This post was triggered by the reactions of women to recent posts here and here. It has a partner in Escape from a Prescription Drug Maze. It fits with a relaunch of the RxISK Facebook Page, where the theme of how do we stop ourselves being silenced is one that will be developed.
Tracey whose story featured in What’s a Life Worth didn’t quite say in the post – but has in emails before and since – that one of the critical things is the silencing that happens. You’re allowed a seat at the Table once we’ve removed your voice. We expect you will continue to use feminine wiles – that is operate through men (white).
Ana-Luisa in the third comment on the Morgan vs Morgan post said just the same thing in a striking way.
This is not just an issue for women or people of colour – see the I Can’t Breathe series. Its a problem for white men also – Escape from the Prescription Drug Maze features a comprehensive silencing.
This is a matter of power. The silence stems from the intimidation the powers that be can exert. There are two important sources of intimidation that don’t seem to come straight from the powers-that-be.
Medication Saved My Life
Some people claim “medication saved my life”. This is most striking in the case of the antidepressant group of drugs. Anyone talking about a hazard in any media setting will usually have someone responding medication saved their life or it will turn up in the comments after an article. That is if there is an article – its rarer and rarer to have articles talk about hazards. The media have taken a vow of silence on these issues.
Some people do have the experience that medication has saved their lives. This most probably stems from their experience when they try stopping the drug, feel absolutely terrible and even suicidal, and feel so much better when they restart. The drug does save their life from the dependence the drug has caused.
There are very few, if any, people who go on an antidepressant for the first time and have a life-saving experience. (Some of the older (pre 1987) antidepressants if and only if you had genuine melancholia that otherwise needed ECT might have seemed life-saving. The newer ones – no).
The more usual reaction is discomfort. Half of those starting for the first time give up the drug within a month. And very very few of those prescribed one of the newer antidepressants for the first time have a life-threatening condition to begin with. An increasing number get these drugs for a distressing situation or a negative emotion.
Saying just this risks being silenced with epithets like Pill-Shaming which is now thrown at anyone who might say anything like this.
The vehemence of the reaction seems to betray a niggling sense that some of those on the meds are worried they may have been Conned.
The data about lives saved or not saved is pretty clear.
In 2005 FDA asked companies for all their clinical trial data on these drugs and asked for it in a manner that let companies hide many of the problems. The companies were told not to include any data from the withdrawal periodn- the riskiest period for suicide attempts. The ask let companies like GSK avoid sending problematic trials that were run under GSK auspices but not directly by GSK central as opposed to local.
Despite all these problem minimising escape routes, the cleanest possible data shows more lives lost on antidepressants than saved and more suicide attempts on antidepressants than prevented.
In the face of data like this the Antidepressants Saved My Life trope/claim is tricky. An honest response might be ‘well I think they saved my life but I recognise just as many or more lives may have been lost, which is a problem that needs handling’.
No-one whose life has been destroyed by these drugs has a problem with anyone who claims that their meds saved them. Tracey and Ana Luiza’s problem is the reverse of Pill-Shaming. Its when they mention hazards, they are treated like a threat to society – as blasphemers, slanderers, or treasonous.
The other source of silencing is even more surprising.
The Doctors Dilemma
Maybe it is to be expected that some of the crowd are going to be visceral in their responses to anyone whom they see as threatening the social order – detracting from something they have been told and believe to be in the common good. This is what has always led to a persecution of heretics. There will always be someone in the crowd to start a chant of Crucify Him (or Her in this case).
But we don’t expect doctors to be in that category. Yes they are today’s priests, ministers, imams, rabbis but we expect them to act like good rabbis, imams, ministers etc. With a wisdom shaped by real human suffering.
This is how they see themselves. Most of them endorse the idea that ‘we are better than the average person because we have seen so much suffering’ (not because we have suffered so much).
All too often, however, they turn nasty and violent if faced with someone saying things are going wrong on treatment. Tracey’s experience brings this out – What’s a life Worth.
The experience of people with PSSD brings it out. There is a RxISK article on just how awful the experience can be for people hoping for some help with a devastating condition. This is one of the relatively few times something like this has been published.
The reaction of many people is likely to be – well yes I can understand that in such a strange condition as PSSD. Anyone who reacts like this is wrong. This reaction has nothing to do with PSSD being strange.
It’s more a case of doctors, like priests, don’t really like people all that much. They see what they openly call heart-sink patients come in the door rather than see the free researchers these very same patients would willingly be.
This shows up in public at inquests where, in the interests of saving their own skins, doctors betray patients and families at the hour of greatest need (Escape from a Prescription Drug Maze). And if it shows up there, what do you expect to happen in their offices where no one can see them.
They dismiss the people who come to see them. Have contempt for them. Especially the women. They are a little more nervous about men who raise their voice but probably have less to fear from the bluster of men.
Just like priests abuse you, doctors do too – sexually, homicidally, but primarily by dismissing you. De facto, their role is a religious one but not in the sense that word conjures up. Rabbis, Imams or Ministers from time immemorial have seen the religious task as keeping the herd together rather than cherishing each of us and helping us stand together in the face of earthly power.
Aware of this, nearly a decade ago when RxISK was set up we created RxISK reports. The goal was to level the playing field. Those of you who filled one up would be able to take it to your doctor so that before blowing you off he would know that your problem had been registered somewhere he had no control over.
The hope was we could build RxISK Maps of doctors who did listen and in doing so might slowly change the culture back to something more like what both doctors like to think of themselves and we like to think of them. But this has gotten nowhere. It seems most of you are instinctively too nervous to do this – too aware of a likely hostile response despite telling your friends you have a nice doctor.
If you are up for a challenge – visit How You can Save Healthcare.
In Greek mythology, Medusa was a woman wronged. She was raped. But her story took an unusual twist. She was transformed into a fearsome being whose hair became snakes and whose eyes could turn anyone who approached her into stone. She was shunned and had to live alone with female companions – even her mother sided with the men who were scared of her, and helped in her downfall.
For centuries boys have thrilled to the stories of Theseus who was shown how to kill the Minotaur by a woman and saved by a woman – whom he then deserted. This gets skipped over. And Perseus whose great mission was to kill Medusa. To silence the angry woman. He did this by turning her image back on herself.
The Medusa Story has been one of those myths that has been compellingly reworked.
A Violent Angry Woman
There are a few good people around. A small number in healthcare – but you can probably forget most psychologists who witter on about Complex PTSD but do not know or want to know how to support anyone having an adverse event.
Medicines regulators are not any help, or medical journals, or medical associations, or politicians, or senior people in the legal systems – you can write them off.
There are some good people working in Pharma. Most of what we know about the harms of drugs comes from people working in the industry.
The greatest support is likely to come from women. The mothers of children, who when they aren’t on psychotropics themselves and persuading their children to go on them, are a force to be reckoned with if their children or parents are harmed (partners is a different matter).
A quarter of a century ago, soon after the SSRIs were launched, most of our myths were transformed and compellingly incorporated into Buffy the Vampire Slayer.
Once a week we got to thrill to rather than be scared by the anger of a woman. For a moment it seemed obvious the world would be a better place with a woman capable of acting More or Less Like this –
Or as the answer to What do Women most Desire offered in another old myth put it – depending on the version you read – To control our own lives – To be listened to – To have fun.