more careful about what you post.
http://www.pssdforum.com/viewtopic.php?f=10&t=2748
You should pay more attention to the many cases of improvements and post more about them on your website instead of articles like this.
I have a fairly bad case of PSSD. Not the worse, but still quite debilitating. I’ve lived with it for 6 years but I’ve Thankfully had a Few nice windows of improvements here and there and had a temporary boost from Wellbutrin.
I wanted to kill myself 4 months ago and was hospitalized for suicidal ideation. I was certain I wanted to die. But after getting out of that hell and learning to accept this awful condition but yet have hope for the future, i’ve Realized I can keep going. I am in control of my suffering to some degree.
Please be mindful of what you share here, your intentions seem positive and you’ve done so much for our community in terms of spreading awerensss but you’ve ignored so many forum reports about improvements even in your academic papers stating things like “user’s on online forums have tried everything from serotonin antagonists to dopamine agonists and hormones but nothing works” that’s just incorrect. Many things have made a difference for many sufferers like Estradiol-17b, cabergoline, Mianserin, etc. Heck, one person even improved there anesthesia/anhedonia, unusual symptoms of sexual dysfunction, with cognitive behavioural therapy. That doesn’t look like “nothing works” to me.
http://www.pssdforum.com/viewtopic.php?f=20&t=1120&hilit=Lost_soul
https://pssdlab.wordpress.com/2019/02/18/re-towards-improving-post-ssri-sexual-dysfunction-by-using-nutriceuticals-lessons-from-a-case-study/
http://www.pssdforum.com/viewtopic.php?f=5&t=419&p=7898&hilit=Psychotherapy#p7898
https://sexualmed.org/forums/topic/1335/
https://pssdlab.wordpress.com/louis-syfer-mianserin/
Paying attention to the stories of improvement and recovery, trying to connect with my friends and family who care about me, and not terrifying myself with articles about assisted suicide and PSSD being the “modern curse of the hom-dai” has helped me a lot more.
PSSD like symptoms were reversed with DHT and Estradiol-17b in make rats that were treated neonatally with clomipramine (SNRI trycilic)
THERE IS HOPE
https://www.ncbi.nlm.nih.gov/m/pubmed/25449595/
Katie B-T says
My take is sometimes when someone takes their life due to a drug injury, they are trying to call attention to what was done to them and want their death be a statement against the harm. But I think what David is saying is that there are much more effective ways to make a statement than to go kill yourself privately. A suicide would mean very little to the people we want to influence, while costing a life and destroying countless lives of those around the deceased. We are worth more alive than dead, making lots of noise—for years and years—not just one final day.
annie says
This post is spectacularly firing, and I wonder how many people have actually read it?
The ‘crazy’ man who has developed a RxISK site for the benefit of all – for the very people who feel that medication has played a big part in their various damages
The RxISK Prize hovers at $60,605, not bad for a condition that is medically unrecognised
RxISK recognises this condition as one of the most serious impairments to human life that could be possible to imagine
Playing to the tune of immense anger and disappointment and what is the point of going on is something many many people face when faced with acute no light at the end of the tunnel tragedies
I have always wondered how David deals with the daily load of distress coming at him in droves but until this latest post, I had never seen outright hostility from the very people he is trying to help
There is no way in god’s green earth that you are being told to take your life at Dignitas or take your life through a hunger strike or take your life out there in the lonely woodland
He is throwing up an intellectual argument by putting all the cards on the table and this is why he is being so honest with the comments
He has a huge responsibility with RxISK which has grown and grown and which offers so much support to so many people, I could have been lost without it and I know that a lot of the old timers and the new timers feel very much the same
Only by having all these different views out there for us all to see, can this debate take place and what a debate it is turning out to be.
We have all been generous with the RxISK Prize to try and help and we have been told that some sufferers from this horrendous condition are working with David behind the scenes to try and find a cure or at least some leads as to what is actually going on
We all want what you want and we should never play in to pharma’s hands by shooting the messenger, but, I am sure David is too long in the tooth for that
Contrary to what some people think, I think David Healy does stop and think, he just wants to hear all opinions which is what he has always done and is one reason why he has thrown up this article, so that we can all think beyond the usual middle of the ground nothingness –
The whole farce of politicising mental health has gone way too far and it is always to RxISK I turn when I want my mind to get bigger and learn about all sides to a discourse, so I guess with this post we are all learning a lot about ourselves, healthy discourse, and the right fit for our own personal beliefs –
Pharmaceutical companies make vast sums of money from people ‘dying for a cure’ …
Laurie O says
Decades in for some of us with drug injury, this post addresses things many of us have spent a fair amount of time thinking about. Gives us room to be okay, not freaks alone in our rooms with unacceptable thoughts.
Hope-talk isn’t the answer to every problem and at times it can make things worse. Sometimes relinquishing hope can be the sanest response and this doesn’t mean you will end your life. (But I might end yours if you keep offering me shit like chamomile tea).
I’d like to coin a new term. Hope-mongering. Adults facing serious issues don’t need or benefit from these knee-jerk reactions. Let’s contemplate reality for at least a moment.
Johanna says
Dear Laurie, I’d like to ask you to consider not adopting the term “hope-mongering.” At least, I really don’t think it’s an epithet we should deploy against each other.
Is there any hope for us? That’s complicated, and the jury is still out. Some people have recovered completely. Some have recovered partially, but continue to grapple with the damage done. Some haven’t recovered at all. All of us, I believe, are serious adults and are telling the truth about our experiences. It’s not easy to divide us into “outsiders” and “those of us who have been there.”
If anyone thought I was dumping on David for daring to suggest that “things could really get that bad,” I apologize. I sure did not mean to. Because I know they can, and they have, and I don’t know what I myself can reasonably hope for, and yeah, the question of “checking out early” does haunt me on a regular basis. It is not a theoretical or symbolic question, it is a 3 a.m. question, and it did become a bit of a 3 a.m. question for me last night in the wake of this blog. If I got a tad shrill, well, that was why.
For that reason, I can’t apologize for saying we should be real careful about putting in a good word for suicide. Especially as a way to advance the cause. The idea of “giving your life to expose injustice” in this way, when you feel like your life is otherwise worthless, has a powerful appeal. It is a real thing, and people have done it. In a very few cases their deeds had an impact. But 99% of the time we don’t even know their names, because they made no difference at all – they were written off as mentally ill, or fanatics, or both.
Maybe we can agree on one thing: this column was spectacularly mis-interpreted by many people. Some of the stuff people said about David was unfair. Some of the stuff people said in his support, like the brother with the Dignitas card, was probably not what he meant. But hey, even that is useful feedback to have. And one thing I have always valued about David is that he’s never demanded agreement, much less a loyalty oath, as the price of admission to this circus. If he had, lord knows I’d have been kicked out a long time ago. And I want to stay.
Laurie O says
Johanna, I’ve always admired your ability to share your point of view even when it contradicts the flow of stated ideas. I absolutely value your contributions. My comment wasn’t personal to you or anyone posting here and was more an expression of frustration with experiences I’ve had, as a caregiver of the dying and of course my own experience with drug injury. Hope mongering is a form of denial that serves the needs of the one imposing it and is about as helpful as a doctor who is not listening. I’m not really serious about coining the term, but there it is!
Laurie O says
Also, as a side note Johanna, at our meeting this evening someone asked about the new ketamine drug so we read your recent Rxisk article. Everyone found it eye opening and of course disappointing.
While reading, it hit home what you must be dealing with, and it struck me how much different it is to consider your story in the context of reading aloud to the small group as opposed to simply reading online. It’s easy to read quickly without much pondering and then throw out a comment perhaps carelessly, words that that might affect people in ways unintended. So thanks for speaking up to add some balance to this important issue.
I am Woman says
PSSD is a terrible affliction, as is SSD, My heart goes out to those that would rather not live.
PSSD and SSD affects women too. Unlike MND other Cancers, PSSD is excruciatingly difficult to talk about, its goes to the core of who we are and how we relate to others. We can look amazing, have the right six pack, muscles, smile, curves…….but inside we are hurting…..maybe even ‘dying ‘.
Women however will talk about it, in my extended family 5 Women and 3 men are on anti-depressants, 2 woman and 4 men in the extended family are not on prescribed medication. My nieces, sisters, sister-in-laws…talk about their sex lives…..or complete lack of it….They too will express deep concerns about their men
Who are suffering behind closed doors. Brothers, brother-in-laws, nephews do not talk even to each other…..and barely to their partners…….Its time to Woman up….Sexual dysfunction and Suicide seem to be society’s massive taboos……
mary H says
I really cannot see what it is about this post that is causing some to be asking David to “take more care” of the language/context of such a piece. What I take from it is, simply, this – so many are driven to a state of being unable to carry on; to being unable to ‘carry on with life’ (rather than of ‘wanting to die); knowing exactly WHY their present state is as it is but UNABLE to shake the authorities awake to the reality of their suffering; of, possibly, wanting the end to be ‘the end’ rather than seen as a ‘cry for help’ if things go wrong. We, who have an interest in such topics, know that this is happening but we’re failing to get the message through to the rest of the world. Those lucky enough to have energy to fight, do so in their own little corners and get nowhere; those whose lives end because of their suffering, die without the world accepting that their suffering was preventable. All of this seems to be such a waste of energy because it happens in ‘pockets’ and goes unnoticed. Together, moving as one, we should stand a better chance of breaking down the barriers.
I find it such a disappointment that the Risk Prize Fund seems stuck at a little over $60 000. The hope was to reach $100 000, hand it over to someone who came forward with a possible cure for PSSD etc. and, as a result, rock the world with the news. Maybe we need an update on any known research or near-breakthroughs known to RxISK in the hope that the knowledge may reignite our fund raising?
The Antidepaware website has a wealth of information showing the devastation caused by psychotropic drugs (mainly ADs). Maybe it’s time to publicise such cases further in the hope that reading about such tragedies throws a slightly different light on matters? The stigma surrounding mental health issues will only disappear if the whole truth (good AND BAD) about psychotropic drugs become topics of natural conversation – that will NOT happen if we’re only comfortable with hearing half of the story and, possibly, sharing even less than that with others outside our comfort zones.
susanne says
Some of the critics of David’s post are actually stating what he is saying over and over again – some medications work for some people – others are horrendously harmed to the point of preferring to die rather than suffer the horrendous effects of the drugs. Their effect is unpredictable and that is undeniable. As is the inhumane way people who report the side effects are treated by so many healthworkers. The ‘community’ referred to is only one group of people with a shared angry response to the idea of an assisted death. What we are hearing again is an attempt to silence views unpalatable to some but understood by others Rather than promote the medications only some have found useful the Rxisk prize is seeking for answers It is a pity those who are very critical have not shared their experience and knowledge on the blog before but have only now added comments . Of course people need hope but for many the reality is despair. False hope will do nobody any good. Using the Rxisk blog might tip the balance into hope when so many are seriously telling the truth and looking for answers.When Dylan Thomas wrote do not go quiet into the night he was raging against death – David seems to be raging rightly against the only option to suffering a miserable life is quietly dying out of sight out of mind. Not so long ago eugenics was not such a dirty word (and still isn’t in some circles) The drugs used on unsuspecting people without proper consent is hardly more than potential sterilisation of people A thought many with mental health conditions have suspected when earlier drugs were being used ,and still hold in UK and other ‘civilised’ countries. It used to be talked about more a few years ago. Another unpalatable thought. For myself the only assistance I want is the best method – there are web sites and books but those who have access to the best method are too often promoting a medically controlled death even with input from a judge. It’s my life and my death – too many want a piece of the action in our deaths however it comes about, With a shout or a whisper, our choice.
Fiachra says
I have an idea of how this 24 year old lady felt, and why she tragically believed that she would be better off dead. I’ve had the experience myself of Neuroleptic drugs breaking my brain in my early 20s, and sometimes even now get very mild flashbacks, at the age of 58.
Yesterday, I was very unhappy for a few hours because life seemed convincingly dreadful. Today my reality is the exact same as it was yesterday, but I’m fine – because I was able to change my interpretation of my own reality (to neutral).
Dr Wayne Dwyer in his famous book (link below) said “you need never worry about anything”
https://youtu.be/VaM5L-z5Kgw
But, when a person’s brain is broken, the doors can shut behind them – and this has to be factored in.
annie says
Fiachra,
I think you travelled a long road and grew in to maturity of thought which comes to us as we heal from something traumatic or as we deal with the cards dealt?
“What that person thinks of me is more important than what I think of myself” – Wayne
The only time in my life that this thought entered my head was from the treatment of a doctor.
At no point in my career mixing with sales directors, sales managers, sales representatives, and all these were men at that time, (70s+), did I ever devalue myself.
I learnt from these males, driving their careers, not a whisper of self doubt in their make-up.
I was dead confident, and fitted in to this life like a glove.
The doctor was a woman. She was older than me, she was not attractive in the usual sense of the word, but, as she came in to my life everyone thought she had a ‘wicked’ sense of humour, suffered no fools, was pointed and direct and made no secret of mocking her patients “most of the people who come to see me just need a day out shopping” she would cry in exasperation…
She didn’t like whingers and slackers. She herself had had a hard life and it showed all over her face. It was lined, and almost yellow.
She was old fashioned and old school and chain smoked. Her house was also yellow
She delivered lashings of criticism with a vitriol I had never heard before.
I crumpled and died, inside
May be it brought back memories of parental scolding, not often, maybe it brought back memories of teachers hurling wooden blackboard rubbers at unruly pupils and going along the aisles twisting the ears of boys. I don’t know.
But something happened…
And from this woman came other woman and from this woman came other men and before you knew it a cascade of medical persons were questioning every single aspect of my life and it grew and it grew and it grew until I grew mentally weak under the pressure and for the first time in my life, doubt crept in.
When I was with the psychiatrist with acute akathisia from Seroxat, he asked me if I would like some positive thinking cassettes. I had crawled to the appointment in the hospital, and crawled back home to bed, took some more pills prescribed by the doctor, and plugged in my Sony Walkman.
The softly spoken male audio – the power of positive thinking
The nurse told me to blow in to brown paper bags
Someone was despatched to the local shop to get brown paper bags
We had moved out of the family home, me, my child and the dog.
Away from the doctors, I could rebuild myself, no pills, no wonderful garden, no room for my art, no playroom to play and all my life, gone in an instant.
I did the hard work of reclaiming my life and I did it my way.
Cleaning, gardening, whatever, to support us and it was the people I worked for who were so exceptionally nice and thankful, that my confidence inched its way up.
The episode with the Headmaster who revoked my child her academic future blew it all away and I realised that I had to garner every strength I could muster to oppose him.
If only I had done this with the doctors…
“You are a choice-making individual”
This is true, Wayne, but, bending to medical professionals is a totally different ball-game, when they are juggling the balls…
I think we have to look in to our souls and spend copious amounts of time on reflection, although, of course, there will hardly ever be a conclusion …
Fiachra says
Annie, Thank you for your supportive words. I’m glad you lived to tell your story.
Link says
So we should just give in and let pharma win? This is disappointing Healy.
You should be out there campaigning for us, getting a voice out to the media. It is time the public were made aware of anhedonia and PSSD. Not writing defeatist articles such as this.
Good morning Britain are always up for a controversial debate. Why not try and raise the issue on there? Or another prime time slot. Not assisted suicide obviously, anhedonia and PSSD.
annie says
Do you or do you not want high quality research. Have you any idea how much time and energy is spent by RxISK on PSSD.
Do you see Pharma doing any research
Have you spent your entire life expecting other people to campaign on your behalf
Do you take responsibility for your own condition
Is the RxISK Prize not enough for you, the videos made, the sheer amount of posts on the subject
RxISK is covering almost every aspect of dodgy medications, have you any idea how much time and energy is spent on ‘our’ behalf
Why on earth should David Healy campaign on your behalf and do all the work
Piers Morgan, on Good Morning Britain, you have to be joking, the man has an ego the size of a Morgan, there would be titters and asides, this is his ‘charm-offensive’, do you want ridicule or do you want serious scientific conversations
Now, if you suggested The Life Scientific that would be a better move, but, maybe premature, perhaps better when the cure is found as this programme heralds brilliant scientists who have made enormous strides in their research fields for the benefit of mankind …
You should look before you leap …
https://www.dailymail.co.uk/video/tvshowbiz/video-1897582/Video-Good-Morning-Britain-host-Piers-Morgan-jokes-massive-organ.html
Link…
Bonemonth says
Read it a little more.
susanne says
Good thing the comments are being moderated perhaps or ‘LINK’ might have had a ruder awakening – thanks Annie.
Something which resonates in some ways with the way sexual problems are ‘treated ‘ is the decision by a top woman cyclist to speak out about the damage caused to womens’ genital areas by lack of research into the design of saddles and medics ignorance -( she included one unsavourary comment from a surgeon she consulted). Hannah Dines kept silent for many years until recently but discovered many other women are talking about it amongs themselves but – ‘silence, secrecy and shame exacerbate the problem’. She has eventually found an expert who can help but those who post on Rxisk to share their experience and knowledge have been let down by the medical establishment, Funding is still needed for research via the Rxisk Prize – details on this site.
Bonemonth says
This is a problem known to men, too.
Men get problems with prostate and erectile dysfunction risk due to saddle design.
Some seats were designed by men to resolve it. But obviously that was only for male anatomy.
We are all in the same situation.
This should have been done for women, too.
But we didn’t get there yet.
Heather R says
Funnily enough, I’ve been today at a meeting of a small group of people bereaved by suicide, alongside people who are in official positions dealing with the prevention of suicide. I’ve listened to their ideas, which are all offered, for the best of reasons, about ways of saving lives.
There are things I’d like to say to them, but can’t. Others talked of their desperation to get help for their children or siblings, who died. Of the system which is too stretched to offer anything meaningful or actually effective.
But I know why my son died. There was no hope for him, because Accutane had ruined his brain, and, following that, given to ‘help’ what could not really be healed, followed, over the ensuing years, Seroxat, Escilatopram, Venlafaxine, Olanzapine, Sertraline, plus a caustic psychiatrist like Annie’s doctor, finally rendered him incapable of any lasting possibility of living the life he had loved. He was insightful, he was a realist. He fought to cope, but there was no real medical support or understanding or admission of the truth about the prescribed medication, out there for him.
And after he died, I was GLAD for him because at last he was safe and out of pain. He was not the kind of person who could have done what he did any way other than quietly and without fuss. But his father and I have done all we could, over the seven years since he died, with blogging on a website dedicated to him, handing out leaflets of information whenever we can, and taking every opportunity to enlighten the media, tv, radio, newspaper articles, NHS forums, Government debates, even worldwide candle vigils on All Souls Night each year, to spread the word about what caused his life to become intolerable.
And we will go on doing it, for justice for him, in honour of him, and to ‘save others’ from what happened to him. But I do feel, currently, trying to be a realist like he was, that it is all pretty hopeless because those with power do not want to admit or hear what these prescribed meds are doing to some folk like him, who cannot tolerate them. And we are not believed by those who need to protect themselves, until it’s too late. We see the damage every week. It’s heartbreaking and enfuriating, to see the trust they put in their doctors, handing over control of their lives to them by swallowing these pills. They reach out for help, such a reasonable thing to do in times of stress, and find themselves pitchforked into something far worse. There’s no more we can do if they are unable to see what’s really happening. You almost have to experience the suffering, or witness it close hand, to understand the full horror of it.
The balance of power is so massively skewed against the truth. I couldn’t go back and watch our son’s agony over the 11years he struggled to get by, smiling bravely for us whilst he battled the living hell of prescribed drugs that had been inflicted on him, purely, initially, because he had acne. He sure drew the short straw there. He was a deep-feeling, honest and quite remarkable person but as his loving parents, whatever we did, whatever we tried, we couldn’t give him back a brain that worked.
And we are so not unique. There are so many out there just like us. Wrecked families, lost futures. We meet them all the time. Some turned into activists like us, some broken and withdrawn into sadness who don’t want to engage. I guess my point in writing this is to say I completely get where David Healy is coming from with this somewhat startling post, but I feel despair about doing what Olly wanted, to really ‘save others’. Particularly when I hear recent radio programmes discussing these medications, even admitting their harms, but still promoting them as ‘better than nothing’, ‘saving lives’ and people accepting that they could be on them for life and not seeming too concerned about this. A clever script, accepted by so many as being perfectly reasonable in today’s world. But surely utterly tragic in its consequences. The Emperor’s New Clothes all over again.
annie says
You are not wasting your time, Heather.
What you say has to be said.
Here, and on David’s Blog …
Just wanted to say that the ‘caustic’ doctor was a GP who unilaterally ignored advice of Seroxat withdrawal from the actual initial prescriber, who was a psychiatrist. He had said in a referral that we had discussed the pros and cons of antidepressants, but, clearly not, as he wrote a pretty clear letter to the surgery, at the same time, describing blood levels and how to withdraw safely from Seroxat.
If he had told me about this letter, ignored, subsequently, by all members of this ‘medical practice’, an outcome would have been very different to the one that ensued.
This wasn’t just medical negligence, this was just plain stupid.
Then to be in his hospital from cold turkey and restarting a few pills, emergency, as it happened, and for six days I am left to my own devices. Even then he doesn’t refer to the letter he wrote, he doesn’t check my medication regime as done by the GP, who had added three Benzos and Betas off her own bat. At no time had this psychiatrist suggested additional medications.
Three days after leaving his hospital, off I go to another hospital, this time in an ambulance, not in my own car …
I got off Seroxat, like so many others, biting the bullet, months and months too ill to function at all and when the culmination of all my complaints lasting several years, the Clinical Director, told me he had discussed my complaint about the psychiatrist with NHS Highland and ‘we’ had decided there was no basis of complaint – well, really …
Heather, you have a complete handle on what happened to Olly, you were there, you saw it all and for writing it all down, so lucidly, for us all to listen to, where do they find these ‘obnoxious’ individuals, with their throw-away remarks. Where did psychiatry go wrong?
What are they doing in the Profession of Psychiatry?
It is incredulous how barbaric some of this stuff, is, and I banged on about it for so long to those who supposedly ‘had my best interests at heart’ that
“I found it impossible to talk of ordinary things”
tim says
Where was the EMPATHY, without which it is impossible to practise compassionate, patient centred medicine humanely?
I searched and searched for empathy whilst the most enchanting human being I ever encountered – my adult child – was misdiagnosed, detained and forcibly poisoned with drugs licensed via “academic malfeasance”.
Whilst she developed classical signs of neurological injury that even a first year clinical medical student would not have missed.
Whilst she was mistreated physically, psychologically, emotionally, spiritually, and socially. Left drug-wrecked.
I sought compassion for her, from those who were to ridicule my child and to ridicule my despair as her injuries accumulated and increased.
I sought care and compassion from those who had a DUTY of CARE.
I watched in disbelief whilst a card-shuffle-cascade of drugs, enforced for misdiagnosed akathisia, left her unable to walk, to talk or to smile.
There was no compassion to be found.
(I did eventually find dedication, commitment, empathy and compassion – without which we would not find such comfort and support in this blog. It seems elusive in psychiatric practice).
I found only contempt for daring to question, even though I had studied and practised medicine for several decades: Not infrequently diagnosing and managing organic brain diseases which produced the same clinical signs as did the “therapeutic” poisoning of our loved one.
Why will they not listen?
Not even listen to a parent who can demonstrate the indisputable clinical signs of the brain injuries that their terrible drugs have caused?
Why, and how can they routinely misdiagnose life-threatening adverse psychotropic drug reactions as:
“Emergent Serious Mental Illness” – – “Co-morbidity”?
They told me I was “a doctor in denial”.
They clearly suffered from “reverse-anosognosia”: –
They were unable to recognise the ABSENCE of MENTAL ILLNESS.
Can they not at least learn to distinguish ADRs from psychiatric labels?
Might they be taught to differentiate a toxic delusion from a functional psychosis ?
There IS an understanding of the devastating and life destroying experience which you so powerfully record Heather:
“Handing over a loved one to a hospital, to doctors and nurses is an act of trust, and you take for granted that they will always do that which is best for your loved one”.
“It represents a major crisis when you begin to doubt that the treatment they are being given is in their best interests “.
“It further shatters your confidence when you summon up the courage to complain, and then sense you are being treated as some sort of troublemaker”.
“It is a lonely place seeking answers to questions that others wish you were not asking”.
(The Right Reverent Bishop James Jones. K.B.E.)
Might we at least be afforded the BASIC PATIENT RIGHT of QUESTIONING, and of being listened to, without becoming blacklisted and case-noted as “trouble makers”.
If Psychiatry is Medicine – It is duty bound to honour The Duty of Candour, required of and often delivered by other medical disciplines.
Heather R says
Thanks for this clarification Annie, about your caustic doctor etc.
Seroxat too was what Olly first took after Accutane, because of low mood from the acne drug (which pretty much everyone gets – well, it’s a chemo drug as well, and we’ve all heard surely how low people feel on chemotherapy). Olly was all set for a First at Bristol Uni for biological sciences, top of his year, brilliant but unassuming, a kind friend to all who knew him. The world was his oyster. He exuded enthusiasm, fun, warmth. He loved wild life, nature, plants.
Seroxat, which he too went off cold turkey, left him shaking with fear, eventually taking nightly walks across Bristol suspension bridge deliberating about whether or not to jump. At the same time, wondering what the hell was happening in his mind. He’d ring us from there at 3am, saying he didn’t know why he was there, or what to do. We dropped everything and drove miles to reach him.
All our lives changed then, thanks to good old Seroxat. He left Uni, never to return, though the Dean and his wonderful tutor hoped he would. He was one of their best students. They couldn’t fathom what had happened to him. Nor could he, nor could we. We spent the next 11 years never at peace again in our heads, always on the KV for emergencies. We never slept without fear again. Nor did he.
Annie, you ask ‘what happened to psychiatry’, what are people like this NLP head trainer doing in psychiatry. I’d say, this one, the one it was Olly’s terrible misfortune to be assessed by, was suffering from a megalomania which no one around him dared argue with, for fear of triggering his well known rages if he was disagreed with. Even when we met with the Trust CEO after Olly’s death, to try to change the system, ‘learn from mistakes’ etc, this psychiatrist was not allowed by her to come to the meeting because, we gather, he was given to terrible crazy outbursts of frenzied fury, if criticised, and he would have looked, and made them look, complete idiots.
Is he typical of psychiatry today? I’d say, as far as arrogant self reliance goes, probably. But not many I guess are as quite as big a showman as he. I’d say Olly had terrible luck all done the line.
In a way, Olly’s death did make its mark, not because it was dramatic and on show, but because we MADE it a vehicle for protest afterwards. On http://www.ollysfriendshipfoundation.org.uk we have told his story, on the linked Facebook page we engage with SO many others. We’ve raised awareness. And we try to hold close those bereaved parents like us, by writing about their lost young there too, to make sure the tragedy of their deaths is put before the world to warn, to galvanise support. Anyone can read their stories, join with us, honour them, knowing that they never wanted to die, they were driven to it. They were brave beyond measure. All the more so because many were so young, so lost in worry and self blame. They couldn’t talk to us. They didn’t know how to. They couldn’t tell us if they had PSSD because they didn’t know it even existed. They just believed they were mad. That’s the thing that makes me REALLY mad with fury. The conspiring cruelty of it. That doctors and Pharma can do this to honourable trusting people, and still sleep at night. And no one in power will admit it, because they are all too afraid. What have we sunk to?
Heather R says
Tim’s comment says it all. His battle to save life, and ours, ended differently. It must have been even worse for him, witnessing the incompetence of the psychiatrists, and knowing, from his work with the brain injured, what was the likely result of their ineptitude. His description of the card shuffling of medications is so exactly right.
He knew what was happening. We thought we knew but were castigated for caring and began to doubt ourselves as AKATHISIA took hold and we didn’t know what it was. Our son slipped away from us.
I have collections of early children’s books in my library. In the 1900s they were full of warnings for children about dangers, like the little girl who called ‘fire, fire’ as a prank but then when there really WAS a fire, no one came to her aid and she was burnt to a cinder. These warnings for children certainly stuck in the mind. My grandpa, a warm hearted but astute Yorkshire GP, had a little rhyme he used for his young patients to make them aware of lead poisoning, which was prevalent before our paint regulations came in. It went like this….’Willie had a purple monkey, climbing on a yellow stick, but when he licked the paint off, it made him deathly sick’. Maybe we need some rhymed warnings for children now, or certainly for grown ups. About ADs and psychiatry, little natty mantras that stick in the mind. Quick and easy to quote. Little warning messages. We have other dangers now. But long diatribes are not listened to because ‘patience is no longer a virtue’. There is a 2 second window of interest amongst those at risk. We could capture it if we are clever.
tim says
I just love this concept Heather, so here’s an amateur attempt:
An Anthology of Psychotropic Drug Warning Poems For Children (and Parents).
Number One –
Whoops-a-Daisy.
Daisy saw her doctor,
She wasn’t really ill
But for “chemical imbalance”
He prescribed his favourite pill.
This caused much agitation, and restlessness, and stuff
Her hands were very shaky, and once gentle she was rough,
And angry now, and frightening, and tearing out her hair.
She terrified her family, for Daisy wasn’t there.
It was another person, created by that pill
But her prescribing doctor – denied it made her ill.
He gave a bigger, better dose, to make her well again.
But she had AKATHISIA and never was the same.
annie says
Tim is a poet
Writes as he knows it
Seconds in
Hear the din
The voices of reason
They sing to the treason
The anthem is shaking
The people are quaking
Lost in the motion
Found in the desertion
Speak up for the souls
Raked over the coals
Twisting and Turning
Broken and Burning
Burnt at the Stake
Turned out of the Lake
I call out for someone
To help me out
But no one comes
I drown as I shout
The 7 Nolan Principles for the conduct of public life that must be adhered to are: • selflessness • integrity • objectivity • accountability • openness • honesty • leadership.
Those nice people
Who look after me
Take so long
To right the wrong
They write their junk
And do a bunk
They have no idea
And talk out of their posterior
tim says
“Selflessness * Integrity* Objectivity * Accountability* Openness* Honesty* Leadership*”
Palpably absent in our appalling experience of unnecessary and life destroying “M.H.” systems failure.
As we’re Empathy* Compassion*.
But at RxISK and with its Founder/s – All above consistently evident: Thank you.
Carla says
Dear Tim, Mary and other parents who have lost their loved ones to these meds,
Words cannot express how I feel when I read what your loved ones had to go through.
I can never imagine what you have experienced as parents.
I feel for all of you.
It must be so hard to write about what your loved ones went through and what you had to witness.
I am relieved that you have RXISK to come to and are able to share, with us, how these medicines impact peoples lives.
I know, in many years to come, your stories will resonate with many people and I hope and pray, that out of adversity comes good.
I leave you with a quote:
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
~ Elisabeth Kübler-Ross
Dr. David Healy says
I don’t agree with this thought. Suffering like this is more likely to twist people than make them beautiful. This idea that it ennobles anyone is a bromide. It doesn’t.
D
Spiros says
I wish I didn’t agree with David; much my chagrin, I do. That has also been my experience. Sensitivity, compassion and gentleness have been there all along. They did not wait for a major illness or pharmaceutical-induced disability to spring into existence. On the contrary, these events—and the pain and restrictions they entail—stifled the ability to extend these qualities to other people.
Beautiful words are indeed beautiful, but sometimes not necessarily true. Even if spoken by someone like Horace:
Heather R says
Tim
Your poem is absolutely FANTASTIC. Nothing ‘amateur’ about it, it’s superb. The Anthology Title is perfect too.
When I wrote my ‘Matilda who called Fire Fire, and Willie and his monkey’ quotes, I hadn’t read David Healy’s next subject post, Rorsaarch etc, and had I done so I would have added this to the comment section under that as I think it fits better there. Maybe, if technically possible, DH could be kind enough to repeat it there too.. I think a book of Psychotropic Drug Warnings for Children and their parents, would be different, capture attention, and raise a bit of debate and some rueful smiles. What about it, Dr David Healy?! Contributors to this blog could send in their poems and between us all, we could produce a really good collection. Tim has set a very high standard. They’d need to be witty but hard hitting, just like his, and in the same genre I think.
In reply to Carla’s thoughtful and very kind comment, I can only speak for myself when I say that yes, I think my long life, which has been full of difficulty right from the outset, does seem inexplicably and enfuriatingly unfair but it does make me care about others and fight for them more than I probably would have if my life had been trouble free and winging along. I’d have maybe lived just for myself and my happiness. Suffering has certainly made me focussed on fighting for others, alongside fighting for myself, and above all, fighting for first my manic depression afflicted father, and then my murdered by prescripticide son Olly. I would like to think it has made my life more useful, less self interested. I do however get very frustrated when I have endless battles to achieve what I’m trying to do. I know there must be a way, but it’s keeping energised to keep thinking around the problem, and following trails which may lead somewhere, which is exhausting.
Because of my early work as a junior social worker who couldn’t change the system, (but when you are in your twenties you don’t realise how powerful the System is) when I moved out of London and married, I designed cards for Save the Children and later Gordon Fraser, and when he and my father both died, in 1981 I went back to my main interest, writing and illustrating published books for children. (www.georgeandmatildamouse.co.uk). Working in schools as an invited author. From my experience and observations when working with children, I do feel that much of today’s ‘mental illness’ problems start when we are little. We can’t explain how we feel when we are little, worries get internalised and carried for years. When they eventually surface as teenagers or adults, no one has time to listen, life rushes on, and we reach out to the GP and get 10 minutes and an antidepressant. We are already vulnerable, the pills just push us further away.
This is why some of us are trying to establish Centres all over UK where creativity plus listening support, can be there locally, to redress the balance. Some of these places, like ‘James’ Place’ in Liverpool, have psychological input (which is expensive), but ours will have children’s courses to attend with their form teacher, to get them to express themselves kindly and creatively, and offering other days working with teenagers, adults, doing the same. The friendships forged during these can be as uplifting as some counselling, in my opinion. There is more feedback. We are linking up with Prevention of Suicide charities all over UK, pooling ideas, listening…. the biggest difficulty we have is getting the point across in these resource groups about 1 in 6 not being helped, or worse, by prescribed psychotropic medicines. But we are working on it….
And new ways of looking at supposed ‘mental illness’ appear all the time. They are not ‘new’, to some of us, it’s just that AT LAST they get to be aired in the media. We see today on BBC Breakast today (BBC 1, 7.30 am and again at 8.15 am, Wednesday 10.4.19) that AT LAST someone is discussing PMDD, showing how some women can be so mentally affected by their hormones during the phases of their menstrual cycle, that they are diagnosed as bi-polar. Dr Katherine Dalton in her excellent little book ‘Once a Month’ knew this 40 years ago, which helped me enormously. Participants in the programme on BBC today said ‘ most doctors don’t know about it, you have to help yourself, keep a record of when mood swings occur, if it’s really bad, impinges on your life, go to the GP with the evidence.’ How many, one wonders, are ill and on antidepressants because of hormone imbalances. In the case of Accutane, and acne, it’s usually given at the time hormones are at their most unsettled anyway. Does anyone look at hormones and their role in mental illness?Are the RxISK Prize researchers considering this Dr Healy?
So, Carla, your words were lovely, and much appreciated. I think my suffering has made me desperate to change the system, although of course I’m not the idealistic young social worker anymore, I’m a hardbitten old bat who loves to write, paint, create and teach, to inspire, and who above all, wants results. And I wam not giving up anytime soon. So maybe Dr David Healy in his comment is right too.
Karl says
I think it can affect people both ways some people can face massive tribulations and learn alot from it and emphasise with people because off there experiences and do alot off good. Other people can end up bitter and take on narcissistic personalities and do alot off harm I’ve witnessed both outcomes.
I’m made my fair share off mistakes but without going into my life story haven’t had an easy run off things phisicaly and mentally abused as a kid by mums boyfriends lost both my parents in my 20s and lots off other things without going into it all. Because off the things I went through I decided to work supporting people with mental health problems for ten years from the age off twenty five because I thought I could relate with there suffering and could empathise which I enjoyed doing not realising at the time the impact medication had probably had on these poor souls I had yet to discover the reality off psychiatric drugs.I worked in a supporting role so had nothing to do with medication etc.
Anyway like I said before I have had many obstacles throughout my life but the worse thing that happened to me was when my doctor at the age off 20 gave me an ssri didnt know this at the time I was given it for panic attacks and told it was safe non addictive etc when I expressed my concern about taking tablets. Any way 13 years later I came off and that’s when the nightmare began I have never been the same for seven years since I stopped I take no other meds this drug destroyed me as a person I made more mistakes while on it than I ever had before and since I stopped symptoms physical and mental are hell every day no let up sometimes I think I must be super human to endure it I think actual physical torture would be easier.
Am I twisted and bitter yes because I survived everything life through at me but this stuff wiped me out and i done things while on it I wouldn’t off done got involved with etc .i was tricked being a vulnerable young person hook line and sinker.
Have I still got compassion love for people caring and can still empathise yes because even though every day is an absolute mission to survive and the b@rstards have stolen my soul I refuse to give up.
I think like David said once before the only way we can make a difference is by unity and us sufferers taking action and telling our story he might be our Moses but we have got to fight to be heard !
Carla says
Annie,
I love your poem.
I am Mr bad guy and this song describes me to a ‘T’
Everyone should be afraid of me!
https://www.youtube.com/watch?v=SKYp_3g6k-0
AC says
Teenagers love things that are shocking and rude…..
‘Anti-depressants totally SUCK
And worryingly F++k up your COCK
Anti-depressants get on your tits
And worryingly F++k up your CLIT
If the F word is too much put in Knacker.
Deirdre Doherty says
The article, to me, who may be considered a vulnerable person, didn’t advocate suicide or assisted dying.
All I thought this article did, on the front line (and God only knows the horrors heard), was hear those patients and acknowledge more of the difficult conversations we never imagined we would have but which the Powers That Be have, more and more, have simply forced us to have.
Regarding the complex Assisted Dying debate, when you have personally seen the devastating consequences as a result of the cowardice and selfishness in our refusal to have important conversations, or spoken privately to sympathetic doctors professionally and personally anguished that you brought someone in in horrific suffering to the hospital (for relief) as they will be required to ‘save’ the person’s life (really prolonging an agonising death) by prolonging their horrific suffering for everyone else’s selfish benefit, you are forced to think differently about the subject.
With regards to the longer term (and often permanent damage) to many bodily systems for some people caused by long term prescriptions of SSRIS (or cups of poison immorally given to people without consent slowly and endlessly and where I believe I was at risk of actual death by severe withdrawal induced hyperthyroidism post 20 years of exposure dependency before my rapid physical deterioration was caught), knowing someone who improved doesn’t negate the reality and experience of others with permanent difficulties.
It doesn’t negate the reality of those perhaps desperately looking for Nembutal online – if only, after witnessing or experiencing brutal forms of death or near death, for future peace of mind.
Many SSRI related deaths (many thousands more no doubt as a result of the longer term health or life consequences) if not to akathisia also happen no doubt as the victim’s only source of ‘protest’ ; even, ironically, as a desperate form of reclamation of their own minds and bodies, personal dignity, for some even illusory sense of ‘free will’.
Like Laurie, I know as well that others have felt that ‘going gently’ would make their death (also) a waste (and a convenience for the perpetrator). Rage, rage, into…more silencing. Worse than silencing. Who wouldn’t feel that?
There is no escaping the fact that many of those who lost their lives or almost lost their lives privately fighting the drug induced internal flames would have preferred, had they the ability and means, especially in the knowledge that this state was being induced in children and the military, to literally burst into flames or to end it visibly outside say GSK: externalising the internal, putting the personally and privately endured back out into the system that created it, and in the public interest.
Yes, maybe to little avail (also conveniently looking perhaps ‘crazy’) but to more possible avail and perhaps with more chance of the lost life ‘mattering’ or being in some way meaningful than whatever easiest ‘meaning’ will be quickly dumped on them by doctors or by the local town chatterers to make acceptable sense and to merely add to the problem of grossly misleading and convenient statistics.
God knows how many times desperate plans to generate enough awareness to perhaps save other’s lives or to make any decibel of noise and not an echo in the Grand Canyon of the news and social media, have been made in the privacy of a drug and body ravaged head barely able to understand IKEA instructions or to string a sentence together – or which may have been nervously shared (or screamed) to Rxisk, on the front lines.
I get how others responded but not as I took at all. I also feel mindful not just of the dead but that it has to be ‘OK’ for anyone, and not irrationally, to have felt or to feel that way and for those on the front line and the affected to be able to hear and acknowledge the realities some people have faced or are facing and to “fork lightening” by entertaining the intellectual arguments, about these realities (forced upon people, not desired by people).
Spiros says
Albert Camus in the The Myth of Sisyphus states that:
So this goes far beyond assisted-dying or euthanasia when it comes to sufferers of extreme physical or mental pain.
Some of the cures mentioned, like DHT and Estradiol-17b, target apparent hormonal shortcomings but do not address people whose side effects cannot be fathomed with any known blood or hormonal test, as the case is with most of the medication-induced sexual dysfunctions discussed herein.
As for David, for me he is a modern hero; giving a voice to the voiceless, the muted and the criminally injured by the Big Pharma.
Many people find it hard to realise how easy it is for a physician just to play along the current medical system and make loads of money at the expense of the health of one’s patients, and in so doing, fail to uphold the Hippocratic Oath and its critical dictum, “first, do no harm.”
This kind of dignity, investigative spirit and focus on the well-being of sufferers of such injustices is rare and should be cherished, to say the least.
fff says
The user with name ‘JR’ in this thread has died by suicide. RIP.
https://pssdforum.org/viewtopic.php?t=4296
susanne says
MyNorthwest.com
Surprising in a mainly catholic country
Portugal’s parliament backs revised bill allowing euthanasia
Nov 4, 2021, 6:34 PM | Updated: Nov 5, 2021, 6:37 am
BY ASSOCIATED PRESS
LISBON, Portugal (AP) — Portugal’s parliament approved a reworded bill Friday to allow euthanasia and physician-assisted suicide for terminally ill and seriously injured people, after a court blocked the initial version because of what it said was unclear terminology.
The legislation still requires the signature of Portugal’s president to become law, and he is known to have deep reservations. If President Marcelo Rebelo de Sousa signs the bill, Portugal would become one of the few countries in the world that permit the procedures.
Luther says
This Really hard pill to swallow