Stories Library

After stopping an SSRI, Emily's sexuality did not return

Submitted by comms_team_s March 14, 2025

Emily Grey, a former university student from British Columbia, Canada, shares her harrowing journey of experiencing a medical injury due to SSRI withdrawal. Initially prescribed antidepressants as a teenager, Emily believed she was making a safe and informed choice. However, years later, during an attempt to taper off her medication, she faced a sudden and devastating loss of sexual sensation, brain fog, and fatigue—symptoms that would persist for years. As she sought answers, the medical community largely dismissed her concerns, leaving her to find support within the online PSSD (Post-SSRI Sexual Dysfunction) community. Emily has since become an advocate for informed consent, pushing for better research and recognition of the long-term effects of antidepressants. In this eye-opening episode, she discusses her personal struggles, the systemic barriers to acknowledgment, and her work in raising awareness for others affected by similar experiences.

You can find out more about Emily, PSSD, and related organizations here:

Transcript (AI generated)

00:00:00    I just would go to the doctor every few months and get a new bottle of it and it was like taking a multivitamin I I didn't give it all that much consideration and it was never impressed upon me that this was a serious decision I was making if you want to continue to get referred for more testing you have to not mention that you believe it's an SSRI injury or they will just like not say anything and you'll walk out of the office with nothing so because this disorder isn't widely recognized it always ends up with me

00:00:29    having to sit there trying trying to educate the counselor on my experience and they're and trying to kind of Coach them into understanding what I'm going through when the point of counseling or therapy is supposed to be the other way [Music] round hi I'm Daniel Owens from in compass initiative welcome to ICI stories where we give people the chance to take back control of their story when we enter the mental health system we can become cized in that we end up giving up ownership of our narratives

00:01:08    often without realizing we let others Define what is happening to us and why we take on their language and their Concepts and incorporate them into our own identity but then for some of us we reach a point where we start to feel that something is wrong that the story we're being told about ourselves doesn't quite fit with the reality we're experiencing bit by bit we start to question and probe and with it comes an emerging sense of ourselves as narrators of our own lives until eventually we're ready to tell our own story as we see it

00:01:42    there are many many stories like this this is one of them okay um now I'm pleased to introduce to you all Emily Gray um Emily could you give us a bit of a brief introduction about who you are where you're from and your background please yeah um my name is Emily Gray I'm from British Columbia Canada um I was a student um in my third year of University when I experienced a medical injury during a taper from the SSRI medications atalo pram and I've been trying to speak out about that experience since then and trying to help

00:02:20    and encourage other people to do so as well excellent okay thank you Emily and just just bringing it right back to the very beginning um just tell us what was your life like before you came in contact with the mental health system uh I was 17 years old at the time i' been struggling with symptoms that were diagnosed as depression for several years um I had had a a period of e a eaing disorder or disorder eating for a year though that had resolved by the time I encountered the mental health system um but it was just kind of an

00:02:58    additional background Factor that was factored into the decision to start medication um but other than that I was a pretty typical teenager um you know I was just trying to understand what my life was going to be like after high school going through a lot of the typical things that teenagers were grappling with at that time in their lives excellent okay and and when you um first sought this treatment was it with a psychiatrist or a GP yeah well I had first saw treatment simply from a counselor or rather my

00:03:32    parents had sought it for me because they were concerned about me and they thought that that would be beneficial to me and then I hadn't really experienced any uh positive impacts from seeing the counselor for a while so she suggested a psychiatrist and I was initially kind of lukewarm on the idea but I thought what's the harm in trying what's the harm in just talking to them so I went to an appointment with a local youth psychiatrist what was your initial appointment like you how did you feel um were you given a

00:04:04    diagnosis the initial appointment was pretty unremarkable um she just asked me a bunch of questions about my life and my my mental state up until that point I didn't I in retrospect I think there were some pretty big factors that were missed um I'd gone through a period of pretty intensive isolation kind of leading up to the the point when I started experiencing the depressive symptoms and I think I at the time didn't identify that as one of the reasons that I was experiencing depressive symptoms and no one else

00:04:36    seemed to either um but that's my mature self in retrospect thinking back on that experience um at the time she was just asking me a lot of things about you know friends and had I been harming myself and why had I been restricting food intake and um yeah it I don't remember a lot of it because it was just very kind of mundane questions that you would likely ask in an appointment like that but um at the end of it she noted that I had already tried counseling and so she suggested after that first appointment that I try

00:05:13    ssris so then you took the the ssris what happened to you when you're first taking the meds did you feel different did you feel better um on the very first day of taking them I was on a very low dose to start out with but I did notice some changes within the first 24 hours first I had some of the typical symptoms that you would experience when when taking a new medication I felt mild nausea um I did actually within the first 24 hours or so notice a slight reduction in sexual sensation like sensation in my genitals but it wasn't

00:05:49    dramatic it was mild and I thought well if this is a side effect I can live with this um now I'll note that she did not at any point during our appointment bring up that that was going to be a side effect I had to learn that from Google After experiencing it um but I accepted that that was going to be a side effect and I would proceed with this trial period of the medication um after a few days I did start to feel what I perceived as a reduction in depressive symptoms in that I wasn't ruminating as much I wasn't

00:06:23    feeling as intensely self-conscious and from that point on um things felt a bit easier for a while or they did and so this medication was presented to me as a very safe option as that you know there wasn't really any risks associated with it I could take it if it made me feel better I could not take it if it didn't um and so I it did was making a slight difference so I just kept taking it and shortly after that I went away to University and I always thought well I'll taper off next time I'm home and I

00:07:01    can kind of do so in a safe environment and then the right time just never seemed to happen so I just stayed on the medication and I was on a very kind of low moderate dose that whole time but I was on it consistently for like the next four years right and it just became a background part of my life I didn't think about it um I just would go to the doctor every few months and get a new bottle of it and it was like taking a multivitamin I I didn't give it all that much consideration and it was never

00:07:29    impressed upon me that this was a serious decision I was making and so there was no discussion with your original psychiatrist or any subsequent ones about how long you should be on the drug or like a plan for getting off them or how you should get off them no not really it was just um when you feel that you are in a well enough state to taper off then we can make a plan for you but I never actually saw a psychiatrist after that initial couple of appointments I had with her during the onboarding to the medication after that

00:08:01    it was just getting refilled by GPS yeah I think this is a really interesting point just in general is you know um that so many people they only have that initial that initial uh appointment and then they don't have that ongoing relationship with the psychiatrist so the psychiatrist is completely oblivious to what happens after after they've prescribed the drug well exactly and uh she was a youth psychiatrist and I was 17 at the time when I first saw her so after I turned 18 I aged out of her care and then I

00:08:33    wasn't I I was never transitioned over into an adult psychiatrist or so I never had any appointments with a psychiatrist as an adult so you were you were you were going on and it was kind of helping you um to some extent um uh for for several years so what was the turning point for you what was what was the point when when things you started to change your perspective you know when I was when I was 17 I had never been in an intimate relationship um I'd never even had a boyfriend at that point and so the sexual side

00:09:09    effects that I was experiencing on the medication was just kind of it wasn't a big deal to me yet um but as I matured and as I did start to have relationships I realized that it was interfering with my ability to be intimate with someone I just didn't have the same desire I noticed in other people I I didn't have what I knew was a normal sexual response and I mean I knew what my normal response was prior to that even even despite not having had a sexual relationship and and I knew it was the medications doing it um I just got tired

00:09:43    of of having to try to navigate that side effect uh so it was for that reason that I decided to tap her off the medication um in my early 20s no one talked about sexual side effects as a as a possibility or you didn't discuss it with anyone the only times it ever came up in a clinical setting was when I brought it up and there were a couple times during those several years I was on them that I did question doctors about it um and there was a couple of times they tried to prescribe me bupropion on top of the

00:10:17    SSRI to try and negate that side effect um and I think I did take a round aprian during that time but it didn't make a difference um but no it it was never ever brought up by a doctor of any form and it was never talked about a serious as something that could like genuinely impact a person's life and it also there was no hint at all that this could be an ongoing problem after cessation of the medication all of them seemed completely confident that once I was off the medication that that would resolve so

00:10:53    you got to the point where you're like this is interfering with my life this is interfering with my development is a is a is is a is a sexual person as an adult um I've had enough of this I want to get off so what happened then so I went to my normal GP who'd been prescribing it for the last couple years I told him that I was looking to get off ssris and he said okay that's fine we'll reduce your dosage um and we actually did quite a long taper so it was over several months so first he just reduced it to a

00:11:21    half dosage and I experienced some mild withdrawal effects like some nausea for a little while um but it wasn't too bad um but I did notice that despite the reduction in dosage I didn't have any Improvement in sexual function and then we went down again so I I was tapering off I was I was tapering off down to zero over over a two week period and over the course of that two we period I didn't notice any Improvement in fact I noticed a worsening and then one morning during that two weeks I woke up and I

00:11:57    immediately knew oh something is really wrong something has changed I could feel like this cold sensation in my genitals and as the day went on I realized I have lost I've had a serious reduction in feeling in my genitals and all ability to feel any sexual sensation at all is gone it's gone from my body and the days passed and I started to get more and more horrified cuz it wasn't going away and just the completeness of it like not to be I don't want to be too graphic here but my clitoris felt like a knuckle

00:12:35    like there was Zero sensation Beyond just the faint sensation of something touching the flesh um so I made an appointment with my doctor I told him of the symptoms um and they were like it's going to go away you know it's just a bit of withdrawal you're fine just wait it can take a few weeks to get back to normal deep down I knew something more has happened it doesn't feel like that this is too dramatic um but again I trusted what they said and I said I told myself just wait it's going to get better and then it didn't and now it's

00:13:08    been six years so so you had this this change um and uh were there any other symptoms you experienced at the same time yeah yeah there were definitely accompanying symptoms so that same morning when I woke up the most obvious and immediate symptom was that genital coldness but I also did notice as the day went on I was feeling very fatigued I was feeling mentally foggy like like my I just couldn't process information at a normal Pace it was taking me longer to intake thing intake any information

00:13:43    and my memory wasn't holding on to information so someone would tell me their name two minutes later I'd have to ask again and that wasn't something that had been the norm for me prior um and that has that has also continued to this day um and as it turns out that is a very very common experience for people who also experience these long- lasting sexual symptoms following SSRI use there are an array of cognitive and emotional symptoms that accompany this disorder right I see and tell me so so you you've you you've had this

00:14:26    profound effect on you that you were not warned about by um any medical professionals how did you get to the realization of what had happened to you what was the reaction of of of uh the medical system to that just tell tell us a bit about that sure so um initially I was trying to be calm I was trying to be rational about it I was thinking there's got to be a reason for this someone's going to have answers so I went to a gynecologist I went to uh another I went to other GPS I went to a neurologist an

00:15:03    appointment I had to wait seven months for um I spoke to a psychologist um I went to I I got a hormone panel done I got blood work done all these tests and everything was coming up normal no one could explain to me why I was experiencing this um and so I started Googling I started trying to find anyone else who was experiencing the same thing and then I started to find pssd which is post SSRI sexual dysfunction and realize there's a community of people online who are experiencing identical symptoms to mine

00:15:40    and in identical circumstances to mine and they also are having the experience of just not being able to find any answers within the medical system um and it's not just not being F able to find answers it's also that they're struggling against disbelief of their symptoms they're being told it's just a symptom of depression when I can tell you that I didn't experience anything remotely like this during the period that I was either prior to medication or on medication it doesn't feel like anything that was previously

00:16:13    described or diagnosed as depression and that is the common story reported by people with this disorder yeah I think this is a common problem um that drug harm people have is that a lot of the vocabulary that's used that we use to describe what's happened to us is medical uh vocabulary often dominated by Psychiatry so then when we try and explain these symptoms to other people we're we're sort of stuck within this Paradigm and so it's no surprise then that the Specialists when they hear us explain what's happening to us that

00:16:51    they interpret it through the lens that they've been trained to to hear so what happened next when when you you you you realize that you likely has symptoms like pssd what what did you do when you spoke to the medical professionals about this and how did they react to that so I would start bringing up the possibility of PSD with them and I would sometimes print out some of the few papers that existed at the time and bring them and and try and encourage them to read them and like ask them you know have you heard of this um and there

00:17:27    was a real resistance to receive any of that information I remember bringing those papers to the neurologist that I spoke to he wouldn't even he wouldn't even look at them he wouldn't even take them out of my hand um and I could just see the immediate shutdown like immediately the response is oh this person is anti- Psychiatry this person is anti- medication this person's crazy um you know there's just there's this really noticeable switch that happens as soon as you bring up that you believe it's possible your symptoms were caused

00:18:00    by the SSRI they don't want to hear that they don't want to engage with that possibility um and what's interesting is after that point they don't refer you to other doctors they don't refer you to other Specialists if you want to continue to get referred for more testing you have to not mention that you believe it's an SSRI injury or they will just like not say anything and you'll walk out of the office with nothing and the thing is it's not just the really arrogant you know um aloof medical professionals that you know suddenly

00:18:32    exist it happens to the ones that would will be friendly and warm to you um but then the moment that you mention the possibility of iatrogenic harm suddenly the face body language changes the smile disappears The the body language becomes closed and suddenly you feel like you're in this adversarial situation um what what what was your way around that I mean what what did you do when fac with this this kind of Roadblock uh from the med from the medical um profession well the only place to turn for understanding and support at that

00:19:11    point was to others who were experiencing the same symptoms so I started to engage more often with the pssd community that existed online um and just the incredible similarity in our stories jumped out at me again and again um and by doing that I managed to find a few other people within Canada and within one more specific locality who were suffering from similar symptoms and who had had a similar experience um and so I wanted to reach more people and to be able to network U more broadly so I created a website

00:19:47    called uh pssd Canada which later evolved into the PS Canadian pssd society and through that I was connecting with people and trying to Rally people within Canada to Advocate within our own Medical system and to appeal to our media um and that got the attention of a clinical psych a clinical counselor from Vancouver named yasi panni um she had done a lot of work um in her career with sexual health advocacy and she was really interested in our stories and so she began to um engage deeply with us

00:20:23    and to um and to start to help us Advocate and she um was a big source of momentum in our community to to getting more recognition within the Canadian system and so we were able to make some connections with uh within the Canadian University system that has led to a paper being published and has led to a numerous surveys trying to collect preliminary data about the PSS people suffering from pssd there are so many unanswered questions about this disorder that we're trying to uh narrow down that we're

00:20:58    trying to get answers to uh and really at this stage um we're still trying to be we're still trying to get just the basic information in data I know a lot about the experience of having this disorder I know a lot about what people in this community go through but it's anecdotal um and we need the studies to actually back this up so we have come a long way but there's still so far to go thank you and I think it's remarkable how you know you you've gone and you've gone to a doctor you've trusted them

00:21:41    they've told you that this this medication is going to be safe it's severely injured you then they've di dismissed your experience so there's kind of like there's almost like a double injury there of of not being um not only having having the injury occur to you but also the denial that it's ever occurred to as well um and then and then very quickly you're in a situation where you you in order to proceed ahead you you've you've gone from a patient to an advocate or an activist right so what would what would uh if if if someone

00:22:16    who's a skeptic say well you know these drugs have been studied for uh 30 Old years if this is a real problem then we'd have the data on it by now why do you think that that's not the case so the thing is the long-term effects of ssis have not actually been studied in any depth and certainly not the effects on sexuality um as far as I know there is only one paper prior to the ones that have recently been published regarding pssd that did any measuring at all of long-term impacts of SSRI on sexuality

00:22:51    um it was specifically done on young women who took ssris during adolescence and they did show uh statistically sign ific reduction in sexual drive and number of sexual experiences after uh in adulthood even long after taking the medication um and Audrey barck was one of the um authors on that piece and I I will make sure that you have a link to that after yeah so it just hasn't been studied first of all in any kind of formal capacity and secondly when patients are reporting this to their doctors their doctors aren't aren't

00:23:27    compiling that into some kind of data base so they're having this interaction with the patient um often what's being sent to the patient in those interactions is you know this is a symptom of depression um maybe it's nutritional maybe it's hormonal the doctor doesn't believe that it can be caused by the SSRI so they are just denying that that's even a possibility so the data is not being compiled anywhere in relation to the SSRI or or compiled at all so so where would these numbers be coming from to prove that

00:24:01    this this exists right the only way for that to happen is for patients to find each other and say hey there's a pattern here can we please get some actual structured Research into what we're all experiencing yeah so this is the thing I I see it so much in the the um in the community and in my interactions with a medical professional there's this kind of circular logic of like well it's not a thing so because we don't think it's a thing we're not going to look and build data because we don't think it's a thing

00:24:35    and then because there's not data then it's not a thing people will cite the lack of research as a reason to not do research you know so how long have you had had pssd now for I have at pssd for six years okay and and how just if you don't mind U my asking how has it affected your life oh gosh the I can't even imagine what my life would be like if this hadn't happened who I am and the trajectory of my life has been so profoundly altered by this disorder I I have attempted to have relationships with this disorder and it

00:25:12    just hasn't been possible for me um that's not true for every single person with pssd but that's definitely my experience being physically intimate with someone when I can't feel any form of sexual arousal and I can't properly feel my genitals it just feels so strange and so wrong and so deeply alienating that it's not worth it it's kind of re-traumatizing to try and engage in that for me so I I don't really have any hope at the moment like in this condition that I'm going to be able to have a relationship in my life

00:25:50    and that is really really devastating for me as someone who wanted to get married and have a family um and then there's the cognitive effects so I when this happened to me I dropped out of school and I thought that was going to be temporary um and it turned out not to be because my working memory and my ability to intake information has been so profoundly damaged I used to be able to like last minute research and whip out an essay and and remember and retain all that information and I absolutely cannot do

00:26:25    that now it takes me many hours longer to do what I used to what I used to be able to do in an hour and it it profoundly was has impacted my ability to engage academically and it it's profoundly impacted my ability to have a career um and the the emotional impacts it's it's both the the emotional impacts of the injury itself like what the injury did to me emotionally and the trauma of having the injury and the trauma of having to be vulnerable and humiliate myself over and over again with doctors and

00:27:03    sometimes and and with random people in interviews trying to articulate my experience it's just incredibly draining I just feel I feel just like a different person I'm I'm not the same person at all as I was prior to having this injury just on any level um I don't even like to try and imagine what my life would have been otherwise cuz it makes me feel too angry I've heard you talk about this idea of disenfranchised grief do you want to talk a bit about that yeah absolutely so disenfranchized grief is a term in grief psychology uh

00:27:40    when somebody experiences a loss that is not recognized by the society around them and they often it it it compounds the grief and delays the healing process because they don't find understanding within their Community or within their family so I know this happened to me but also such a common experience for people with pssd is trying to articulate what they're going through to friends to a partner to their family to doctors and it just not being comprehended the loss of your sexuality and the cognitive

00:28:18    effects that often come with that in this condition are so profound it's such a profound uh change it is such a horrific loss on a personal level um but people tend to not get it like that that's been something that's been pretty hard for me to get my head around if I say to someone so I experienced a medical injury that made it basically impossible for me to have a sexual relationship my sexuality has been chemically removed from my body and I cannot experience that anymore often the response is oh

00:28:53    that's frustrating it's not frustrating it's completely devastating and so they don't really know how to respond they don't know they don't understand the scale of what you're communicating to them when you say that absolutely yeah I think one thing I've learned being part of uh you know this this whole world is is is just there seems to be certain established forms of suffering uh that people recognize and increasingly uh mental health struggles are being recognized as as is a is a real profound

00:29:30    form of of suffering but iatrogenic harm particularly iatrogenic harm from Psychiatric medication is not something that's widely recognized and so there's almost like this um hierarchy in terms of concern for people you know that that if if PE people have a a me mental health problem then they should be treated with compassion and empathy Etc and and you and you get a lot of people who are mental health Advocates and they right want to um you know spread awareness and spread and and spread understanding and empathy for for people

00:30:03    who are suffering with these kind of conditions but yet these very same people who Advocate empathy and and concern can then turn around and be extremely callous and cold to people who have been iatrogenically harmed like it's it's it's almost like a complete 180 in the way that they treat them um I don't know if you've experienced that yeah it's it's that there's an established narrative um and they see our stories as going against that narrative even if we haven't attacked any of those people and

00:30:34    haven't tried to silence any of those people it's it's quite discouraging and I think we just have to keep on trying to be measured and trying to say look this does not negate your experience of mental illness and this does not take away from any of your freedom to choose your treatment process um but you're not going to silence me about what happened to me absolutely well said and you know with these stories we often talk there's kind of a trajectory of um at ICI with these stories where people

00:31:05    you know they they they come into contact with the mental health system they they get given a narrative about what's happened to them and and and the supposed treatment for that the people either reluctantly or actively buy into that and they they accept that narrative and then something happens to them which jolts them out of that that narrative and then eventually they they kind of become Des psychiatr so to speak where they where they sort of break up with a mental health system and and go their separate

00:31:39    way and and develop a um an alternative identity now obviously it's a bit different in your case um um given given you've had these symptoms for um six years so how how do you see your relationship with the mental health system now my initial relationship with it was one of trust I was young the people around me were encouraging me to engage with the system and with nothing but good intentions on their part um I I went into it I accepted certain treatments um and I remained in that uh place of trust for years right up until

00:32:21    I developed these symptoms and realized there was no help or recognition for them you know I just had a very I think naive view of how the system overall worked because the people I were interacting with I was interacting with was kind were kind I wasn't thinking about the larger systemic incentives at play when it comes to pharmaceutical companies not wanting to be transparent about potential long-term effects of their products I wasn't thinking about the institutional incentives of the mental

00:32:55    mental health industry institutions um and how they are actually tied in with the pharmaceutical industry how they receive funding from them and how they may have pharmaceutical Representatives sitting on their board of directors um I just wasn't I didn't have any idea what I was getting involved with and I think my my view on it now is just so much more cautious um and even when it comes to things like accessing therapy or c in um so because this disorder isn't widely recognized it always ends up with me

00:33:35    having to sit they're trying to educate the counselor on my experience and they're and trying to kind of Coach them into understanding what I'm going through when the point of counseling your therapy is supposed to be the other way around with them helping you make sense of your experience so one of the things that needs to happen is there needs to be like a therap itic understanding of of the experience of pssd so that there actually is like mental health talk therapy available for us um and until we

00:34:09    get Research into the physical uh biological mechanism of pssd you know that's something that can happen in the meantime maybe we can actually access uh proper counseling and like grief support for this disorder um but right now I just don't feel like the mental health system has anything they can offer because they don't understand what I'm living with until they actually know about it how can they offer anything for people living with this you've got this mental health system that's harmed you

00:34:46    refuses to recognize the harm and doesn't really have much in the way of um tools to actually help you because it it's it it can't conceptualize the problem but I guess there's also the need to look for treatments and look for help which means to some degree that sufferers have do have to engage with the system in some way do you want to tell us a bit about that a lot of it is going to come down to our approach um there are people within the pssd community that can be very adversarial towards uh the medical system as a whole

00:35:20    and particularly the the mental health system and that's completely understandable on an emotional level unfortunately what that does is it makes the the people in the mental health system the PE you know the the everyday doctors psychiatrists psychologists who presumably are there because they wanted a career helping people the vast majority of them that's that's why they're there that makes them feel defensive they feel attacked um and no one wants to engage with someone that they feel is attacking them so we really do have to

00:35:55    try and um just be honest with our stories and come at it from a position of we are not your enemy but we have a very important message that we need you to hear and that your patients need you to hear um and that needs to not just be heard on the individual level that needs to actually be incorporated into clinical practice that needs to be incorporated into the education of medical and mental health professionals that's the only way anything's going to change that's the only way that uh this is going to become

00:36:28    commonly known and that we might get um better research and eventually actually have treatment for people with this condition um it it has to be a dialogue and uh it's it's our responsibility to present that in a mature way that's not attacking individuals um but it's their responsibility to be willing to hear and actually to use um to use a bit better critical thinking because we get a lot of um well that would be in the literature if it was real without a lot of stopping to ask so how do things get

00:37:04    into the literature they get into the literature by people pointing out there's a problem saying look there's a pattern and then managing to actually get the attention of researchers and get funding into research yeah it has to be a collaborative process there's no other way yeah that just on a bit of a meta Point there's always been um particularly with the within Academia a rich tradition of critiquing institutions and uh critiquing how power structures can distort incentives uh and capture institutions capture regulatory

00:37:42    bodies and lead to outcomes which are harmful for the public good and um and often you can talk to people about these things but for some reason when you talk about it in the realm of Mental Health uh and psychiatric drugs all of that sort of critical thinking about institutional power and bias and Regulatory capture Etc just goes out the window and and any sort of critique on that level is instantly dismissed as some kind of Looney conspiracy theory I don't know if you experienced that as well absolutely and you see that a lot

00:38:23    from people who are more To the Left End of the political spectrum and I I think a lot of that is uh a lot of the positive work that's been done around ableism especially um you know mental health abolism and trying to make people feel comfortable reaching out for help um and certainly at least at the ground level lot of that is well intentioned um but again it leads to this idea that somehow we are their enemy that by Say by pointing out flaws in the system or pointing out um corruption in the system that

00:38:59    we were somehow negating the experiences of people with mental health struggles um that's that's what I think is happening on the ground level a lot you know that's where that major defensiveness is coming from at a more institutional level I think um it's probably a bit more deliberate and a bit darker because let's not forget this is uh a multi-billion dollar industry and that kind of industry doesn't come undefended so they you know they do have representatives in mental health institutions that have no incentive

00:39:34    whatsoever to allow a long-term damage from anti-depressant use to become something that's common knowledge there's there's clearly a systemic problem with psych um with iatrogenic harm I mean there's a lot of people that are harmed there's a lot of people that aren't harmed is true but there's this a significant number of people and the internet um has been crucial in in developing and and allowing people to mobilize uh and and find common course but rather rather like similar movements like the me too movement in the past um

00:40:07    where where where people who have been harmed who thought that they were the only ones suddenly could communicate with others and find that there were that there were many people like them with similar similar issues um and then to find common course and mobilize um H and I I think we've seen you know I I've spoken to people who been in this community for time and the and the transformation compared to sort of 10 years ago in terms of how active and organized the community is as a result of the connections that can be made

00:40:37    through um through the internet has been extraordinary um could you just tell tell tell us a bit about how that's manifested itself um in uh in the community in PS the pssd community I believe there is now a international organization that represents the community Etc yeah so uh the the organization that you're referencing is the pssd network um and that is a a really amazing organization that's been set up by a small group of volunteers um initially based out of Australia now spanning the whole world um and they've just done

00:41:17    incredible work in moving this forward in in getting articles into major Publications and making connections in research uh they recently announced a new re research initiative in in raising funds they've just been doing astounding work over the last several years that has accelerated um awareness and and given actual hope to our community for the first time in in decades you know there's I've had this for years there's people who have had it for 30 years um and we've gone all this time without any

00:41:53    serious representation or recognition and now that's finally changing and I just can't even begin to say how powerful that is um we owe a lot to the the pssd network um I'm in contact with with them I've I've collaborated with them in various ways before um but I anyone watching this absolutely go to their website uh pssd network.org absolutely check out their Twitter they're very active or X they're very active on X um you'll be getting all of The Cutting Edge information about pssd and pssd advocacy

00:42:27    thank you and I believe as well um so we talked a bit earlier about you know like the the incentives for uh research but I believe that the pssd network is actually is funding research itself so suff sufferers are having to fund resarch themselves is that right yeah that's true yeah um their their funds come from the community just donating out of pocket absolutely incredible um okay thank you so much Emily um just to wrap it up then um I mean this is this is an extraordinary story and I thank and I

00:43:06    thank you for your bravery and coming forward and talking about this um with us um just one last question so looking back at what has happened to you how how has your perspective changed what do you see differently compared to before all of this happened about the mental health system and and and and The Wider implication a lot of my innocence around it has just been Stripped Away like you I went into it with a lot of trust and just believing that if there were serious problems with these treatments it would

00:43:41    have been reported um the people I'm talking to are experts um and the thing is when it comes to the brain and how it works and what can impact it there's no such thing as an expert um nobody knows how these drugs work nobody knows what they do long term that research doesn't exist um and so I think I'm just I I have a huge dose of skepticism about every aspect of it that I didn't have previously um but I've also seen the power that individuals and patients have in self- advocacy and the importance of

00:44:17    that the way we improve these systems is um by telling our stories and by joining forces and actually um advocating in good faith with mental health providers and we can and will make a difference that way thank you so much Emily um well said it's it's exactly that and that's what ICI stories is about is telling our stories as we've experienced them in our own language um so that others may hear and understand um thank you once again Emily Gray it's been a pleasure having you thank you thank you Daniel

00:44:54    [Music]

Got a great story to share? We’d love to hear it. Tell My Story