This 2020 closes in the middle of Covid19 and with the package leaflets of SSRI and SNRI antidepressants just updated in Europe with a new but evasive Warning:
‘Cases have been observed where symptoms of sexual dysfunction have persisted after discontinuation of treatment‘.
Doctors, did you notice?
Here I am. My sexual symptoms caused by an antidepressant have indeed persisted. They have persisted for 7 years without improvement.
I would like most doctors to know about PSSD, Post-SSRI Sexual Dysfunction.
We who already suffer from it cannot expect ready-made help from you, that’s true: there is currently no cure.
However, it would be fortunate for those who will come to see you next year if you were one of those doctors who were up to date. Who knew the literature warning of these possible consequences So you could assess together with us who come to you whether we should expose ourselves to these risks.
Many young people with severe post-SSRI syndromes, with persistent symptoms of both sexual dysfunction and emotional numbness, kick themselves and would cut off an arm to be able to go back and not take their prescribed medication for situations that might have been otherwise addressable.
They would like to have themselves back. Too late.
I have known the double face of antidepressants. An SSRI helped me to suffer less. At the price of tearing away from me, perhaps forever, one of the things that was most precious and meaningful to me. Something that had grown with me. Something I dreamed would bring me into intimate contact with other people. My sexuality was silenced when I was 25.
I had a past of much suffering but I would never have imagined that I could encounter such a traumatic and painful condition. Sometimes “it never rains but it pours”.
Some of you say you have never heard of PSSD. Some listen to us complain about it but even after reading about it in the literature continue to deny it. Some of you are arrogant. Some brush us off hastily, sending us home with a new prescription or referring us to psychotherapy because “it’s all in your mind”.
Some of you intervene when we talk about the serious risks of the drugs you prescribe, defending them because they are ‘life-saving’ for many people.
We are looking for common ground.
We are talking about people who are suffering because they find themselves having to bear a very harsh condition induced by a drug that was intended to be helpful. A condition without cure, and will remain so while you deny it and deny us.
Bad as the condition is, it can always be made worse by inadequate and arrogant responses from disgruntled doctors.
I know that many of these situations can be complicated to understand, but you need to have an open heart, brain and ears to be able to discern.
If psychotropic drugs, such as SSRI and SNRI antidepressants, can save the lives of some people and help others, they can also ruin the lives of others in a very serious and irreparable way.
If my judgement afterwards is that it was a risk worth taking or if I rather than you pushed for it, then its on my head. If this is not what happened between us, then that is something else.
I say to you. Do you really want to turn a blind eye. Do you really want to sweep under the carpet the cases where these drugs have ruined people, because they are inconvenient? Have you not noticed you are quietly doing it?
Do you really want to silence us?
We are your patients too. Who if not us will make our voices heard? Do you want us dropped into oblivion, along with our uncomfortable and sad truth?
When you claim that antidepressants are life-saving, who are you really protecting? Us or you?
I believe these drugs help people. I hear that from them. But others are being harmed. Sometimes irreparably, as in PSSD.
All of this happens in an unpredictable way. But knowing how serious this condition can be, I think that if you/we were concerned for people’s well-being, there would be many prescriptions where the risk would make the attempt at treatment unjustified.
There may not be a miracle cure with no side effects. But these drugs could be used more safely if more research were done to understand the cause of PSSD. Perhaps the risk could be avoided. In this sense, research into PSSD is not only of interest to those who already have it and just want to get a cure, but to all people who may at some point in their lives get a prescription for SSRIs or SNRIs and expect to get benefits from them. And it is in your interest who prescribe them.
There could be more preparation and more transparency, honesty, listening and attention from you. Even for the boring amongst us for whom the treatment went wrong.
I hope for 2021 that your conscience comes alive, that you recognise that in some cases what you have done (with good intentions, or in the haste to follow a procedure) may have given a very dramatic present to some people.
I hope that you can have compassion for those of us who are now suffering more than we were before and that you can humanely stand by our side too. We are patients not consumers.
I am your patient too.
This post is by a woman who liaises with RxISK and has done a lot to make a difference.