Activism on PSSD: ethical dilemmas

[anacleta]

July 20, 2023.

Activism on PSSD: ethical dilemmas.

I have been engaged for a long time in doing what I could for activism, outreach on social media, involvement of journalists, doctors and researchers, and other initiatives over the course of nearly 10 years.

I happened to have a little "strategic" mode, thinking I was acting for good, that is, in order to gain attention and recognition for PSSD. Things like saying only a portion of information, only that which is useful or convenient and prevents the interlocutor from going off course, letting inaccurate details be believed when it's convenient, but also just maintaining common sense, thoughtful and rational tones when appropriate.

For a while, I supported the idea that if post-SSRI sexual dysfunction was already difficult to be recognized by doctors, let alone if a patient reported having anhedonia, emotional numbing and many other post-SSRI symptoms. This would have further reduced the credibility of PSSD as an iatrogenic problem and instead bolstered the denialist physicians who misinterpret it as psychogenic problems. And the first few years I used this kind of symptom exclusion when I obtained the availability of reporters, despite the fact that it was already evident from the words of many that emotional numbing and anhedonia often accompany sexual dysfunction and are quite different from "your depression." Some people had been displeased and offended by this attitude of mine.

It is also harder for researchers to prove that symptoms such as emotional numbing and anhedonia post SSRIs are not a psychiatric problem to be treated in a 'standard' way, and authors in the literature have often kept quiet or put those symptoms on the back burner despite the fact that many patients explained that they were even more horrendous than sexual symptoms.
Over the years, however, more and more it has emerged as it should, and this truth is being highlighted in the media and social media, in the testimonies and (with more caution and restraint) in recent articles on PSSD.
But even in some recent investigations, some authors seem to say: you see, PSSD exists and is not linked to depression, but to do so, they exclude cases with depressive symptoms as if those with PSSD may not feel also depressed.


"What matters here is not what is right but what works"- I happened to hear recently in relation to activism. This phrase destabilized me because it expresses a concept that is already known, but with respect to which I no longer know where to stand now.


This health care system is whirling around spitting us out with the damage it has caused us, if we go back to it for help it hurts us further. Unheard crumbs, while someone with power understands what is going on, but for their own interests chooses to keep us sunk with their big dirty hands. So do we, who certainly don't make it up that we have been harmed, at least want to take everything we can (while it is tremendously little) with good or bad, with the currently unprovable pure truth or with strategies?


I know of some inaccuracies about the recognition of PSSD and its definition, which the authors themselves in literature articles and journalists generated perhaps because they themselves thought it might be correct, or in an attempt to raise the profile of what was the barest of facts, to give it a bump in the road, we deserved it. And so we took that most impactful phrase as a reference, it has a liberating and vindicating sound, the EMA recognized PSSD as a medical condition, do you see it now?
And then it is pointed out to you, that in fact the EMA did not recognise any 'syndrome'. But it was nice to say it and link papers and articles as proof, finally some asshole didn't know how to counter it anymore. With the little we have, should we even take a step backwards? Maybe so, or build a house of cards. All in all, few people will be so bureaucratic and thorough as to find the detail and commit to dismantle the little that has been won that holds the hopes of a group of suffering people. Ordinary people will see an article in Psychology Today, one in the BMJ and they will believe me, they will pass the word...and the dream reality will become.

It is not even known whether a PSSD 'entity' exists biologically. That could be a big illusion. That is, drugs do damage on people, varying in quality and severity. Among millions of people, those who end up with certain sexual symptoms and realize it, get together, compare, start saying: so such drugs do THIS. Even some researchers will be interested in defining the lines of the problem, will help to create an entity, a syndrome with its own name, which, however, will embrace only a portion of the possible symptom spectrum. The portion that is most obvious, credible and easy to present. But at the same time there will be just as many people who are perhaps left with damaged eyesight, screwed-up metabolism post SSRIs, and so on. Scattered damage. After years of "PSSD," among millions who take SRIs there is still a small community in the active. I don't know if it makes sense to think we can track one type of harm or alteration as if "PSSD cases" were an entity. I hope so, that we can identify a core of the problem that is reversible, that the symptoms, even different from person to person, are a cascading effect that starts from a common, identifiable and fixable source. Without unbalancing through an act of trust and hope, nothing will move. Sometimes, imagining something and believing in it will allow that thing to be brought to light.


Why do I feel like noting this and other things? Do I shoot myself in the foot?


One day an imbecile or a smartass depending on your point of view, came on pssdforum and announced that a certain treatment had made him better and suggested that others try it...some time later he admitted that he had never actually tried it but wanted to see if it worked through the experiments of others. Unfortunately, his dream did not become reality. Otherwise, we would have even erected a beautiful statue to him!

There are ways of being dishonest that also hide behind supposedly scientific articles, professional against the tide, PSSD heroes.

- Forcibly finding connections with the hottest topics of the moment to draw attention to the problem.

- Making the theory seem like something exciting, revolutionary, and promising to be explored.

- Sow little illusions here and there, with a few ambiguous phrases that can be variously interpreted but raise hopes, so that it will appeal to at least someone, someone vulnerable to be recruited as a servant to spread the word and accumulate support and participation.

- The direction of the research may have arisen in an almost random or forced way, but the important thing is not that the study is really worthwhile in order to unravel the case, but that the mass of desperate people believe it, eagerly await it with confidence, nurture this in others, and thus increase donations and the name of the researcher.

There are those who work for their own interests that conflict with some of our interests (in the case of PSSD, almost the whole system), and there are those who work for their own interests that coincide with some of our interests (few exceptions we cling to). There can be rot on both sides. When there are people who suffer there are people who take advantage of them. If a specialist against the tide is excluded from the "system," he will have to create a job for himself. It is not patient care that moves him, but a career, built on people's suffering, on their needs, hopes, illusions, money, and the ego boost they give. One must be very careful who one trusts, especially those who are prone to easy feelings of gratitude. The "gurus" are not there to give charity and sincere scratches to you or anyone; you are a pawn for them.

Yet they can be very helpful. You help me, I help you. All well and good as long as you have a clear mind and realize he's half a charlatan, but he's coming in handy and it's best to humor him a little. Less good when you have been deeply manipulated, deluded and deceived and suffer serious consequences. Even less good when you find out that the one who wants to find a cure for the PSSD you suffer from would lure you near a cliff to throw you off it in order to get the cure and the glory.

I came across such an affair juggled by a narcissistic character who has no morality or respect. And probably others among you are aware of other abusive dynamics had with other individuals in the arduous to untangle context of the PSSD activism. Of course, there are degrees and degrees in things. Just being in the world requires some healthy 'strategies', and it is not right to see something rotten behind every strategy just because of an unpleasant experience one has had. I will be more careful, though, to understand who is moving what and why before I play along. I am less willing to turn a blind eye in the name of trust for someone under the guise that they are in favor of the PSSD cause.