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Going Public In Videos about PSSD

Unread postPosted: Tue May 01, 2018 11:42 am
by Kevin2017
I am writing this message because people are being requested to provide a video testimony about their PSSD. I have had PSSD for 22 years and been involved in genuine PSSD activism for many years. I have spoken publicly about it in the UK and abroad, been interviewed by many journalists, writers and reporters, my case study has been published and referred to within scientific journals and I have been acknowledged by one of the key authors of the academic literature for my contribution to her work. I was also nominated by Rxisk for the Radio 4 All In The Mind Award for my activism within PSSD. My advice is the following;

If you want to make a video testimony of your PSSD do it yourself and copyright it. This is not a complicated process and can be done online for free. This will enable you to post it online yourself and give anyone else who is acting in good faith the opportunity to use your video with your permission. You can prevent your video from being used for a destructive or illegitimate purpose and prevent it from being edited or used in a context which will not benefit the viewers` understanding of PSSD.

I also advise against making a video in which your appearance will be distorted to disguise your identity. While it is perfectly understandable for you to wish to preserve your privacy this will come at a huge cost to the credibility of your story in the perception of viewers who are unaffected by, or unaware of PSSD. People communicate primarily on a visual level and visually you will be conveying the message that you are someone with “something to hide”. However reasonable your verbal message may be it will be far less convincing. If we are claiming that our sexual dysfunction is caused by the drugs and not mental illness we should demonstrate that we have the mental fortitude to speak about the condition without protecting ourselves from being identified. Of course not everyone will feel able to do this and that is fine as there are other methods of activism for them to be involved in without making a video testimony.

If you have taken any other psychiatric drug in addition to the one which you attribute to the cause of your PSSD or if you are still receiving psychiatric treatment it would be better for you not to offer your testimony regarding PSSD as you will simply be doing the pharmaceutical companies` job for them. Whether you have PSSD or not you will not have a plausible explanation for your PSSD in the view of the general public who lack understanding of the condition and by you coming forward to offer your testimony it highlights the lack of other people coming forward who can reliably attribute the cause of their sexual dysfunction to one drug. If you have ever been subjected to a cocktail of psychiatric drugs and treatments this is very unfortunate but you are completely unsuited to represent PSSD.

Lastly, be very careful who you associate with and who you trust to share your story. If you get involved with anyone who expresses fringe or extreme views you will only harm understanding and awareness of PSSD. Many people have hidden agendas and don’t reveal their true intentions until you have already given them your story to do with it as they decide. Rather than taking people on face value it is better where you can, to independently verify the credentials and background of the person who you will be placing your trust in with your testimony.

Re: Going Public In Videos about PSSD

Unread postPosted: Tue May 01, 2018 3:33 pm
by Juvo
Hi Kevin. First off, we appreciate your activism and work towards educated and increasing awareness. It's truly courageous and invaluable for our community.

I have a few questions, I just want to make sure I'm understanding your post entirely. Are you saying each one of us should make this video or suggesting it's the best medium of provoking awareness?

Would you be willing to comment more on when you first decided to take a public stance on pssd, or was it always something you planned on doing?

Also, and I'm probably not the only one here thinking this, but has your condition basically stayed static throughout the years or has there been changes, good or bad?

Thanks again

Re: Going Public In Videos about PSSD

Unread postPosted: Wed May 02, 2018 2:42 am
by Kevin2017

I posted my message because I was asked yesterday to take part in a documentary which I believe is very likely to undermine the credibility of PSSD and risks undoing much difficult work in spreading understanding and awareness of PSSD. I certainly would not recommend that everyone makes a video for the reasons explained in my original message;

If you have been on more than one psychiatric drug prior to your complaint of PSSD or if you are going to have your image distorted to conceal your identity it is better that you do not have your story filmed.

If you have taken a cocktail of psychiatric drugs or are still undergoing psychiatric treatment, however admirable your intentions may or may not be in bringing your story into the public arena, all you are doing is damaging the credibility of PSSD and hindering a solution. In addition anyone publicly associating with such an activist is adding to the harm they are causing to PSSD awareness.

This is my view based on years of counter-argument from people, patient groups, mental health organisations, regulators and professionals discussing PSSD as well as many interviews.

However if you are going to have your PSSD testimony filmed and made publicly available, as a precaution, it is better that you film it and copyright it yourself, so that you decide how it will be used. There is also a limit to what video testimonies will achieve and they shouldn’t be regarded as a silver bullet.

Don’t be taken in by anyone merely because they portray themselves publicly as someone who feels passionate about PSSD and the injustice done to those afflicted. Angry videos do not resonate with the viewing public. You can express your anger as much as you like within private conversations with those who understand PSSD but doing it in youtube videos will simply portray you as someone of questionable mental health who has personal issues that can’t reliably be blamed on any drug.

It is all too easy for someone to begin posting videos online and to self-identify as a patient advocate with PSSD. Do not take anyone at face-value when they make such claims about themselves even when they are trying to associate themselves with other legitimate activists or organisations. For example, everything I have said about myself is verifiable but others may try to associate themselves with a trusted professional or organisation to benefit from their reputation, even if they do it by a method as simple as nominally fund-raising on their behalf.

It is better for the efforts of PSSD activists to be co-ordinated through a bona fide organisation. If you want to be involved in productive activism I would subscribe to and only get involved in activities which Rxisk endorse.

I have always been prepared to speak publicly about PSSD because we would all have wanted someone to have warned us and that is why when asked, I have done so.

My PSSD has remained the same throughout.

Re: Going Public In Videos about PSSD

Unread postPosted: Wed May 02, 2018 2:58 am
by been_too_long
Could you link to all the interviews, case study, and sources of your activism? Since you've been doing all that for years and PSSD is still pretty much unheard of... it must of gotten buried somewhere.

Re: Going Public In Videos about PSSD

Unread postPosted: Wed May 02, 2018 10:52 am
by fema4psyciatrists
I'm just doing my best to do something about the situation. I don't wish to do any of any interviews I have done, or make websites or run a marathon or revealing my face and identity all that I have done. Probably a lot of people I know on facebook have actually seen my PSSD identity which is utterly humiliating but my other choice is to do nothing.

I am lucky my friend is at university studying filming and is interested and wants to do a PSSD documentary. All his class and teacher were also interested and had never heard of it. You can never please all mental health professionals, (a psychologist in the street for the documentary was interested).

I ask you because I think it would make a more compelling case for PSSD awareness but of course It is only up to you if you want in or not. I want to be effective and nobody is going to make a PSSD documentary for us. Maybe someone will if this one is decent.