I am writing to you after receiving distressing messages from my son, who asked for help with regards to names of specialists or supports to help him with his extreme PSSD condition. This may seem like helicopter parenting, but I feel compelled to write in regards to the devastating impact your message had on him.
He is in utter despair over what has happened. He has been in this state for almost 4 years, but he has been trying to move on. That has been getting harder as he becomes more isolated by this condition, and comes to realize there is no help or support. He is smart and sensitive and has always had a curiosity about and researches everything. Ever since realizing he has PSSD, he has been trying to find a way forward, despite all the information to the contrary out there, and the wall of obfuscation by Big Pharma and the general medical system. He is holding onto life by a string so thin, so frayed, that reading your blunt, harsh, if honest and accurate response has left him with no hope. None. If he cannot have any hope, he is not going to live a full-length life. I am doing everything I can to access supports for him and find a way through this absolute horror. The grief I am experiencing as his mother is immense ~ I do not want to lose my son, and that feels like a very real possibility. It is deeply impacting our whole family.
I would think you would know this is a reality for every person who reaches out to you about PSSD. I am sure you receive letters from many like him, and know they are all extremely fragile, have medical PTSD, but from the tone of your letter you sound uncaring and dispassionate. In your response, I can sense your frustration with the dystopian, Kafkaesque reality we find ourselves in with the powers that be wanting to maintain the status quo and obscene money-generating powers of continuing to sell/prescribe SSRIs without truly informing those taking them of the real, potentially life-long risks of taking them. I understand the huge toll it must take on you to constantly be under fire for spreading misinformation and disinformation about this real condition (and others caused by prescription meds), to have others trying to discredit you, but you have a duty as a doctor and as a human, to first do no harm. You cannot be an advocate and supporter of this cause if you are going to respond without empathy and care, and in so doing destroy any hope that anyone dealing with this condition has. My son is contemplating applying to MAID. He does not want to die, he wants to live, but living in the physical, emotional and spiritual pain of this condition he is in is not livable for him for the long term. I am doing everything I can to keep him with us long enough that we just might find a way out of this for him and others. I think you have a responsibility to do the same, while still being honest about the current reality.
I hope this resonates and that you can find a way to answer these messages you receive with care and empathy while still remaining honest about the reality right now. Don’t assume the person you are writing has the personal resources to go about “marketing” and spreading the word about this reality if they are just holding onto staying alive. Be gentle with them. Show your care. This is as important as being honest.
Experts on Experts
The email above has had some words trimmed but no points removed. It came just after an email from this lady’s son, X, which came just after the Treatment Complications Good Expert Needed. There is no reason to believe X had seen the post. His ask was for me to point him toward some area in which he could make a difference.
The complained about response in full was:
Empathy – Sympathy
Before jumping to conclusions here – there really shouldn’t be any conclusions – no-one knows what situation this woman or her son are in. It is easy to take sides, easy to know what you would do – if you don’t have the details. Beyond the original very brief email, and his mother’s follow up email, I don’t have the details.
I have had contact from many mothers in this position. One immediately comes to mind, whose son did take his own life. There was another mother, whose son I went out of my way to help by putting him in touch with experts in his area, who were as well placed as anyone in the world to help him in his mission which was not just to help himself but to help everyone suffering with PSSD. Despite this, he committed suicide.
Empathy and sympathy are not the same thing. Sympathy involves a general expression of sorrow or support – oh it must be tough – or – I wish there was something I could do. Empathy means actually spotting the position the person is in and responding to that rather than voicing what are often platitudes.
Another distinction is between hope and optimism. Optimism tells someone – yes sure, things will work out. Hope builds on an achievement the person has made – if there has been no achievement, however minor, there is no hope.
The achievement doesn’t have to be mind-bogglingly complex – it can involve humor. A while back Simon Wright wrote to the President of the Royal College of Psychiatrists in Britain telling her he had PSSD and was contemplating euthanasia. She responded – that sexual difficulties on SSRIs are mild and transient and she is sure that an appointment with a psychiatrist would put him right.
The humor here is black but this magnificently demonstrates how shallow the system is. There are lots of things like this that can be done – tempting those who should be on our side but aren’t out onto thin ice.
Almost self-evidently, the people who going to be by far the easiest for me to respond to are those who tell me something rather than ask me. Anne-Marie who featured in last weeks Medical Triumph post – Roy and Bryn and Simon who feature in Has HealthCare Gone Mad.
It is easy to respond to Daniel and others with PSSD who are actively researching angles on their problems and make me aware of great leads I knew nothing about. Or to Simon who has brought a new marketing dimension to what might be done. Or the many people like Amit who outlined his experience with Visual Snow and the many others who have drawn to my and everyone else’s attention problems that are happening that few of us knew anything about before it was put on our radar.
RxISK is mainly about people like this who tell me everything I now know, some of whom write not just reports on their own experience but posts that might look like they are written by me.
Asking me to solve problems that no one knows the answer to is not going to work out. Asking me to direct the course of someone’s life when I don’t know what their skill-set is and even if I did they should not be directed by me, won’t work out either. Asking me as three people today have done to help them taper off meds, when it seems to me they haven’t clearly checked in on whether I figure tapering is likely to work, is not a recipe for things working out.
(Several posts have outlined by doubts the mantra that there is no problem getting off these drugs if you only taper – a mantra pharmaceutical companies and the psychiatric establishment now find it convenient to quote back at people having real difficulites).
The problem with RxISK not solving people’s problems for them – with it being instead a place where you make contributions to solving our common problems – with me not doing what people tell me to do (which is what these ‘asks’ often amount to) is that there are now tons of people who bad mouth RxISK. Even from PSSD network.
Fortunately, I had another email that almost coincided with the top email above.
Regarding some of the issues you raised in today’s blog, you offer something that most other doctors don’t even though it’s not an active intervention: you know more than the average doctor about what not to do and what might do more harm. And when to take a patient’s concerns seriously. After 10 years of searching, I found a psychiatrist this month who has curiosity and willingness to engage in discussing the antidepressant injury. I am going to have to teach him many things. But I can already see that he still has the potential to harm because he could convince me he understands something that he actually does not have accurate information on.
Lastly, one of the insidious things about having an antidepressant injury is some of the less torturous effects are harder to link to the SSRI but after reading your posts I can now trace back the development of many eye issues that I had not previously attributed to the antidepressant (but now I am very convinced that it is linked). These things I described above are things that you offer (from my perspective) so maybe that is why myself and many others keep approaching you. However, I realize. you cannot be everyone’s doctor. I am grateful for all the ways RxISK.org has helped me.
(I need to add that the visual post was not my work – it was folk like this emailer who has herself drawn my and all RxISK readers’ attention to problems few of us knew anything about like interstitial cystitis – See Girl on a Hot Tin Roof. Interstitial cystitis does not immediately look like it has anything to do with sex or PSSD but both this and the visual snow post have been hugely fruitful for the way I, at least, think about these things).
We are up against things that no-one has answers for. In situations like this it’s tempting to look around for a savior. When it comes to drugs and their injuries, many look around for a father figure, often medicines regulators like FDA, figuring they are there to keep us safe. They aren’t. Putting it politely, FDA are mindless bureaucrats.
Looking for guidance is a mugs game if no-one has the answers to the issues we are looking for guidance on. The Freudians called this reflex – delegating narcissism. Its tempting – the trouble is, as Oscar Wilde said, I can resist everything except temptation.
A hope built on achievement, rather than optimism, is critical but even this should not be allowed to blind us to an appreciation of the difficulties we face that if they are to be solved will only come about by teamwork – true teamwork that is, rather than being part of collective directed by a savior.