And I was like, Well, I've been chemically castrated and lobotomized, so of course I'm unhappy. If you take those problems away, I've got nothing to be unhappy. I've got a good life. Hello and welcome to Awake at the Wheel. In today's episode, we're going to be discussing the topic of PSSD, and that stands for Post-SSRI Sexual Dysfunction. So SSRIs are medications that are typically prescribed for depression, for anxiety, and for other related disorders. And off the bat, I want to clarify the difference between our scope of practice as psychotherapist and psychologist, in Ontario, versus psychiatrists So while we are not prescribing such medications, we do work with numerous clients who are utilizing these in conjunction with therapy. So this post SSRI sexual dysfunction is something that both Oren and I have encountered in our practices. Generally speaking, SSRI as prescribed again for mood disorders and common side effects that patients clients are aware of include things such as gastrointestinal issues, sleep disturbance, changes in appetite, and sometimes sexual dysfunction is disclosed. But the gravity of such sexual dysfunction is rarely discussed. So as such, today we have two guests on the show. And this is Ruben DeWitte, who is the founder of PSSD Network, as well as Simon Wright, who is the head of PSSD Network UK. So thanks so much for being on today, guys. Thanks for the opportunity. Glad to be here. So right off the bat, I'm wondering if the two of you can tell our listeners a little bit about your background and what inspired you to start the PSSD Network. Sure. I guess I'll start. So I myself am a software engineer in Frankfurt, Germany, and one of my loved ones is suffering from PSSD, So I'm not a patient myself. And I saw that there was kind of a lack of a global organization or global kind of awareness efforts in regards to PSSD. And I basically I think 2022 decided to make a website, get people together, you know, like minded people that really want to drive change and raise awareness for PSSD And yeah, it's good to get the word out there. And with the end goal of eventually funding research on finding some kind of cure or treatment for this condition. Maybe Simon can pick up from that. Yeah. So I’m Simon I look after the PSSD Network UK. I'm from the UK, obviously, and I've had I've been on SSRIs since I was since like 2012 when I was 22, and I've had symptoms of it since then. But I didn't learn about this study until an article in the Daily Mail in the UK that PSSD Network guys sort of made happen and that was December last year. So I've been living with this condition for over a decade. Not only that and found out I've got this condition. So since then my background was in marketing, so I've always had that kind of stance on things, how to drive awareness about the condition. And I realized that the condition has been known for quite a long time. Like since 2006 was the first study and the first reports to the regulators like 1987. So for me, I just felt I felt quite a lot of anger. Like finding out that it's been known for such a long time, way before I was first prescribed. So that's what kind of fired me up to sort of get involved with PSSD Network. And now I look after the sort of UK side of things in terms of driving awareness to the UK media and also can be relevant and a couple of other guys in the charity. I'm just doing other things like patient videos and am working on trying to raise funds for research and that type of stuff. So Simon, you mentioned that you weren't aware or at least it sounds like you weren't aware of, you know, these sexual side effects when you went on the SSRI. Is this something that you hear from a lot of patients who join your network? Yeah, I mean, I mean, me personally, when I was first prescribed them, I wasn't told of any side effects. And on the packaging, it just said don't operate heavy machinery. And I have very similar feedback from other people. I mean, we've got some sufferers who were prescribed SSRI drugs for IBS and premenstrual syndrome PMS. So somatic problems not even to do with something that's perceived to be in the mind. So yeah, there's just a wide variety of issues. I mean, there's one lady in Finland who used to do a video, public video. Rekha, and she was prescribed them for bladder pain. And so it's just been handed out so easily with so little informed consent about the risks. So, yeah, there's a wide variety of different patients with different reasons why they report much in the first place. Yeah, and just to give our listeners some background, SSRIs, they impact the serotonin production in the brain and assist in increasing the dopamine production. So, you know, SNRIs are another medication class medication that finds this side effect tretinoin, which is for skin, is one that can often impact sexual function in a similar fashion. Hair loss treatment. So there's there's all kinds of medications that one wouldn't expect has a relationship with sexual dysfunction. But do. And again, Simon, as you said, patients typically aren't informed of this or at least not adequately informed. Yeah. I mean. The European Medical agency did respond to requests in 2019, and they updated labeling. But all it says on labeling is sexual dysfunction may persist after discontinuation. So there's no mention of like permanent genital numbing or inability to feel positive emotions or, I mean, in my case, I kind of even feel the effects of alcohol anymore. So I could drink many, many by five pints of that. I can't feel a thing, which is insane. So that's something's happened there as well. It's just that's the thing about it. Like PSSD is kind of post it should because something like post SSRI syndrome or SSRI is a catch all for SSRI or SNRI. Yeah, because it's obviously the cognitive effects as well as the sexual side effects. And I should add in there, it's not always post. Many people find these effects during their usage and even, you know, after cessation of the medication it can last read one study for up to 23 years with one patient. So, you know, it's no small issue. And some of the literature suggests that it is a small percentage of the population. I think it was something and correct me if I'm wrong, I think it was less than 1% to 2%. But if we look at the actual number of people that that encompasses, because so much of at least in North America, so many people are on such medications, this does impact a high volume. If there's about 100 million people worldwide currently taking SSRI, as I did a count recently and only managed to find data on 32 countries and that 84 million, around 40% of which are in the US alone. So and prevalence is anywhere from in recent studies from 0.46% to around 4%. So we're talking 1.3 million plus. And those numbers that we're using that people who currently take SSRIs that doesn't count. And if you look at my family, for example, I used to say that my mom used to take the my so three out of five of us used to take them, but we're not in that 100 million. So you could probably double that number or triple even. So they said it's money, money by slightly. It's many, many millions of people have been obviously permanently damaged by SSRIs So I also want to make like a clarification here. So PSSD this is the only kind of refers to the persistence of side effects or sexual side effects after stopping the medication, but the prevalence of sexual dysfunction and other side effects while on the drug is a lot higher. So for SSRI, this is this can be up to 90% of people who have some kind of sexual dysfunction while on the drug. So that's also a very important distinction because these are the side effects while on the drug are more or less acceptance and expected. And nowadays more and more people are aware of this. Not everyone that's you know, the thing is what is not really known about or talked about is the persistence of sexual side effects or other side effects after you come off the drug. And as you mentioned, Malini, they can persist for up to 23 years or more. There's several patients in our community who've had it for several decades with no kind of improvement at all. And yeah. Yeah. So, Oren, from the clinical perspective, I have a question for you. In looking at the DSM, which is the manual that we utilize when looking at diagnostic criteria and in looking at the section on sexual dysfunction, there isn't a whole lot of mention about medication. It's it's it's in there, but not to the degree that, you know, we would expect knowing what we now know about this and this is in the most recent iteration of the DSM. So my question, Oren, for you is oftentimes I think that the guidance that we as clinicians are given is we need to rule out, well, is it the medication or is it because of depression, because we know that sexual dysfunction can come along with depression, with anxiety. So talk a little bit about that as far as what lens you look at this through and what guides you. Well, yeah, and that is actually one of the criterion criteria, which is we have to see whether the condition for any condition, you know, whether it is medically induced or chemically induced. So we try to rule that out and it's not always possible. So it's tricky because as Melanie said, we're not we're not able to prescribe medications. And most psychologists will not be experts in medications. We're familiar with them. So I think we need a better, let's say, team approach, because I will say, you know, I'll talk to the patients and I'll say, okay, you've got to go to your doctor, go to your psychiatrist, try to rule out for medical. And then on my end, we can look at the psychological, the emotional, the interpersonal. But again, it's not a one stop shop, unfortunately. So having a if if there's more awareness of this, then maybe more psychiatrist, family, doctors, the other people who are in a better position to examine and maybe rule out the medical side of things, might, you know, they might be more quickly accessible. The problem is I don't know how it is in the UK or in Germany or anywhere else but in Canada trying to find a psychiatrist because the GP's only going to have a very generalized knowledge about any of these matters. And I got to tell you one story in a second just to show, let's say, how lacking this can be. Now it's an anecdote, I understand, but I've heard so many different stories from so many patients and students that it didn’t surprise me. It saddened me but didn't surprise me. I'll say that in a second. But the point is, I think it's really important for us to have to be able to give patients or even just people who are, you know, inquiring about these things, better access to help. And I think it's lacking. So I have to say one example. So many years ago, one of my patients, she was on SSRI for anxiety. And she it's interesting because for some people it kills your libido, but for other people the libido still intact, but then it takes forever to finish or they can never finish. And she was one of those cases where she said she said, normally I can finish really quickly, easily with my partner. So she went to her family doctor, someone she's been with for many years, and she said, this sounds is going to sound crazy. It's going to sound like I'm making this up. But this is I trust her because she came to me. She asked me to this same to me because she knows I teach human sexuality. She said, Is this true? And what the is this true was was that the doctor said to her, he said he said, are you still able to have sex? Okay. So she's not, you know, physical functioning. Wasn't that said? Yes. He said, well, is it and does your partner still enjoy himself? Does he still finish? She said, yes. So he said, I'm not kidding you. You said, well, that's okay because women are not expected to have orgasm. So as long as it's not ruining your relationship in that regard, and this is a medical doctor. This was maybe about 15, 20 years ago. So we're not talking 100 years ago. So the lack of information, the lack of education and compassion, sometimes among the medical professionals that I just suggested that we send people to is lacking. So I think, again, whether we're talking about PSSD or any other type of sexual incapacity, incompatibilities, dysfunction difficulties or whatever, I think there needs to be a lot more discussion among not just the public but the professionals. So I'm glad we have people sorry, I'm sorry about this because I'm glad that I know that Simon on because this is an avenue that, you know, that has not been many people have tread through this avenue, but they're not aware of it, as you say. And, you know, the just another thing, just for I finish years ago as a 25 years ago, I think I do a math correctly. About 25 years ago, doctors were already prescribing SSRIs to men who had premature ejaculation because they knew it delayed. It can cause delays. So, unfortunately, again, these are healthy men who've got no depression and other issues aside from they were anxious about finishing too quickly. So it's not like you take the pill, you know, an hour before having sex. So these are doctors were prescribing low doses of SSRI is that you have to take every single day, even though you're not depressed in order to every once in a while last a bit longer or never even finish. So that's just something for people to digest. Yeah. So to that point, I think it's worth clarifying, you know, what we mean by sexual dysfunction, because it's not just not being able to engage in intercourse as that doctor seemed to think was the issue. Erectile dysfunction, inorgasmia, a lack of arousal, lack of libido, premature ejaculation, all of these things. And more are encompassed in this sexual dysfunction. And I think that a huge part of the problem I think there's there's two And Simon, Ruben, I want to hear what you think about this. I think first and foremost, you know, the robustness and importance of sexual health in a healthy sexual relationship is not sufficiently appreciated by the medical community. And I think secondly, because of that, or maybe in line with that, patients don't feel empowered or equipped to be able to go and have this conversation with their physician about the importance of what they're losing out on. Yeah. So I think there's definitely also a point where a patient's, when they do mention it to their doctor, they're told that's basically in their heads or that it's something they're to worry too much about as well. That's also an issue that we see a lot, for example, with PSSD it's kind of according to the diagnostic criteria. You need to have physical numbness in the genitals for it to be classified as PSSD, which is not something that is like a side effect of a mental illness or like anxiety, depression, something that and but still, even when patients go to their doctor and they say, I have problems with this or that, they said, oh, you probably worry too much about it. You know, it's psychological, don't worry. So that's also a reason why people don't want to talk about it anymore. There's a lot of patients in our community who've been to dozens of doctors, and it's always the same answer. You know, it's get referred to in psychologists, psychiatrists, you know, check your blood or they're just straight up told it's in their heads or they're you know, we've had patients who have been laughed at for talking about their sexual dysfunction. And there was a a patients who called up the MHRA to make a report of this persistent sexual dysfunction. And he was explaining his symptoms on the phone and he heard the doctors laughing about it, which is, you know, it's it's just, you know, it’s heartbreaking. Exactly. And it's people just don't want to speak anymore after this happens. Obviously, they're just like, I'll just avoid doctors now and, you know, look for other avenues. And I can give you a couple of examples. I mean, me personally, I went to the to my GP and spoke about it and I was eventually referred to a psychiatrist, which I was like, okay, but I'm because I need to get a referral to about 2 to 5 neurologist and things. And he came around to he basically said to me, I'm, he said to me like, I know, I know what's happened to is really distressing, but we need to get to the underlying root cause of what's really making you unhappy. And I was like, Well, I've been chemically castrated and lobotomized, so of course I'm unhappy. If you take those problems away, I've got nothing to be unhappy. I've got a good life. Other than that there are no underlying cause. And he was like, Well, I think you need to read into depression a bit more and understand what depression really is. And I was like, I was fine before they saw the bit of anxiety in. I was like, I went to the doctors and that ended up on SSRI. So I mean, that's my example. I mean, there's another example. I'm like Rosie from Australia. She's doing a video. She's part of PSSD Network, she went to a specialist and they should have gotten sectioned. But sort of talking about the problems that she was having. So I think what was it, delusional beliefs or something? She was. Yeah. So she basically got an SSRI from a psychiatrist had sexual dysfunction and whatnot. And like while on the medications, she talked to the psychiatrist about that and she was told to just come off. It will be fine. After six months of coming off, it didn't return back to normal. And she went back to the psychiatrist. I think it was then another psychiatrist. And the doctor, the psychiatrist kind of denied that this could happen. And Rosie was emotionally upset because of that. And the doctor basically sectioned her and diagnosed with delusional disorder. And she was basically forced to take other medications if she wanted to leave. Yeah. So she luckily she's studying and she is a nurse now, I think. And she kind of knew the law in that sense. And she could ask for a second opinion from another psychiatrist. So then she was at least able to kind of like choose which medication she wants to take. But she wasn't able to leave the hospital, whatever she was with before she actually took another medication. So at least, you know, the sexual side effects from being on the medication are not discussed much. The persistence of them are just not believed in. Not at all. I most medical are very many medical professionals. I mean, I don't blame them as well because it's and it's it sounds hard to believe doctors are trained. You know, if it's out of their body, then, you know, it cannot be. And at the risk of contradicting myself in previous episodes, I talk about, you know, hyper feminism and the over sexualisation of women. But I think that this is a situation and where, you know, women's sexuality, women's sexual health isn't taken as seriously. And I think there is data to support this in the medical community. As far as you know, I think it goes back to, you know, years and decades ago where, you know, women were called hysterical and I can't help but think that that general theme carries over. And, you know, if a woman is expressing concern about her sexuality, well, it must be something else. She must be crazy. And to the point to ask you guys in your network, I don't know how you know, if you have like members or if you count people who reach out to you. But what is the breakdown of male female people that you've experienced, like you know that you've had contact with or through the research you have? You know, so. So while we. All right. Well, we kind of we're kind of more of a support group in that sense. But I think Dr. David Healy has the biggest database of PSSD sufferers. And I think from what I've heard him say, it's more or less the same. You know, it seems like PSSD can affect both men and women equally, but there hasn't actually been any studies on that, like who is actually more affected. I don't know. We don't know that. And there's also the the point that women are also more likely to take SSRIs are more often are on SSRIs. So it's hard to kind of figure that out. But we we have both female and male in our communities and they both suffer from similar issues, genital numbness and inorgasmia being the most common ones, I would say. Okay. And that is that's what that's why I was asking, because we know that women are far more likely to receive SSRI, but as Malini was saying that there is a lot and we know the data are clear. There is a lot of bias among mental health professionals when it comes to female sexuality. So I'm wondering if, you know, because of that, women would be less inclined to come forward because, again, you go to a doctor who says it's all in your head or it's got to be this, that or, you know, like it again, you will hear a doctor and said, and it's getting better. But it's still there's the bias. If if a male and a female come with various symptoms, whether it's medical or psychological, doctors are inclined to, you know, to diagnose and to, you know, to have prescriptions based on that, you know, let's see the sex bias. So I'm assuming it'll play out with this as well, so. And by the way, you mentioned David Healy. So there's a Toronto connection with David Healy, and I'm not sure if you guys are familiar with that. When this whole scandal at the Center for Addiction and Mental Health can Toronto I want to say what was about 2020 in that year, I think about 25 years ago, people should look it up. David Healy, H-E-A-L-Y an Irish psychiatrist, and he was hired. I won't give the whole story, but people can look it up. But he was hired by CAMH and U of T, and he was famous or infamous for discussing the problems of of SSRI. He's one of the first people who was trying to highlight them and saying we don't have enough data. He didn't say not to prescribe them. He said, we have to be very careful because we don't know all the side effects. And again, this was about 25 to 30 years ago when we're we're prescribing them to children, we're prescribing them for questionable reasons and so on. And he was just saying, let's slow down a little bit. Let's make sure we know what the impact is going to be. And so, again, many years later now we are seeing that, yes, people are, let's say, having some side effects and some very distressing and life altering side effects. So, David, that's a great point. Well, I also we're also not an organization that's trying to get these drugs off the market or something like that. We what we basically want treatment for sufferers and we want informed consent about side effects. And as you mentioned, the you know, that there's just some that the medications are highlighted as like really positive and people rarely speak about the side effects, which of them can really be life altering. And so, I mean, I think Simon can speak for that. Like his life was kind of, I would say in his words, destroyed from what's you know, from these medications, even though they were supposed to help them in the first place. Yeah. Yeah. I mean, they they took what was kind of a routine like general anxiety into like just change the trajectory of my life completely. And ever since starting taking them. I was on them for ten years and I was on Citalopram in 2012. I went on to Zoloft, then found the vaccine, and as soon as I start taking them, I wasn't in a great way before I started, obviously, because I was was depressed. But obviously I went to the doctor. They didn't ask me anything about your life, my lifestyle or my relationship. Right. And they just gave me really quick prescription. It was almost as if I did the prescription myself because it was so little effort to get hold of the to tell it from. And then my mood became darker and darker and I lost interest in everything. And I started having, like, slurred speech, like, even, like, grinding my teeth, like bruxism, which has stopped since I've stopped taking them. And over time. So I felt worse and worse. And then I went back to my GP and said, I don’t these are working out, really. And they said, Oh, we probably need to up your dose. And it was the same situation. And I think the scariest thing about SSRI is, is that they don't just have these effects. They also make you numb, they stop you worrying about the side effects or the kind of the moment you walk into the GP and get prescribed these, the moment you think that you're ill, mentally, you’re done for because like that, you kind of just end up in this like down this rabbit hole for the last ten years. And then I went on to it. What's it called, Zoloft, and then that didn't work too well. And I have more and more problems like anger, like road rage, which I've never had, I never had until I took anti-depressants. And so I didn't I wasn't an angry person. So I had like anger issues. And then I went on to the worst was venlafaxine. And I was anxious about going, traveling and at one or not. And then I went cold turkey and that was just awful. Like coming off. That was I know, obviously stupid ideas come off it cold turkey. But like, yeah, it's just been hell ever since I started taking them, my life has been hell, and I've had like sexual dysfunction, like genital numbness since I've started taking them in 2012. So that sort of has had a massive impacts on relationships. It's made me confused even about my sexuality because I'm like, why do I feel I used to feel really attracted around girls and I just don't feel anything anymore and done it. And so so there was all that. And so and every time I switched, I went back onto Citalopram after the Venlafaxine all of my, all of my symptoms got worse and worse. And then I finally thought, well, this is just I can't live like this anymore. And somehow managed. ten years, like, I don't know how life just happens. And then I got so June last year stopped and then even like morning erections disappeared and the whole like genital brain arousal response connection disappeared as well. So while I was on the SSRIs I had the genital numbness. I had a bit of reduced libido, but I still have that like genital brain connection. But as soon as I stopped, that's just been deleted. So I've got like a microscopic like sex drive now and just I just feel like a shell of how I used to be. And then I don't I mean, I had the emotional blunting the whole time I was on antidepressants, but it's got even worse and stuff. And so I could just stare at the wall all day, I used to be a really creative person like I'm from a marketing background and of an entrepreneur and stuff and other stuff and interest like there was my dad's like 60th recently. I didn't even go other than my, my uncle's funeral about a month ago and I didn't go, I can't be arsed. I've just lost interest in everything. And it's not depression. It's I think apparently how they work is one, they block receptors. So you try to produce more of them. And then when you stop, you've got too many. And now you can't feel whatever the, you know, the serotonin or the dopamine as much anymore. So and I can't feel the effects of alcohol anymore. So I couldn't I couldn't it's just beyond a joke. Like I question reality most days something like how how can I just walk in and the fact that, like, you know, the government regulators have known about these risks for 36 years is just crazy. I just don't understand this. So I've just my whole world views changed. I used to be I still I'm like pro-science and pro pro-vaccine. I've got your back. So they don't they know what they're doing. And it's completely shattered my world because now I think, well, I don't I don't know who I trust now and it's been very difficult for my relationship, my mum as well, because she's been in that 40 years. She's done a prescriber course. She even worked as a nurse after sex offenders prison, so maybe she was handing out prescribing SSRI is that I'm so it's yeah it's it's just had a massive impact, I’ve quit my job, I worked in marketing for ten years I've fought even I struggle to leave the house now. And so I just don’t even and all I've got now is helping out a lot with this charity and keeping a roof over my head. I'm. Yeah, it's just shit. It's really shit. Yeah. To say the least. Like, Oh, my gosh. Simon, I'm sorry to hear all of this and to know that you've gone through this, but I think it's important for people to hear, you know, we're not fearmongering about medication. There's a time and a place for medication. And we as clinicians certainly understand and appreciate that. But there are real side effects, real long term consequences. And it's not just sexual dysfunction like Simon is describing. His day to day life has changed. Right? It's it's a snowball effect for you. SIMON What would you say is is the biggest change? I don't know if it's possible to boil it down to one, but what has changed the most for you? Just like human connection, really. Like I can't connect with people anymore. I don't feel any I don't feel like love for my family anymore. Like my family could all die in a car crash tomorrow. I wiouldn’t care. So I don't feel any emotions. I've also got negative emotions, but and yeah, I think that's the biggest thing. I think like I don't engage with the outside world anymore because it's sort of too traumatic. Like I'm sort of, you know, it was my friend’s stag-do recently, obviously before his wedding, and that was I can't go. So I can't even feel the effects of what, like what's the point? So I just write stuff off. I don't even, like, entertain the idea of doing of living a normal life anymore because it's all been wrecked and there's nothing I can do. Yeah, there's nothing I can do. So I'm obviously there's a lot of research going on and I think I'm hoping that, you know, the audiences at some point I'm. But yeah, it's just it's yeah, it's devastating. It's really devastating because you, you think of like the life that you could have had and and the fact that it's just put on a completely different plane. But it is also I've got to do a lot of recalibration as well, like because I know that I've got so many problems with relationships and friendships and arguments and anger and stuff that wouldn't. I know it's normal to get angry just the way I've been the whole time I've been on SSRIs and SNRI drugs. It's just been completely different. I'm so about to do a lot of recalibration. Like I'd love to look back on all. That's why that happened and that's why you haven't progressed in your career. That's why you, you know, you don't do anything anymore. You don't seem to have any interest in. And whenever I do anything now is because someone else wants to do it. So like, if I, I don't have any, like, spontaneity anymore. So, like, I'll go for a run with my sisters or something like that, but it will be their idea. Otherwise I just sit at home all day doing nothing like I do. I've always been into cars, always been a really big petrolhead and I just don't feel any euphoria from driving fast cars and light motorbikes anymore. I feel nothing. So it's like, yeah, so you keep the negative emotions which which can be really brutal, but there's no sort of positive emotions, which kind of. Yeah, it's, it's like being worse. I've be murdered, but you're were allowed to stick around to witness. Yeah. It was liking it, likening it to being in prison. Yeah. It's a similar sentiment. And it's really difficult being around like somewhat that, you know, you would have found attractive before. But now your body has no physical response at all. So it's like just trying to live a normal life feels masochistic and like a form of torture. So do the best way of dealing with it is to live a smaller life. So like, so like now I just stay at home and I might go for a walk once a day. I was meant to meet my parents yesterday and sit in a movie set up for like two days and I didn't bother saying them, so I haven't. The only thing that's changed as I saw them is I'm just a month older. So what's in that? So I just don't know a way out really. That's that's the challenge. And I don't want to. What really hurts the most, though, is how little like I've managed to get responses from the MHRA, the medicines regulator in the UK. I've got a response from the Royal College just psychiatrists and even the patient Safety Commissioner. Not a single one of them have shown any compassion. They've said, like the MHRA said, get your hormone levels checked. So that I'm somewhat the oldest, says the Patient Safety Commission has said we just don't get under-resourced. Well, my response, it's high. It's more people than this. People take this condition. And then the Royal College of Psychiatry said, I need to go and say get my mental health checked. And it's like, I don't have depression. I've got an injury. I have an injury. That's the end of the discussion. Like I've been injured by these drugs is probably brain damage, is probably nerve damage. We don't know yet. I'm sure we'll find out in time. But like so, I think what really affects a lot of sufferers the most is not being taken seriously enough for me. I've had that from not just the profession but also my family bit as well. That's been a battle to get them to realize why. My mum said, Oh, you seem to have been a lot worse. You've sort of plummeted since you've been off the antidepressants. I was like, I was fired and I had some withdrawal problems for about three months, but I take it off really slowly. But it's the enduring problems that have persisted like devastates my life. I'm so and so. People got this from one tablet. I mean, for me, I've taken about two and a half thousand over ten years, so I've just got worse and worse over that time. But to find out that you've been unknowingly self-harming from what should have been the best in your life, it's a lot to process. Yeah, and I don't think I'll ever get over it because it's like. Mm. And it's not. It's hard enough knowing that you've wasted those 11 years of your life to also have to live with this in the present and of an uncertain future. You might not get back to is too much. Most days it's too much. So I just stay. I just stay at home and just lay in bed or just I might go for a walk or watching TV, but it's it crushes your soul. Like when you got there. When this happens, it's like I'm and I'm one of many people. I mean there's there's a Reddit group it's grown from like 4000 to over 9000 in the last eight months. So this and the general antidepressant group on Reddit is only like 44,000. So if you think like that's quite significant and there's a lot of people struggling out there and there's a lot of people like me who are left with these problems for a long time and don't know about this condition. Yeah. So that's that's one thing we're trying to do is to sort of try and drive awareness that the condition is even a thing. So so there's there's a lot you said there. Simon, first, thanks for your vulnerability with that. I know that it's not easy to to share that, especially. With. A public audience. But couple of things. So I had to really check myself there because I went into therapist mode. I had to remind myself, this is a podcast, not therapy session, but the honestly, the rage that came up in me listening to this and the empathy and compassion that I feel for what you've been going through is it's unreal. And sadly, I'll say the number of clients that I and I'm sure are and have heard similar stories from and not being taken seriously by their medical practitioner who's supposed to be supporting them and advocating for them just isn't taking the complaint seriously. And I hate to say, but oftentimes it's then dumped on us as psychologists and psychotherapists. Well, you know, go see a mental health practitioner, you're probably depressed. You're probably not dealing with your anxiety properly, whatever the case may be. I've lost my train of thought here because, like I said, I'm just I'm truly outraged by by hearing this. And the fact that you're just you and many other patients are just prescribed another medication while you know you're dealing with this. Well, let's let's add another medication. Let's try another medication, rather than addressing the fact that it's medication that is indeed causing this. Yeah. And then a lot of people are so desperate they'll experiment with like supplements. Why? There's no proof that they even how it's potentially going to do more damage. So I think the my best advice to anyone who is suffering is help raise awareness and help drive raise funds for research, because that's our way out is to at least find out exactly what's up. Yes. And that drives my memory of what my other point was, is exactly that, that, you know, when when we do go through something tragic or traumatic, the best way to make something good out of it is perhaps by helping others. Yeah. Yeah. It's good instruction. And and Malini in our podcast, we always have a section where we say, you know, what can we do about it? And using that, Malini and I are the ones to provide some answers. I have a question that I'm going to ask with respect to that, but before I do ask that question, I'll ask Ruben and then I guess as well, which is aside from, you know, education, aside from trying to get funds to, you know, to raise money, to raise funds for research and so on, what else are you to trying to do and what do you think can be done to help people who are dealing with PSSD? Yeah, well, the first thing is basically kind of bringing people together with the same condition and then providing a safe space where people can talk about their, you know, side effects or their issues without being told it's not real or imagining it or just providing a safe place. Also, research resources in terms of what to do when you run into this, because when you kind of develop this is the you're pretty much on your own. Well, most people go to their doctor. They have me sometimes not the most I mean, the most positive experience as a as I mentioned before, they might suggest that they've got a medication. And fortunately, in the case of PSSD, this might make things worse. As the example of Simon, he was on several medications over the years and gradually become worse. The symptoms got more worse over time. So we try to kind of guide people and we we don't sell people all you should do this or that. You kind of give them the information needed to make their own educated decision. You don't want to kind of think for people who want to say, okay, look, this is our experience. Those because there's so little research, there's only kind of anecdotes out there. So you kind of give like, oh, this person tried this medication, might have felt a bit better, but, you know, just be careful. This might make you worse. Just keep that in mind. This kind of things. Yeah. I think just there's also kind of a list of specialists that do have experience with the condition and has kind of counseled people with the condition. And we try to refer them to these people as well. There's a counselor, and I think she's in Canada, Yassie Pirani and she counsels people with PSSD, tries to teach them coping mechanisms, what to do. The thing with this is, is that when you develop, it's you kind of have some kind of PTSD response where you're also constantly reminded of having the condition. So because kind of sex is everywhere in society nowadays, and if you know that you cannot have it or you cannot maybe form the relationship with someone, but you're facing this every day, it's really hard for sufferers to see because if you start to see, you see relationships, you see, you know, all kinds of sexual things, and people really need kind of some guide or how to deal with that, how to place that without kind of losing their minds, because it's really it's really an isolating experience. If you are alone and you have what many people really think that they'll never find love again or never be able to see a love again or, you know, be alone for the rest of your life. And that's a very hard thing to kind of go through for patients. But I was going to ask you and I have to be very careful with the wording here. Each country has its own laws and norms, but I know that in Canada and the states and elsewhere, there's a lot of now research being done on the psychedelics and psychedelics for psychological conditions and potentially for medical conditions as well, and have are you aware of any efforts with psychedelics to help with that? So there's patients have tried it. Some say they're better. Sometimes it's it's very anecdotal. Right. So I've heard reports like one of our board members, as I mentioned, Rosie, she did experiment with mushrooms before, and she got extremely bad afterwards, even worse. So and some patients claim they feel better after experimenting with, for example, mushrooms or psychedelics. So it's really very hit or miss. There's no research on it. If we could try this out in a kind of a clinical setting, then you could give a better answer. But it's just like, you know, you can you have to kind of control for all these things to know it's not a cure. That's as much as I can say. Okay. But these are all anecdotal. And so you're saying that there's no, you know, of no trials or anywhere where they're looking to see. Yeah. Okay. All right. Yeah. Well, right now the research that is going on is basically trying to find out the mechanism mechanism behind PSSD of the and many of these things are basically feeding SSRIs to rats and withdrawing them from rats and then seeing what's what is effective and trying to figure out trying to isolate the mechanism or mechanisms that kind of are responsible for. Okay. And and. Simon not and I hope we come across the right way, which is, again, when we hear your story, it is heart wrenching. It's enraging. And, you know, it's not just what happened to you, not just the lack of education before you even took them, the risks and so on, but the treatment that you received. As you're saying throughout the whole process, lack of empathy and compassion, not taking it seriously. And again, Simon represents millions of people who've had similar, whether it's so or other issues where you go to the people who are mandated to help you and they do, you know, and they treat you with such, I'd say ignorance almost, you know, and so on. So notwithstanding all of that, I'm wondering, you know, because Malini in the clinics that that that we run that, you know, we have many people with conditions that we know are not going to change the worst case scenario or someone has a, you know, a terminal illness and, you know, and we try to help people somehow make it through the day, make it through the next day, you know, knowing that it's not going to get better, we can mitigate some of the harm of the damage, but certain things will never go back to normal. So when you hear something like that, does that just fill you with despair? Do you have little hope here and there? Like how do you deal with something like that? The worst thing. I suppose it's the whole anger, denial, acceptance thing. Like like when I first found out about it, there was an article in a major paper in the UK last Christmas, and I thought I accepted it instantly. There was no denial because I knew in my mind, Oh yeah, that makes sense now. So there was no some people go through a lot of denial because they're still on the drugs and then it takes time. So I didn't have the denial part, but like the acceptance part has been really difficult because like, I just feel so, like, full of anger because it's like, why should I have to accept this? I'll never accept this. You never get used to being like this. So in a way, because you don't get used to it. But the problem is I don't. Humans haven't evolved to deal with this type of injury, as far as I understand. I mean, there's a whole host of injuries. I'm sure the body's managed to develop a response to, but this is a manmade like chemical, some form of damage. So it's like I don't know if the body's kind of in fight or flight mode 24/7. It's like that's not normal. Why can't you know? So I'm so yeah, it's really difficult, but I think that is the minute I've kind of accepted it in the hope that I won't have to be like this forever, I'm so, yeah, it's very difficult. Like it's been like. And you reminded of it all the time. Like whenever I wake up in the morning, I might have, like, a nice dream. And then within, like, a few seconds of waking up, I'll go, Oh, Jesus, I've got this. So I'll try and go back to sleep again. So just think or roll over and yeah, try to go about sleep. It's like I can't deal that. So I managed for months working in quite a high pressure job after finding out about this. But then after that I was like, I can't do this anymore. So like half of kind of just withdrawn from like trying to live a normal life. So that's, that's how I'm doing that. I'm not really doing that very well. But like, that's kind of my “method” in inverted commas at the minute. Yeah. So I have three recommendations I guess, or into the question of what can people do about this. So first and foremost, I would say for patients who are suffering from this, of course, easier said than done, but try to optimize your life in all other areas that you do have control over. So what I mean by that is focusing on good physical health, engaging in physical activity, having a good diet, getting as good sleep as you can and engaging with people socially. And this is a common recommendation that I make to people for many different disorders because these are things that we do have direct control over. My second recommendation is working on our self advocacy skills. Like we've spoken about here, it can be very difficult to talk about sexual dysfunction, especially, you know, in situations where it seems that the medical community isn't especially accepting of this. So learning what's the data say, learning the language to use with your doctor and again, just developing general strong self-advocacy skills. Thirdly, my recommendation for clinicians is to learn more about this disorder, learn more about, again, the mechanism. What does the research say as therapists and psychologists, what can we do to best support? Again, optimizing our patients lives outside of the sexual dysfunction and even on our end, advocating more, advocating with the medical community and to develop a better understanding as a community, as a team with regard to the real life impacts this is having. Right. And so with that of the value, I think we're going to wrap up pretty quickly. But I do want to say the other thing to add to that, when you talk about self advocacy and Ruben and Simon, this is where you've really come in. We talk about this all the time, trying to find like minded people or people in similar situations because it can feel I mean. SIMON You've spoken about this so eloquently, this feeling so isolated, feeling alone, disconnected, right? So, you know, trying to find people who might help you feel a little bit less so. And I use this analogy. I say when someone's dealing with something that, you know, is it's affecting their life. So traumatically I say anything we're doing to us, it's like you're walking into my office with a plastic bag over your head. And I said Today, know what best? Maybe I'm going to poke a few holes in that too. Okay. I don't want to oversell, don't want to talk to you. Too optimistic. But you know, those little holes, it gives you a bit of space to breathe, literally so. Right. So what you guys are doing by, you know, by again, by forming this group, this community educating. I really do hope that, first of all, people will see this video. Second, that people will go to, you know, we'll have the links in the description, will go seek you out. And I hope that somewhere along the line that it helps you, you know, know that, as I said earlier, like you are helping others. And I really hope that that this will also help you yourself. And I hope for again, I hope your network, I hope your advocacy really produces some positive results. So I want to thank you to for coming on and sharing the experiences with us. Thank you. Yeah, we would like our listeners to share their thoughts as well. You know, there are people suffering in silence with this comment on this video. Share this video with other people. Email us. Let us know what your thoughts are. But yes, Ruben, Simon, thank you so much for the work that you guys are doing to bring awareness to this issue. And thank you for being on our show today. Thank you for having us. Right. Is there any last thing that either you wanted to, you know, to tell the listeners. It's just, hey, on the note that you were talking about, I'm like patient stories and things like that in videos, interviews like this, I'm I as a sufferer, I find them really quite healing and therapeutic to watch. So and people like Yosef went diving to help him with that taste and loads of like videos interviews of people in the same situation. So if anyone's like really struggling I've gotten involved with things like that can help just by just being lectured to by professional. And even if it's online, it's so much so valuable compared to like getting gaslighted at your doctors. Well, thank you again. And until next time, keep your eyes on the road and your hands upon the wheel.