This continues the series of posts about the RxISK Prize. It lays the way for the RxISK Prize and Map which will feature next week
PSSD, PFS, PRSD and PGAD come with a heavy burden of stigma. This is a problem AIDS activists met head-on and conquered in an extraordinary fashion. It had never been done quite like this before by anyone.
In the early 1980s few people wanted to admit publicly they were homosexual. Almost no-one wanted to admit they had a lethal illness that could potentially be transmitted to others. But far from hiding in the face of this, the homosexual and AIDS communities came out fighting. They embraced the stigma. They didn’t quite change medicine as much as it needed changing but it was a landmark achievement.
From Biblical times on, the shame of illnesses have been closely linked to the Stigma of Sin and wrongdoing. Another gladiatorial arena in which stigma burdens one of the contestants starts in the playground in the form of bullying. Like illnesses from leprosy to AIDS it too affects identities.
We are in the middle of an international debate about Harvey Weinstein, as women, for the first time en masse, have come out and let their names be known, and been prepared to live with the possibility others will think they’ve been sullied because of his actions or the actions of other men toward them. This is not about sex – its about power. By acting together in the face of this power, the women at the center of this debate have raised awareness of the need to find a solution to the unbridled exercise of power.
The difficulties faced by sufferers from PGAD, PRSD, PFS and PSSD are in the same domains. There is bad physical damage and equally bad damage to an identity. The difficulties in working out how to recover are formidable and split along sexual lines.
In our culture women, afraid of being attacked by Harry Weinsteins in taxis or walking along the street at night, will often clutch a cell phone. The message is they are in touch with others and the bully or the rapist or the robber won’t get away with it. But this sign of apparent control screams fear and vulnerability.
In the same way women are prepared to say they are taking an SSRI. In some cases the message to everyone listening is they are in control. Taking their SSRI means they don’t breakdown in tears or become hysterical or an embarrassment to others. Everyone can relax.
The messages for men are completely different. Men might be inhibited from using a cell-phone when they possibly should. They are scared to show a weakness or vulnerability. They don’t want to let anyone know they are taking an antidepressant when maybe they had a good reason to do so. And they are very reluctant to talk about being emasculated.
In the late 1990s, Recovery became part of the healthcare lingo. It entered through psychiatry but has spread from there.
At its core lay the idea there are recoveries from illnesses like chest infections but sometimes we also need recovery in the sense of not letting an illness define us. In this sense, the paralysis from a spinal cord injury may never be overcome but the person may rise above it and not let it define her. In the case of disorders we can’t cure, recovery in this second sense becomes ever more important. In the case of mental disorders, which badly affect our identities, recovery in this second sense can be critical.
Many AIDS activists managed to achieve a complete recovery in this second sense even when terminally ill.
But Recovery is a complex issue. Its not just a case of closing our eyes and meditating hoping to open them again on some higher plane. In the case of women abused by Harvey Weinstein or other powerful men, speaking up is part of a recovery. It may help to lay the ghosts of a traumatic event to rest.
But the world still belongs to the Harvey Weinsteins. Men are still more likely to get scripts accepted, get plum acting and director roles, be able to form companies, and can go into auditions confident they aren’t going to be molested or be treated as slightly dim. Around a board room table a man will echo something a woman said earlier and will get the credit for this original idea. We have a long way to go to make a complete recovery from Harvey.
Something nearly as big a change in the world is needed to enable people to recover from Drug Wrecks. A Drug Wreck is a disease like AIDS, but it is also a consequence of an unbridled exercise of power of the Harvey Weinstein type, in this case deployed by doctors and drugs companies, a power that silences those who are affected.
And in the case of both drug companies and Harvey Weinstein and others, the power acts to keep the truth hidden through non-disclosure agreements. Just as with Harvey its not clear that a non-disclosure agreement in the case of actions by drug companies that have led to fraud charges is legally valid.
It looks like we can’t depend on doctors or companies or politicians or even the media to raise awareness of issues like PSSD. They have had these issues brought to them for over a decade but just as the New York Times and other major outlets ignored stories about Harvey handed to them on a plate, they have ignored these and other Drug Wrecks – and are increasingly ignoring them. Things are getting worse not better. We are going to have to do it for ourselves.
The RxISK Prize and Map are not just about finding a cure to PFS, PRSD, PSSD and PGAD – recovery in the first sense – they are also about working toward recovery in the second sense.
We will introduce the RxISK Map next week as a next step in this second form of recovery.
Co-operating in the search for a cure can turn Evidence Based Medicine and the regulation of drugs on its head. Rather than let experts and regulators decide when a cure has been found, there are opportunities here for those harmed by a drug – such as those with PSSD – to say that we are the ones who will decide when the remedy works. We will advise other people who are in the same boat as us or may end up in the same boat as us when it would be worthwhile paying money for this treatment.
If we can make this Prize work in the case of PSSD, PFS, PGAD and PRSD we may be able to make it work for other problems across medicine. At the moment we are in the hands of insurers and others to purchase treatments for us and they do deals behind our backs with pharmaceutical companies and politicians and others. We can turn this around and demand transparency so that everybody who takes a treatment will see the evidence base behind what they are being asked to take and the true cost of providing that treatment.
The men and women who had AIDS, the gay and straight folk, those from developed and developing countries found common platforms and won. It’s time to do win again. Medicine doesn’t look like its going to do it for us without some gentle reminders – if you don’t become experts on adverse events you risk going out of business, dude.
We need researchers in pharmacology, medicine, engineering, network analytics and from any other group who think they can help to take note. We need activists and politicians and maybe teenagers, anyone who can make a difference, to engage with this. We need women in particular.
We need financiers, or perhaps people who have studies crypto-currencies, to realize there are values here that can be turned into capital – but not necessarily a monetary capital.
Above all we need a new compassion for those affected – a compassion that listens and helps bind them into a community that can help. And for this we need to call out to the fortunate who have so far been spared and ask them what they would want for their partners or children or grandchildren should some doctor or pharmaceutical company send misfortune their way.
We conventionally talk about the haves and the have-nots. But long before money was invented there were the fortunate and the unfortunate. Its time to reach out a hand. What gets in the way of them recovering is not some evil spirit or sins of their past life but you and me.
Had a very quick and courteous reply from the Womens ‘Institute to say they cannot support the campaign as they don’t have a mandate from all their members. That is disappointing as they are a strong independent minded group of women from all parts and ages in society and are in all sorts of roles as mothers;sisters; grandmothers’ fosterers; and do not all but ,most of the caring work – but at least they did not ignore the message of the campaign, it had been read, did not ridicule or insult as so often happens to people with all sorts of stigma used against them. Paradoxically even when a contact is made and no support is forthcoming – more people have been alerted. So when the time is right and they see something happening they will more likely jump on board even if only to question what is being prescribed – so using a behavioural method called ‘nudging’ I believe, to alter the behaviour of those who produce, buy and prescribe.
Thanks for doing this. The WI response is quite understandable. If everyone agreed there was a problem, it would be easier for WI and Mumsnet to get on board and help collect for an agreed good cause. The problem is that unlike Tardive Dyskinesia where medicine got on board in getting to grips with the problem, in this case medicine hasn’t stepped up to the plate.
The worrying thing is that all the signs are medicine is getting worse when it comes to recognising harms rather than better – watch out for the Vampire posts on dh next week. If this is the case, any of us Wrecked by drugs are going to have to find other ways to draw attention to these problems which are fast becoming the leading cause of death and disability on the planet
Why do you think medicine stepped up to the plate with Tardive Dyskinesia, but haven’t done so with PSSD Dr Healy?
The fact that you think things are getting worse rather than better about awareness of PSSD, has left me feeling a bit worried and depressed.
They cant ignore us forever can they?
My genitals feel especially numb tonight, even as i type this comment they almost ache with numbness. It feels so abnormal.
This sets just the right tone with the laying of hands and the second sense .. stigma and recovery ..
Good Ole Harv has reputedly booked himself in to a Sex Clinic to be cured
There was a bit of press backlash asking why all these women did not come forward at the time, and, men not listening to the women who were telling them about unwanted advances ..
So, it all went round and round, until, #me too.
And why cant there be a documentary on PSSD?
Could Rxisk not make one themselves somehow, if people like panorama aren’t interested.
Surely if there is enough motivation to get a documentary on TV about PSSD, somehow it can be made to happen.
It is well past time this living hell of a condition is given some proper media coverage.
Have you thought of getting in touch with Katinka, Spruce? She was a force behind the last Panorama and can be exceptionally persuasive apparently. She is a film maker as I’m sure you know. Maybe she would be able to point you in the right direction for film making, even if unable to do so herself? I wonder how many sufferers there are who would be prepared to ‘come out’ in public as you are obviously prepared to do? It would take the voices of as many as possible of you, I feel, to really hit the message home. If programmes like Panorama refuse to touch the subject, maybe you could appear on You Tube and advertise the fact widely?
For those of us lucky enough not to suffer – I am the mother of one who has many problems resulting from psych. drug prescriptions – it is very difficult to put your case forward convincingly I find. However, being able to refer others to You Tube would be fantastic.
I do feel that we must actually push the whole RxISK story forward at this point. Many have suffered in different ways – each of those ways worthy of notice. We must all push forward with whatever is our experience – always keeping the PSSD suffering that goes on, in our conversations too, of course. To this end, I am now just beginning to support my son in setting up a withdrawal peer support group. By doing this, I feel it’s another way of pushing the Rxisk message out there. Laurie O. is doing this in America and it’s reading of her push forward that has spurred me on ( together with a nudge from another direction!).
This is grim , the drugging is only getting worse , this is gonna be so tough . Another problem is those drug wrecked usually don’t have the strength to be advocates . They are just hanging on . Disturbing how many families have been destroyed by drug companies and doctors.
The drug wrecked have women in their lives – wives, mothers and daughters. In my experience that’s where the fight comes from.
Yes I agree D. Healy. They will need to be very strong woman as they will be met with a heavy fight and resistance. Changing the culture is gonna take guts, grit and plenty of determination.
I think you are absolutely right Stitch the drug wrecked do not have the energy to do much more than survive -but, the term ‘despairing’ can be used to describe the women that David mentions as well as it referring to the ‘drug wrecked’. We have suffered at the hands of many doctors too – and, in many cases, have been accused of being ‘pampering mums’ amongst other things. Until we reached the Rxisk team, we have not been listened to – our knowledge of the drug wrecked has been totally discounted. Finding someone who listens and believes what we say is the empowering force that keeps us going. Having found this ‘listening ear’, we will now do whatever we can to carry their work forward. Without us, I think it’s true to say, this fight would stand very little chance of success. By our power, the Rxisk team know that there is an energy out here willing and able to support them. By our stance, I hope that we are able to spur the ‘drug wrecked’ to push their efforts with a sense of hope, rather than helplessness, too.
I’m finding what RxRisk and we are doing with the Prize extremely empowering. It’s a way to focus on want we can do and what we can control, rather than drawing our attention 24/7 to our losses.
Hi Mary H.
Me and another PSSD sufferer have thought of getting in touch with Katinka Newman, and we probably will in the near future.
To be honest i am not sure i would be willing to ” come out” in public without giving it a lot of thought first, although i would certainly consider it in some shape or form.
I am only so willing to share intimate details on here about how my PSSD has affected me, because i go by a pseudoname.
Most of my family and friends dont know i have PSSD. Only one close friend, and two family members know i have PSSD.
Opening up about PSSD can put you in a very vulnerable position, and i have had some bad experiences where i have told sexual partners about PSSD, and they haven’t been very sympathetic.
Luckily the two family members and the one close friend have been fairly understanding and believing that the condition exists.
I am still very keen to do all i can to raise awareness in whatever way i can about PSSD. At the moment i am tied up abroad dealing with a house renovation, which is a bit like a full time job at the moment.
On my return to the UK, i am determined to continue trying to raise awareness about PSSD.
Thanks for your explanation Spruce. I’m sorry for jumping to the conclusion that you were totally ‘in the public eye’ over your PSSD. I can fully understand your views and appreciate the difficulties that you face. I just want you to know that all of us here will do whatever we can to support you – please remember to inform us if you decide to use your real name in this fight, otherwise we will assume that ‘Spruce’ has disappeared!
“That’s because — as a result of taking SSRIs — they can’t have sex and I can”
Kevin was so angry that in 2007 he flew to the U.S. to give a talk to health professionals about his experience.
“It’s not something many people, or doctors, will talk about, but sexual dysfunction is a known side-effect of SSRIs while you are taking them.
Symptoms can include erectile dysfunction, inability to orgasm in women and genital numbness.
Around five million people in the UK take SSRIs, and 58 per cent of them could be experiencing these kinds of sexual side-effects, according to one authoritative study, published in the Journal of Clinical Psychiatry in 2001.
Regarded as one of the most thorough studies on the subject, this analysed the incidence of antidepressant-related sexual dysfunction in more than 1,000 outpatients, all of whom had normal sexual function before being treated.”
I am sure Katinka will be sympathetic and its important to have the ball rolling and any contact with Katinka could be extremely fruitful .. a champion for the issues ..
Thanks mary H.
Well in some ways i have already mentioned some personal information on here where people who know me could identify me, so my pseudoname hasn’t granted me complete anonymity.
I sometimes think to myself that maybe i shouldn’t have mentioned about my suicide attempt, and various other personal aspects of PSSD, but i feel it is important to show all aspects of PSSD, even the embarassing ones.
If and when the time is right maybe i will “come out” more about my PSSD. But it is something i am a bit cautious about doing.
RXISK PRIZE; STIGMA AND RECOVERY.
Meeting The Heavy Burden of Stigma Head On.
The series of blogs and posts which have unfolded since the announcement of the RxISK PRIZE have indeed become empowering.
The intertwined, shared burden of stigma and the terrifying fear of retribution causing further abuse are powerful repressive forces which perpetuate the status quo.
So powerful that the courage to speak out publicly and to expose
ABUSE OF POWER demands utmost respect and support.
It is evident that such respect is now being afforded to women who are revealing detail of their suffering, as indeed respect eventually replaced vile and base prejudice afforded to AIDS patients in the first decade of the emerging pandemic.
Surely it is time that such respect for courage, combined with an acceptance of the reality of prescription drug induced morbidity and mortality, must be addressed by prescribers-in-denial.
The haunting experiences of the “relentless pelting of the pitiless storm” of
AIDS – induced infections, cancers, blindness, emaciation, premature ageing and dementia were shared between our visibly dying patients, their loved ones, and their families – (those who did not abandon them under the pressure of stigma and societal rejection).
However, these deeply traumatising experiences were also shared with physicians who attempted to relieve suffering and rejection, and who also joined their much needed advocacy.
Doctors then fought stigma shoulder to shoulder with those infected and affected.
We were initially subject to the same prejudice and vilification as were our patients.
However, the worse we were treated by “professional colleagues”, the more we broadcast, lobbied MPs, spoke to the press, lectured, campaigned, and attended and/or spoke out at their funerals.
It seems that we were empowered by our patients.
We were fortunate to be amongst a group of specialist doctors who were driven by commitment and inspired by patient-power.
Against all odds, stigmatised AIDS patients discovered just how powerful they could become.
In support of those occasional and inspirational psychiatrists who are indeed patient advocates, we surely have the right to demand a wider commitment to courage and self sacrifice within mainstream psychiatry?
To demand humility and to demand recognition of the need to empower their disadvantaged patients and families.
When I observed the misuse of drugs, power and professional status harming patients in the hands of conventional psychiatry, I witnessed the intensity and cumulative “pelting” of another “pitiless storm”.
A storm of ADRs which defied my belief and my understanding.
A storm alien to my medical training and experience.
There was an intense experience of deja vu.
This iatrogenic assault seemed to be comparable with the destruction caused by the AIDS/HIV virus in those times when every infected person suffered so unrelentingly.
So powerful has this “relived experience” become that I have just re-bought Oscar Moore’s brilliant book from 1996, PWA – Person with AIDS – Looking AIDS in The Face.
I now need to re-visit the HIV suffering in order to further conceptualise the suffering imposed by injudicious psychopharmacology.
The similarities of stigma, rejection, loss of hope, scapegoating, patient-blaming and denial are all there.
With AIDS, recovery eventually became possible.
At first spiritually, and then by survival.
Surely it is now time that recovery from, and prevention of psychiatric (and related) drug devastation must be addressed with commitment and openness by those responsible?
Time to demand that attention to outcomes and avoidance of harm takes precedence over the daily demands for more NHS pounds to pay for more and more drugs which have less and less scientific credibility?
Now time to deliver the G.M.C. demanded “Duty Of Candour”.
The potential for the RxISK prize to provide a platform for such reform feels analogous to stitching together all the pieces of the AIDS quilt.
A consolidation which so powerfully symbolised a global, united and successful endeavour.
RXISK Issues $100,000 Prize for the Cure For PSSD!!!!Please donate!
We need to donate to the pool
Lets do this people!
‘Recovery – in the case of mental disorders, which badly affect our identities, recovery in this second sense can be critical’.
The problem is though that the stigma of the label of mental disorder, or even ‘supposed’ mental disorder, once attached, by whoever and for whatever reason, be it honest and justifiable, or malicious in order to exert power and control, that stigmatising label sticks, and conditions the reactions of others. Like a knee jerk reaction.
So, people keep quiet about any mental disorder from which they have recovered, like having a badge of shame to hide, just like the abused ladies around Harvey, because somehow they feel that ‘shame’ will never leave them. They will never quite feel blameless, they will never quite recover. Because they let it happen didn’t they. But the abused of either kind are caught, at the first moment of its occurrence, like shocked rabbits in headlights. They are lulled into it. And then, not wanting to make a scene, they can’t escape. And I guess, so it is with taking medication for the people who don’t really need it, they are lulled into it when vulnerable and then if unlucky, they can become trapped in its abusive effects.
So self belief and self forgiveness is vital for recovery. Be proactive not reactive and move on. The RxISK prize campaign is a perfect way to do this.
Just a thought on raising awareness.
I live in a small city in Somerset in the UK.
If the Rxisk team are prepared to send me out a template letter i am happy to deliver it to every single pharmacy and possibly every single doctors surgery in the small city i live in, on my return to UK.
I can even ask the pharmacists and doctors to email Dr Healy under the objective of trying to find doctors that listen etc.
It might take me a while, but i am prepared to put some time and energy into it in my spare time.
I think your idea is fantastic Spruce – I think we’re about to get a map on Rxisk aren’t we, where we can plot ‘doctors who listen’. I actually feel that a list would also be handy – where doctors can add their own names if none of us have already found and added them. The more we all join the dots together, the sooner we are likely to see the full picture here in my opinion. We need you Spruce, and the other PSSD sufferers, plus all other sufferers, at the head of our march – the rest of us will be right behind you, supporting you in any way that we can.
Punto della situazione su quanti siamo e sull’impatto globale della PSSD, sempre redatto dal Dr David Healy:
In Italia risultano solo 7 reports mandati a rxisk, ma siamo molti di più, esorto chi ha dismesso un SSRIs e continuano per lui le gli effetti collaterali sulla sfera sessuale, ad inviare un report anche a rxisk oltre che all’AIFA.
In USA risultano 121 reports inviati a rxisk, sempre pochi in confronto ai 3.900 casi che si indentificano nella PSSD presenti su ssri sex di yahoo.
Google translate ..
Point of the situation on how many we are and the overall impact of PSSD, always written by Dr David Healy:
In Italy there are only 7 reports sent to Rxisk, but we are many more, I urge those who have released a SSRIs and continue for him the side effects on the sexual sphere, to send a report also to Rxisk as well as to the AIFA.
In the USA are 121 reports sent to Rxisk, always few in comparison to the 3,900 cases that Indentificano in the PSSD present on SSRIs sex of Yahoo.
Carota.enorme noi abbiamo un gruppo Whatsapp da un bel po’ di tempo, ci confrontiamo, ci aggiorniamo, ci sosteniamo. Alcuni del gruppo sono in contatto con medici che hanno riconosciuto la pssd e che stanno facendo delle ricerche, degli studi, c’è anche una raccolta fondi per trovare un’eventuale cura.
Se vuoi unirti sei il benvenuto!
Carrot. Huge we have a group Whatsapp for quite some time, we compare, we update, we support. Some of the group are in contact with doctors who have recognized the PSSD and who are doing research, studies, there is also a fundraiser to find a possible cure.
If you want to join you are welcome!
There’s a programme on Chanel 5 called ‘GP’s behind closed doors’ (kind of off putting title but..) which shows consultations with amongst others, people with mental health problems. The issue of confidentially has been discussed with them ,it seems that a recording of the consultation is seen and agreed beforehand with those who are filmed showing their faces and discussions about the problems. Hopefully nobody has suffered from being on the progrmme , there is always a risk to be weighed up as to whether to take part or do it with faces blanked out.The GP’s are a very skilfull compassionate and respectful group, they don’t pretend to know everything. probably most of us would be pleased to be registered there – yet the last programme showed a young newly pregnant woman with depression being told that Sertraline had a small risk of causing abnormalities in babies. Then being asked on this basis alone , whether she wanted to continue taking it. She. without looking into it any further decided on the spot that she would.it;s not the first reference to Sertraline and that has been the only named anti depressant. IThis level of consent is disgraceful. There were other consultations with Sertraline being prescribed with the very kind GPs but the issue of informed consent was not good. GP organisations such as the BMA and defence organisations and the colleges are not doing GPs any favours by not advising them of their legal obligations to obtain informed consent. .A verbal consent can be disagreed with It should be recorded and even possibly signed as these drugs are so toxic just as any other serious treatment would need – otherwise NO Thanks to Antidepressants without a written information sheet before agreeing to take them and an agreement to follow up with tests -not just compassionate talking (which makes a huge difference but isn’t enough). There presumably is no test to test at what stage a baby may be being harmed in the womb.
PS on a positive note ! in the ‘where to go for advice’ given out after these kind of programmes RxISK is included.
Laurie Oakley’s Blog
Two Sentence Horror Story
“Doctor, how do you know the medication is safe when so much of the science
is ghostwritten?” I asked.
“Don’t be silly!” he said, jabbing the needle deep into my flesh.
RxISK PRIZE CAMPAIGN
You might have started a Dr. Dr. thread (if that’s the right term) Annie!
A few real ones;-
Q ‘Dr what would happen if someone who wasn’t depressed took these anti depressants’?
Q Dr ‘how long does it take for the antidepressants to leave the body?’
A ‘Straight away’.
Q ‘ They make me feel worse can I have counselling or therapy or something else’
A ‘Ha Ha Ha – if you can pay for it.’
Who does an International Expert quote on mortality?
Healy summarised the lines of evidence that demonstrate that the relative risk of suicide on antidepressants is somewhere between two and three times that on sugar pills.9
“When an obviously medication-induced suicide or homicide is reported in the press, it appears that everyone in the community, except lawmakers and prescribers, asks the question, “What was he taking?”. Five minutes of searching on the Internet is recommended to see that this is a massive issue whose articulators and whistle blowers all are cruelly silenced by defamation and by medical regulators and their tribunals. Their courts are based on ecclesiastical courts, which were designed to weed out heretics and not to find the truth.”
Yola Lucire is a forensic and general psychiatrist. She has blown the whistle on the Social Security Conspiracy against the Greeks (1978), the Recovered (False) Memory epidemic of the 1990s, and the epidemic of repetitive strain injury. She has a multidisciplinary PhD on iatrogenic disorders and has published seven papers in the discipline of safety pharmacogenetics in psychiatry.