Editorial Note: The image goes with a study headlined Doctors stop listening to patients several seconds into a conversation. This post is from one of the many PSSD sufferers who behind the scenes has been helping push research on this awful condition forward. It would be a lot easier if doctors did listen.
Just as the brain and the human nervous system are largely mysterious fields with much still to be discovered for today’s science, the way SSRI / SNRI molecules help depression has not yet been well understood and some researchers believe that the “serotonin theory” on these drugs is wrong.
Patients’ experiences show that for some these drugs work, for others they work a little, and for others they don’t work. It’s trial and error to find if there is one that is “suitable” for improving your mood.
The possible side effects are very subjective. And almost every side effect can be questioned, misinterpreted, or passed off by a psychiatrist as a symptom of psychiatric illness, even where the onset of the symptom was in the direct experience of the patient clearly linked to taking the drug.
The psychiatric patient is easily treated as a person whose word and ideas are not reliable. So if the patient reports the onset of a side effect caused by the psychiatric drug, the psychiatrist often first likes to question whether it is a side effect – it could also be a symptom of the disease.
A Perfect Crime
If this happens with side effects common and present in the leaflets, consider what happens in the cases in which the person claims the harmful consequences of taking a drug persist after its suspension.
Withdrawal syndromes and post-SSRI syndromes are still poorly documented in the literature, not present on the illustrative leaflets and most psychiatrists ignore them, and instead consider the patient who worries they have been “ruined” as unreasonable, and needing to be put back on psychotropic drugs as soon as possible.
We enter the field, we could say, of a “perfect crime”.
The drug has damaged you in a way that is evident only to you who live it on your skin, and not because you are an imaginary madman, but because there are not, to date, diagnostic tools capable of highlighting the damage that you are suffering.
Where is the problem, when someone who has previously taken an antidepressant finds himself, practically, chemically castrated, with genital anesthesia, erectile dysfunction and anorgasmia or orgasm without pleasure, never experienced before?
The clinical experiences of these patients, the rotation through manymedical offices have shown that the common tests and instruments fail to highlight the condition and the etiology of the symptoms. Therefore, there is currently no diagnosis of post-SSRI sexual dysfunction.
And if you listen to the doctors, the psychiatrist will tell you that these are psychic symptoms and that you are being treated with psychiatric drugs … maybe even the same ones that caused the problem.
Many psychiatrists are convinced – or prefer to believe – that the iatrogenic damages caused by their (adored) prescriptions do not exist.
Yes, perhaps far away, some rare case of tardive dyskinesia with some antipsychotic … But if you, mentally ill, stop taking an SSRI and now come to complain because you no longer have a whiff of an erection despite wishing to fuck like before, I can only tell you that you have a bit of a problem with anxiety, depression and psychosomatisation to be cured by summarizing the drug.
There’s no point explaining that before the drug you had never experienced not a whiff of such dysfunctions!
Do you know, dear psychiatric patient, that low libido is a very common symptom of depression?
Do you know that premature ejaculation and erectile dysfunction are common symptoms caused by anxiety?
Do you know that the more you think about it and focus on the problem and the less chance you have of recovering?
Do you know that hypochondria…? Do you know that psychosomatization…? Do you know that on the internet you find everything and more?
It doesn’t matter: it’s in one ear and out the other, explaining that “before the drug”.
Your word is not reliable, my impotent patient dear; or deep down, maybe… it is too easy and convenient denying that you may have been ruined by my prescription.
You stretch out some papers with medical literature studies you found on the internet and beg me to read them, I reject them telling you they are just “anecdotal cases”. Are you trying to question my skills?
Look at you… you keep trying to “make me understand”! What do you want me to say to you? That yes, maybe you’re out of luck? Did I give you a poison that ruined you forever? And that now I don’t have a shred of solution to offer you to repair this damage? It wouldn’t solve your problem and above all I would admit my guilt for not having informed you of the risks, I’m not that stupid. In these cases, better to beat around the bush, confuse the truth, keep Pandora’s box closed.
You had blood tests and the hormones are in place; I am a psychiatrist and I tell you that genital anesthesia (here, however, a grin escapes me) is in your brain! and this is why I can help you (I feel puffed up) because I am a doctor who understands it, and based on your symptoms I prescribe you an adequate psychopharmaceutical (and here I rub my hands), then see how it goes.
Yes, see how it goes. Because risking being permanently damaged is included in a harmless and shallow “see how it goes”! In case of undesired effects, you can always stop it; so there is no risk of finding yourself spoiled by just a few doses.
And if it ever existed, it would be something so invisible and secret that I would be safe anyway. Because even if you were ruined you will have no way to prove it; no one will recognize it, I will not recognize it, I will not believe it possible or I will prefer not to believe it, or, maybe secretly I will believe it … but I won’t feel guilty! I followed the label and the indications of the pharmaceutical company, I did my job well, full stop.
How unfortunate are the lives of these psychiatric poor guys… But the last thing we need is to be conscientious and feel guilty, in that case I would be the one who needs to be treated!
Just PSSD?
A number of studies and articles have come to hand recently on the more general issue of doctors listening. One features on the Mad in America website this week – How patients solicit medication changes, which has an accompanying article.
This doesn’t paint doctors in such a bad light – perhaps because it had to get published.
There is a wider literature dating back 20 years from the Institute of Medicine and others saying that doctors just don’t listen – about any side effects. So its not just a RxISK discovery. One of the best articles on this is called The Silence.
Spruce says
Its not just doctors who are unaware of PSSD, that wont listen or help.
I have met one GP who knew about PSSD, was an ex psychiatrist, had past patients with the condition, and actually believed me.
He did almost everything in his power to avoid helping me, including refusing to speak to my then psychiatrist or Dr Healy about my persisting sexual problems caused by Citalopram.
He would do almost anything he could to avoid talking about PSSD. He would try to change the conversation, remind me my 10 minutes was almost up, and refused to read some information on PSSD from the MHRA that I brought to one of my appointments.
Even if you find the needle in the haystack (A doctor who is aware of PSSD), good luck getting any help or support.
Krista Hartmann says
I have been guided thru withdrawal of over a decade of psychotropics by a CMO of a large BH corporation. It took over 2 years. My mental illness diagnosis was discarded after a bitter, ugly fight, resulting in a bitter, costly victory.
Months after stopping the drugs, I had a partial seizure, thinking it was a stroke. The ER thought so too, but couldn’t quite put their finger on it. Mentioning damages from the past anti-psychotics, et al, resulted in troubled, fleeting looks & a general discomfort with the conversation. The End.
The next year I had 3 seizures. My GP suggested I ‘see someone’ (a therapist!) before sending me to a cardioligist to check blood flow, etc.
The 3rd year after stopping the drugs, I had 9 seizures by June. The neurologist glanced at the Andreason report I dragged everywhere (pre-frontal lobe shrinkage from just WEEKS of anti-psychotics, “just consider it, please”), ordered basic, preliminary scans & lost interest when they showed nothing. Saying “I don’t know but we need to find out” was beyond his ken.
I had to force his office AND my GP to get me into the Barrow Institute for further study, a tough appointment to get.
THEY said THEY knew straight away, then were confused, then scratched their head, in spite of the info I brought regarding the subject of long-term damages, new science but showing clear ‘markers’.
Nobody was willing to ‘take on’ this new, rapidly emerging field, despite the scowls & wincing when I relayed my unfortunate history of an indiscriminate deluge of psych drugs for 11 years.
An ear specialist applied Epley maneuvers, after that had been tried & discarded the first year. It has kept most ‘activity’ at bay, despite Barrow’s absolute repudiation of BPV…I didn’t fit the symptom profile. But feel free to come back if they don’t stop……. What for?
I don’t care what helps. My last seizure was 15 hours long.
Ironically, NOW the medical pro’s WON’T designate these ‘events’ as SYMPTOMS as they did for every other misery caused by the drugs, in real time, for over a decade.
Having it ALL WAYS, ALL THE TIME is their M.O. The fight will never be over.
susanne says
In the next few years there’s moves to digitalise every one’s medical notes and to give all citizens access to their all own records (i have lost the ref but i seem to remember that was retrospective as well).
Thing is people are still not using their rights to have copies of their notes. There is some right to add comments but not to alter notes. When a healthworker sits there making insulting remarks, using offensive behaviour eg posturing, face pulling – this won’t be possible to comment on – but the information recorded as ‘factual’on notes can be.
As coding is used more it will become harder to challenge what has been documented . At times it is difficult to admit that the medic we assume at first can be trusted is actually undermining and at times ridiculing us.
The ‘threat’ of access to these digitalised records is making some GPs worried about the the sort of personal comments they have put on notes -we should make them more worried by excercising our rights to our own health records.
These are the records which the government proposes should be given to department of work and pensions when people claim ‘benefits’- with ‘informed consent’. How easily individuals will be frightened into giving access is predictable when their income is at stake. There is a pilot running already.
tim says
Neurosurgeon Henry Marsh observes in his book, “Do No Harm”:
“Doctors need to be held accountable since power corrupts.
There must be complaints procedures and litigation, commissions of enquiry, punishment and compensation”.
“At the same time, if you do not hide or deny any mistakes when things go wrong, and if your patients and their families know that you are distressed by whatever happened, you may, if you are lucky, receive the precious gift of forgiveness”.
During my half a century of studying and practicing medicine, things inevitably went wrong on occasion.
It was professionally compelling to listen, acknowledge, investigate, and where things may not have turned out as physician, patient and family had hoped, why not acknowledge, share distress, and apologise?
This is our Duty of Candour.
I see little evidence that those prescribing psychotropic drugs causing such devastating harms as: PSSD, AKATHISIA, and/or ADRs misdiagnosed and forcibly treated as “Severe Mental Illnesses” – are willing to accept, and to deliver their Duty of Candour.
It has to be acknowledged that, on occasion, allegations of adverse outcomes are NOT justified.
Where they are so clearly valid and justified, the Duty of Candour MUST be both accepted, and delivered. This Duty commences with listening to our patients.
When are we going to hear psychiatry acknowledge that people with unrecognised severe psychotropic adverse drug reactions, (and no mental illness), are detained, deprived of all human rights, and terribly injured by enforced “medication” with the same drugs that caused the original injury and misdiagnosis?
Drug-dependent psychiatry means ” Never Having To Say You’re Sorry”.
susanne says
Johanna – on Sept 11th 2018 you wrote an article in the form of a letter to Pamela Whibble. The arguments and the comments to it could equally be applied to this latest addition to the campaign for more funds to support doctors with mental health problems – and crucially once again to attempt to blame ‘patients’ complaints to the GMC as a major cause of suicide amongs GPs.
In the Guardian 24th Feb 2019 ‘I Went on a Walk and Returned to Find My Husband Dead’,there was an account by a his wife also a GP which laid much of the blame for a GPs suicide on a complaint to the GMC some years before. Maybe it slipped out but the article also admitted that the the GP had suffered recurrent bouts of depression , had waited a long time for anti depressants to work, and in fact importantly they ‘may have made things worse’.
In Pulse med mag 19th March – the same GPs suicide written up as – ‘The Heartbreaking Tale of Richie Demands Change on GP Suicide’. with emphasis again on blaming complaints as a cause. Of course it is heartbreaking but it is also negligent not to investigate the role medications had in his death. Seems they hadn’t stopped recurrent bouts of depression but then the last prescription had possibly ‘made things worse’.
Heather R says
A Perfect Crime indeed. The worst crime possible, causing the victim to doubt themselves or lose hope, knowing that he/she who prescribed the poison, is now distanced comfortably from the hell they have unleashed. What can be more terrifying than to know your own body, know what it is manifesting, but be told you don’t, by the very person who used to merit so much trust. Brilliantly written post. Thank you.
mary H says
It is my firm belief that if we – whether we be in the medical field, care services,education or any other area where others rely on our integrity – live our lives as openly honest as those relying on us have the right to expect, then, if complaints come our way, we will find the strength to either apologise for our mistake ( for we are mere humans too) or to fight tooth and nail to clear our name if wrongly accused. Problems arise when we bow to pressure (usually from bosses or external sources) to behave in ways which are below our own usual standards – either by bullying, poor record keeping or actually recording or perpetuating lies. Prospects of increased wealth or status are usually behind such behaviours; striving for such can put us under severe pressure resulting in poor health. There are, of course, exceptions to this rule – doctors, just like the rest of us, may become mentally unstable without being guilty of any wrongdoing in the same way as any one of us can become mentally unwell without a hint of complications in our lives – those are the more unusual cases and are the ones worthy of our sympathy – the others are not.
Carla says
Manifesto of creating a disease (s), whilst the poor patient, in a vulnerable and helpless state, portrays those, under their care, as ‘god like figures!’ ~ This is the worst crime that anyone can be involved in. It is too late for some to wake up, before they realize that they are becoming a shell of themselves, in the hands of those that have blood on their hands. This is why some Docs are notorious for being legal certified murderers.
They play with their toys.
Break them.
Then discard them.
Can you please tell me of any Doc, who comes clean?
Some bury their mistakes by creating more problems.
Are some deluding themselves: ‘Upholding life or their own self -worth?’
Are the pretending to play God?
Hippocratic Oath ~ DO NO HARM!
This is an Oath, that has been broken many times over.
Since, when did someone’s life become nothing in the hands of those who don’t care?
Carla says
Hi Tim,
I admire your honesty and finding doctors like you is like finding a pin in the haystack.
All doctors, need to be realistic and set expectations before any complications occur.
Whether, it is surgery or dispensing medicines, one needs to weigh up the pros/cons and needs to determine if it is worth the risks.
A doctor needs to have a risk assessment and it should be thoroughly planned out before they embark on a goal. The doctor needs to be humble/compassionate and set reasonable expectations.
We all make mistakes however, one should try to avoid them and not try to bury them by neglecting/abandoning a patient, in times of need. This is not what I call ‘duty of care’ and it is the worst form of neglect that should never be condoned.
I have NO DOUBT, whatsoever, in my mind, that there are many fine doctors out there, who work in the best interests of the patients.
Sadly, I have not come across this for a while.
Medicines, in the wrong hands, (very powerful choice of words, I am using), are being used like weapons of mass destruction.
This abuse of power, is not only dangerous but deadly.
No one should have to suffer unnecessarily.
If we repeatedly make the same mistakes, we are not learning.