Dispelling Myths About Schizophrenia

In this episode, Faydra Aldridge, CEO of the British Columbia Schizophrenia Society explained how to talk more confidently about mental wellness and mental illness and gave us some ways to support a colleague at work, family member or loved one who might be experiencing a severe mental illness.

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Transcript

Speaker 1: Welcome to the Inclusive Growth Show with Toby Mildon, future proofing your business by creating a diverse workplace.

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Toby: Hello there. Thank you ever so much for tuning into this episode of the Inclusive Growth Podcast. I'm really excited to be joined by Faydra Aldridge today. Faydra is the Chief Executive Officer of British Columbia Schizophrenia Society, or BCSS for short. She's also the host of her own podcast, which is called Look Again: Mental Health Re-Examined.

Toby: I'm gonna have a really fascinating conversation today with Faydra about schizophrenia. It's a topic that I'm not familiar with at all, so I'm going to go on my own learning journey with you.

Toby: And when I did my preparation for this interview with Faydra, I did admit my own anxiety or vulnerabilities about talking about this topic because I don't want to be saying the wrong thing and I don't want to kind of stumble over my own words because I really don't know a lot about it.

Toby: So I'm actually looking forward to learning more about it and dispelling some of the myths that are out there about schizophrenia, because I've probably got a very stereotypical view on what schizophrenia is about, probably from the TV programs and the films that I've watched has largely influenced that. So it's gonna be really interesting discussion today.

Toby: Faydra, thank you firstly for joining me. It's lovely to see you.

Faydra: It's lovely to see you too, Toby, and thank you so much for the invitation. And as for questions, please don't hesitate to ask any question you would like, and it's the only way we're going to increase awareness is by asking those questions.

Toby: Brilliant. Thank you. I gave a very brief overview of your bio, Faydra. Maybe you could start off by letting us know a bit more about who you are and what you do and what led you to this point in your career? 

Faydra: Yeah. I'm happy to, Toby. As you mentioned, I am the CEO of the BC Schizophrenia Society. I have been with the organisation for about four years now. And I'll go into a little more detail about BCSS in a moment.

Faydra: But my personal journey, so I was with the Vancouver Coastal Health Research Institute before this and oversaw the stakeholder relations portfolio. And I am trained as a journalist, so I was with the Canadian Broadcasting Corporation as a morning show producer many many moons ago. And so I am trained as a journalist as well as a broadcast journalist.

Toby: That's such a small world. One of our clients is actually CBC, I didn't realise that till today. So yeah, such a small world. Yeah. Can we just start with maybe what might feel like a basic question, but what is the difference between mental health and mental illness? 

Faydra: Toby, I'm so glad you asked that question because especially during COVID, what we were finding is that mental health and mental illness were being used synonymously. And those terms are not identical.

Faydra: Mental health is something we all need to be focused on. Mental health is a state of mind. It's something that we all need to be working towards having that healthier state of mind.

Faydra: Whereas a mental illness affects a person's ability to function for a long period over time. It's an illness of the brain, and an illness impacts how a person interacts with the world. It's... You can have a mental illness and still need to focus on your mental health and vice versa.

Faydra: So it's really important that we differentiate between mental health, a mental health focus and a mental illness. People have cancer and are dealing with MS and dealing with diabetes. Those are illnesses. And schizophrenia is an illness. It just happens to be an illness of the brain.

Toby: This might be a very general question, I'm gonna ask it anyway.

Faydra: Ask away. [chuckle]

Toby: What is life like for somebody with a mental illness like schizophrenia? The reason why I'm a bit hesitant in asking that is because it's like somebody saying to me, "What is life like being a wheelchair user?" And well, it's my life. It's very unique and individual to me.

Toby: My experience of being a wheelchair user is very different to somebody else who's also a wheelchair user or even has the same disability as me. But could you maybe enlighten us about what life is like, about living with a mental illness? 

Faydra: And I'm glad you asked that, Toby. And as you mentioned, when an individual has schizophrenia, it is their life. And they do have a variety of symptoms a variety of severity, but there are some commonalities.

Faydra: So schizophrenia is a serious mental illness. It's a severe and persistent mental illness. And it affects how a person thinks, it affects how a person feels, how they behave. It involves cognitive deficits.

Faydra: And some of the most common symptoms of schizophrenia would be delusions, hallucinations, and those cognitive deficits. They think and hear things and believe things that are not in reality. It is and can be an incredibly difficult illness.

Faydra: Another piece where it's very unfortunate is that it strikes people in their late teens or their early 20s. So in the prime of their life, whether they're going to school or traveling, that affects people very young.

Faydra: And there are some negative symptoms as well. The positive symptoms would be the delusions and the hallucinations because it's being added to, or in addition to, but the negative symptoms where they're being taken away from that individual. So perhaps their inability to show emotion or they withdraw from society, they have difficulty speaking.

Faydra: And another piece with schizophrenia, you talked about myths and stereotypes, which I'd like to get into a little bit more, Toby, that you mentioned earlier, is that I think there's a perception out there that schizophrenia is as rare illness that happens somewhere out there. It's not. Schizophrenia affects one out of 100 people.

Faydra: And psychosis, which yes, that's where you have the delusions or hallucinations. So psychosis affects three out of 100. So schizophrenia, one out of 100, and psychosis, three out of 100 people. So it does affect a lot of people, and I can guarantee that almost every single one of us would either be indirectly or directly affected by this illness.

Toby: I didn't realise it was so high. And is there a spectrum of experiences? For example, could there be somebody in our life who has mild symptoms and you might not even notice some of those symptoms and maybe they're just carrying on life as normal and they've developed some really good coping mechanisms to get through the day? Is that the case? 

Faydra: If only that were the case, Toby, where coping mechanisms would be able to... Obviously coping is something, whether we have a mental illness or not is something that we all have to do within our unique worlds.

Faydra: But yes, there is a spectrum. Absolutely there is a spectrum, but the key is treatment, and that's the essential part of schizophrenia. It's getting treatment, it's getting treatment as quickly as possible, and that would involve medications as well as therapy.

Faydra: So if you or a loved one think or suspect schizophrenia or any other mental illness, it really is absolutely essential that you try and get help as early as possible.

Toby: What are some of the signs or symptoms that we should be looking out for? 

Faydra: Yeah, what we hear from the families that we work with at BCSS, they notice that their loved one, for example, their son or their daughter or their partner, where they start to withdraw. They're no longer interested in activities and things that they used to be really excited about, so they withdraw.

Faydra: Perhaps they, their sleeping patterns change, so they end up sleeping a lot more or not sleeping as much. Their showering habits, perhaps they stop showering. And so those are usually the first signs.

Faydra: There could be, drugs could also be a part of that substance use, as well as seeing some of the delusions and hallucinations playing out. And those are some of the most common aspects that or symptoms that we hear from our family members in regards to schizophrenia.

Toby: So obviously the work that I do is I work with workplaces and managers and teams, and a lot of people listening to this podcast are heads of HR and business leaders.

Toby: If we could just put ourselves in their shoes for a moment, maybe what are some of the signs or symptoms that they should be looking out for with coworkers? They might not be as familiar with their showering habits. That's what I'm thinking.

[laughter]

Toby: But, you know. Are there any kind of things that might come up within the workplace? 

Faydra: Yeah. Schizophrenia can absolutely severely affect your mental capacity for work, especially those individuals with untreated schizophrenia. So as an HR, as an employer, it's really important to talk to that person to try and get them to seek that help that we were just talking about.

Faydra: It's very difficult for people with schizophrenia to find employment and to keep employment, but if you are already, if you do have somebody that you suspect is dealing with schizophrenia or any other severe and persistent mental illness, there again, it's to really encourage them to seek help. And whether that be an employer, a friend, a family member, to talk to them.

Faydra: And another piece to keep in mind is unfortunately with schizophrenia, there's something called anosognosia. And many people with schizophrenia have anosognosia. It's a big word, but what it is, is the individual does not have the ability to recognize that they are ill and require treatment.

Faydra: So that's where we need people like those HR managers and employers and family members and friends to be able to step in to encourage them to seek treatment.

Toby: From an inclusive leadership perspective, it's really important to be really empathetic as a HR practitioner or as a leader. And I think there's a big risk that maybe somebody who is experiencing schizophrenia, they become a problem in the organisation and then they get "managed" out of the business, rather than being treated with respect and supported for what they're going through.

Faydra: Yeah. And another piece that you talked about earlier is there's a huge amount of stigma. In fact, studies show that stigma is one of the biggest barriers to people living with schizophrenia. So stigma is still a huge hurdle that we as a society have to address, as well as the many myths.

Faydra: So one of the myths that still exists with schizophrenia is that it's a split personality. And you talked before, Toby, about movies and films that you've watched, and split personality is unfortunately that is how it's presented often in movies and films, as well as violence. Their perception or myth out there.

Faydra: And people tend to want to stay away from this one. And violence is, you can't sugarcoat it. Violence can be a piece of this mental illness, but the emphasis is on untreated mental illness.

Faydra: So yes, violence can be, but the stigma or the myth that some people have and still believe is that all people with schizophrenia are automatically violent. And that can't be further from the truth. In fact, if an individual is treated, they're more, no more likely to be violent than anybody else.

Toby: Yeah. You've touched on that that violence piece. I mean, what is life like for somebody who's got a family member with schizophrenia? It must be quite difficult. I've got my own personal experience of close friends and family members having some very difficult mental health challenges themselves and it's difficult on both sides of the fence.

Toby: It's difficult for the person experiencing mental health problems. It's also difficult for family members to support those, those loved ones. But can you explain a bit more about what, what it might be like for family members? 

Faydra: Absolutely. And I'm really glad you touched on that Toby because I'm really proud of the BCSS team. So we are we... I guess we need to talk about that. We'll back up a little bit.

Faydra: So BCSS is a provincial nonprofit, so we are based out of Vancouver British Columbia in Canada. And so we do have our head office our provincial office based in Vancouver but the team is spread out across the entire province. And our sole focus is to support family members and friends of those living with a mental illness.

Faydra: So I'm really glad you touched on that, because it's not only difficult for the individual being diagnosed with schizophrenia and having that diagnosis, but also for those individuals that love and care for that person. It's very difficult. So that's why I'm so proud of the work that BCSS does and the team for supporting families with a loved one with a mental illness. So it's incredibly difficult.

Faydra: And you can imagine the the confusion where all of a sudden your son, your daughter, your partner, your mother is, has completely transformed before your eyes, where you don't know why they're, maybe they have grandiose ideas about who they are or maybe they, they've believed that people are spying on them or bugs crawling on their skin.

Faydra: There's a multitude of ways in which those delusions and illusions can play out, but it's incredibly difficult for family members to see and witness their loved one.

Faydra: Also the cognitive deficits that we talked about earlier where they perhaps have trouble of speaking or spelling and their emotions may become very flat or inappropriate. So times when you should be feeling sad at a funeral and feeling, yeah just, it's inappropriate emotions and like perhaps there would be laughter at that funeral, for example.

Faydra: So not only is it incredibly challenging for the individual to deal with a diagnosis and to seek treatment, but also for those that love and care for that individual.

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Toby: So if somebody is diagnosed with schizophrenia, how does it often impact their work? 

Faydra: Yeah.

Toby: If they are in work at the time.

Faydra: Unfortunately it severely impacts work. And a recent stat that I read is that up to 90% of people with schizophrenia want to work but only 10 to 25% can hold a job. So that's pretty, that's pretty powerful.

Faydra: And yeah, so unfortunately it does affect and I think there's a few reasons for that. I think number one, it's the symptoms that we have discussed. Number two, it's the many myths and the stigma. And I think number three, it's the lack of awareness about what schizophrenia is.

Faydra: And that's why it's so great we're doing this podcast today, Toby, because I think we need to find ways to increase awareness about what schizophrenia is and what mental illness is. And I think if we can do that, the better off we'll all be, whether we're in the employment setting or just in general society.

Toby: Yeah. 'cause in the UK we've got the Equality Act which protects us against discrimination and it covers mental illness under disability. And I do know from talking to lots of people with invisible disabilities that that could be mental health disabilities, it could be cognitive disabilities.

Toby: There's a lot of fear about disclosing their invisible condition because they think that it will impact their ability to get a job or hold onto a job if they disclose it.

Faydra: Mm-hmm.

Toby: Is that something that presumably you've come across with the clients that you work with? 

Faydra: Oh Toby, 100%. And you know what I wish, and I just truly hope that in our lifetime that we can get to a point where employers and individuals and family members can stop being afraid to say that they either have schizophrenia or know somebody or work with somebody that has schizophrenia. It is a huge barrier, Toby.

Faydra: And one of the things that I talk about all the time is, if an individual for example... I will give you an example. So as you mentioned earlier we do have a podcast and BCSS is a part of that. It's on Spotify, it's on Apple and it's, it's a well-known podcast, Look Again: Mental Illness Re-Examined.

Faydra: And there is a woman that heard the podcast, reached out, very well known name. And said, "I really want to be a part of your podcast. What can I do?" And I said, "I would love to have you on." She has a ton of followers.

Faydra: The night before, Toby, the night before we were to record the podcast, she phoned me in tears and said, "I can't do it." And it wasn't her that had the illness, it was a loved one. She said, "I will not go on your podcast. You cannot use my name because I'm afraid for my job."

Toby: Right. Wow.

Faydra: And it wasn't even her that had the illness. So it just shows the huge amount of stigma that exists where she wouldn't even go on a very public, you know, in the public realm talking about mental illness.

Faydra: Whereas as I said to her, if your loved one had Parkinson's or Type 1 diabetes or MS, you would probably be shouting it from the rooftops that you wanted to raise money, you wanted to increase awareness. You wanted everyone to be aware that your loved one had this illness and what can we as society society do about it? 

Faydra: And I said, but because it's schizophrenia and because it's this severe and persistent mental illness, you don't want to go public. And that, number one, broke my heart. But number two, I would love to see change, Toby, around that.

Faydra: And I think the only way that it's going to happen are through podcasts like this where we're talking about it, and through us as society to rather... 'Cause we tend to lean out when we hear somebody has a diagnosis. And I just look forward to the day where we as a society can start to lean in to those individuals, whether it be the individual that has the illness or those family members that are caring for that individual.

Toby: I really hope that that person reaches out to you again and says, "You know what? The time is right for us to record the episode." I really hope that that happens.

Faydra: Me too, Toby. I hope so too.

Toby: What can organisations do to support any employees that might be experiencing schizophrenia? 

Faydra: I think we have to meet people where they're at. And that is obviously going to vary person by person, but I think it's finding the right role for the right person at that point in time. And I think the employer and the employee have to be able to work together to find the right conditions.

Faydra: I also think it's finding ways for organisations to include a variety of voices. For example, if you are part of a nonprofit and you have a board, include those individuals with lived experience, include individuals that have a loved one with the illness. Or as well as the experts.

Faydra: So you're getting the experts, the personal lived experience, the family members, the employer. So you're having a cross section of voices. So it's not just that that one single voice that's coming at it through the same lens.

Faydra: Another example is if you have a public document that you are drafting, have a variety of people vet that document or be able to provide input right from the beginning as to what areas should be focused on. Or, "Maybe we should change this, maybe we should do that, because based on my personal experience here's what I would like to see included in that document," for example.

Faydra: So I think it's just, it's finding... It's finding what that individual wants and finding the best match and being able to adapt and be flexible depending on where their illness is at that time.

Toby: Yeah. You got me thinking 'cause in one of the talks I do around disability inclusion, I talk about the the medical and social model of disability. And the medical model basically says that somebody's disabled because they're broken but they need fixing somehow, that there that there needs to be an intervention.

Toby: The social model says that somebody's disabled because of barriers that are created by society. So that could be physical, it could be procedural, it could be attitudinal.

Toby: So if we take me for example being a wheelchair user, yes I've got an underlying neuromuscular disability that I was born with and I, obviously the healthcare services is really supporting me.

Toby: But actually, if I want to go and work for a company and there's steps up to the building, it's the steps that are disabling me, not the fact that I'm actually in a wheelchair. But if that company installed a lift or a ramp then I'm suddenly less disabled.

Toby: So if we kind of think about is there a way of supporting individuals with schizophrenia through that social model of disability, would you say? 

Faydra: There again so it's so individual and I think it depends on, as we said, treatment is key. And we've certainly interviewed on our podcast and certainly know of many individuals that are have gone on to be public speakers and authors and scientists, that do have schizophrenia. So I think it's the treatment is key.

Faydra: So number one, they have to be focused on their own health and their own wellness and their illness. They need to be focused on getting that treatment as quickly as possible and then finding a job that is suitable for, for them. And there again it's very individual, whatever their experiences are, their interests are, their education and what they're interested in.

Faydra: And I think it's just finding that role at the right time for where they're at on that particular day and in their journey along that mental health. Having a mental illness is is a long journey.

Faydra: And as we know whether, regardless of the illness, whether it be a physical illness or a mental illness, it can be a long journey. And so it's just finding the right role for that person at that particular time, if they are in fact able to work.

Toby: A topic that I like to discuss with my clients is around intersectionality, where you've got two identities or characteristics intersecting with one another.

Toby: So I talk very publicly about being a disabled gay man, for example, and how my experience in the world as being disabled and gay is very different to friends of mine who are disabled and straight, for example, or in a wheelchair and being a Black woman. You know, we can explore these different intersections.

Toby: So when it comes to mental illness, how does say, gender impact schizophrenia? Or other things like neurodiversity? 

Faydra: No it's a good question. So schizophrenia typically affects more men than women, but there isn't a huge difference. But it, schizophrenia will affect men younger and does tend to affect more men than women.

Faydra: But it doesn't discriminate. Schizophrenia does not discriminate. And as we said at the beginning it's not a rare illness and it does not discriminate socioeconomic status, your gender, your sexuality, ethnic background. It does not discriminate.

Toby: And is there any kind of linkages between say, neurodiversity or autism in schizophrenia? 

Faydra: It's interesting that you bring that up, that there is more and more research coming out that there is a link between autism and schizophrenia. And that children and teens with autism, that there is some research showing that there is a correlation between autism and being diagnosed with schizophrenia later on.

Toby: That's really interesting. So I think what would be good to maybe wrap up this interview with is really talking about the impact of not talking about mental illness. 'Cause it is, I think in a lot of cultures it's a difficult conversation to have. Like you say, there's a lot of stigma involved.

Toby: We're having to deal with a lot of stereotypes like you... I'm glad you said that there's a kind of stereotype of violence around schizophrenia. That's one of the ones that I was worried about when I was kind of opening the show.

Toby: So what is the impact of not talking about mental illness? And what should we be doing to counteract that? 

Faydra: Yeah. And I'm really glad and that's why I said at the beginning do not, I almost sensed that you wanted to talk about the violence piece. Because it's real, it's a real piece, Toby. So that's why I'm glad that we did address the violence.

Faydra: And just a reminder that if a person is treated, then they're no more likely to be violent than anybody else. And so I'm really glad you brought up the violence piece.

Faydra: And I think Toby, what I would like to end on is that I really hope that we can continue talking about serious mental illness, that we've become so amazing at talking about autism and depression and other illnesses and being very open about that. Prostate cancer, breast cancer. We as a society have become very open at talking about certain illnesses that perhaps were a little bit taboo before.

Faydra: And I just hope that one day schizophrenia and other severe and persistent mental illnesses like bipolar disorder, that we will be able to talk about it and talk about it very openly.

Faydra: And that we as a society will be able to lean in and wrap our arms around those individuals that have the illness, and the family members and the employers and the friends caring and loving that person, rather than leaning out.

Faydra: Because right now what happens is as soon as you say that "schizophrenia" word it, it creates something within people and that's why they tend to take that step back rather than leaning in.

Faydra: So I just truly hope, as I mentioned earlier, that in our lifetime Toby, we are all leaning into those individuals that have the illness and leaning into those individuals that are caring for those people and increasing awareness.

Faydra: And I think we're going to be able to do that through education and through podcasts like this where we continue talking about it, and being able to ask those tough questions. And maybe the questions that we may not feel comfortable asking, but we have to be able to ask those tough questions.

Toby: Yeah I'd love to see employers being really supportive. Because I think if somebody goes to work and books a meeting with HR to say, "You know what? I've just been told by my doctor that I've been diagnosed with breast cancer," for example.

Toby: I'm pretty sure that in the majority of cases the employer, like they would rally around that individual and they would support them no matter what. If they're a good employer, that is. And there would be no anxiety or fear about talking about that person's health and how to support them.

Toby: But I bet if that same individual went to HR and said, "You know what? I've just been diagnosed with schizophrenia," that suddenly, I can just see the panicked look on HR faces. They just wouldn't know where to, to begin. And they would start "managing" that individual out of the business I reckon, in a lot of cases.

Faydra: Yeah, no I agree with you Toby, and that's where I hope that... I think it depends on is that individual able to work at that time and maybe it's going on disability until they can get treatment, and then perhaps going back to their current role or...

Faydra: But it's meeting that individual where they're at at that time. And I do hope that for example if an individual is currently working and they do get a diagnosis of schizophrenia, that the employer would continue to work with that individual and that individual's family to create an environment where they are able to continue working if they're capable and if they choose, and would like and are able to continue working.

Toby: So the question that I ask everybody before they leave is, what does inclusive growth mean to you? In particular any linkage that you can make to mental illness or schizophrenia? 

Faydra: I think what inclusive growth means to me is including all voices. And every single person has and should have a voice. And whether that means you are living on the streets right now because you have untreated mental illness, whether that means you are a family member trying to get help for your loved one.

Faydra: It is meeting people where they are at and doing everything you can to rally behind that person. Because of anosognosia, if they do not recognize that they have an illness, that's where we as a society, parents, friends, siblings, employers, strangers on the street. And that's where we have to jump in and do everything we possibly can to try and get that individual the support that they need and deserve.

Faydra: So inclusive growth for me is meeting people where they're at and including people of all abilities, whether that be physical illness or a mental illness, and including people however we can, as we gave the example before about including people on boards or being a part of committees, vetting documents.

Toby: And it's including a variety of voices and essentially meeting people where they are at, at that particular time in their journey.

Toby: I think that's brilliant advice. Now, if the person listening to us right now wants to get in touch with you, maybe they want to support the work that you are doing at British Columbia Schizophrenia Society or indeed listen to your own podcast, what should they do? 

Faydra: Thanks, Toby. So our website is www.bcss.org and our podcast again is Look Again: Mental Illness Re-Examined. And we are happy to answer any questions, and hopefully there's lots of information on our website if anybody does have any questions.

Toby: Brilliant. Well, Faydra thank you ever so much for joining me on today's episode. I feel a lot more comfortable talking about mental illness than I did half an hour ago. So I think that's a big tick in the box.

[chuckle]

Toby: And hopefully the person listening to us feels a bit more confident about being able to talk about mental wellness and mental illness in their own lives, whether that's supporting a family member or loved one, or indeed supporting a colleague at work who might be experiencing a mental illness.

Faydra: Yes. Thank you Toby, and I so appreciate and I just love the fact that you are based in the UK and I am based in Canada and we are having this conversation, because this does not affect one community or one country. It affects all of us. So Toby, thank you so much for this opportunity.

Toby: And it's great that we can talk across the ocean. Thank God for modern technology that enables us to talk as if we're in the same room.

[chuckle]

Faydra: I love it.

Toby: And that's the beauty of being able to record a podcast like this and to be able to share your experiences and your wisdom with my audience.

Faydra: Oh, well thank you. And thank you for this opportunity, Toby, and for all the work that you do. Much appreciated.

Toby: You're welcome. Thank you. And thank you for tuning into this episode. Hopefully you found my conversation with Faydra today, as interesting and enlightening as I found it.

Toby: And hopefully it's given you some confidence and given you some ammo to be able to go and support any individuals in your own life who might be experiencing mental illness or mental health concerns.

Toby: So until the next time, I look forward to seeing you on the next episode of the Inclusive Growth Podcast, which will be coming up very soon. Take care.

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Speaker 1: Thank you for listening to the Inclusive Growth Show. For further information and resources from Toby and his team, head on over to our website at mildon.co.uk.