Dispelling Myths About Schizophrenia

Today’s guest is Faydra Aldridge , the Chief Executive Officer of the British Columbia Schizophrenia Society , or BCSS for short. She's also the host of her own podcast, which is called ‘Look Again: Mental Illness Re-Examined’. Our conversation is going to be about schizophrenia and it’s a topic that I'm not familiar with at all so I’ll be going on a learning journey too.

When I was preparing for this interview with Faydra, I did admit my own anxiety and vulnerabilities about talking about this topic. I don't want to be saying the wrong thing and I don't want to stumble over my own words because I really don't know a lot about it. So, I'm looking forward to learning more about schizophrenia and dispelling some of the myths that are out there. I've probably got a very stereotypical view of what schizophrenia is about. The television programmes and the films that I've watched will have largely influenced that.

To get us started I welcomed Faydra and thanked her for joining me. I invited her to tell me a bit more about herself and what had led to this point in her career.

‘As mentioned in the introduction, I am the CEO of the BC Schizophrenia Society and I have been with the organisation for about four years now. I'll go into a little more detail about BCSS in a moment, but my personal journey before that was with the Vancouver Coastal Health Research Institute where I oversaw the stakeholder relations portfolio. I am trained as a journalist as well as a broadcast journalist, so I was with the Canadian Broadcasting Corporation as a morning show producer many moons ago.’

I asked Faydra if we could cover what might seem like a basic question but would be helpful to know from the off and that is, ‘What is the difference between mental health and mental illness?’

‘I'm so glad to be asked that question because especially during COVID, what we were finding is that mental health and mental illness were being used synonymously. Those terms are not identical. 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. 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. You can have a mental illness and still need to focus on your mental health and vice versa.

So, it's 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.’

I was keen to learn from Faydra what life might be like for somebody with a mental illness such as schizophrenia. I felt a bit hesitant in asking this since it’s like somebody saying to me, ‘What is life like being a wheelchair user?’ And the answer is, ‘Well, it's my life. It's unique and individual to me.’

So, 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. I asked Faydra to enlighten us about what life is like when living with a mental illness.

‘When an individual has schizophrenia, it is their life. And they do have a variety of symptoms and a variety of severities, but there are some commonalities.

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. Some of the most common symptoms of schizophrenia would be delusions, hallucinations, and cognitive deficits. People think and hear things and believe things that are not in reality. It is and can be an incredibly difficult illness.

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 travelling, that affects people who are very young.

And there are some negative symptoms as well. The positive symptoms would be delusions and hallucinations because it's being added to, or in addition to, but the negative symptoms are 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.

Another piece with schizophrenia is the myths and stereotypes, which I'd like to get into a little bit more. I think there's a perception out there that schizophrenia is a rare illness that happens somewhere out there. It's not. Schizophrenia affects one out of one hundred people. And psychosis, when someone has delusions or hallucinations, affects three out of one hundred 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.’

I certainly didn't realise the prevalence was so high. I asked Faydra, ‘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 replied, ‘If only that were the case. Obviously coping is something, whether we have a mental illness or not is something that we all have to do within our unique worlds. 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 as quickly as possible, and that would involve medications as well as therapy.

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

I asked, ‘So what are some of the signs or symptoms that people should be looking out for?’

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

Their sleeping patterns might change, so they end up sleeping a lot more or not sleeping as much. Their showering habits alter, or they may stop showering. And so those are usually the first signs.

There could be substance use involved, as well as seeing some of the delusions and hallucinations playing out. Those are some of the most common aspects or symptoms that we hear from our family members with regard to schizophrenia.’

The work I do is with workplaces and managers and teams. A lot of the podcast audience is heads of HR and business leaders. I asked Faydra, ‘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. So are there different kinds of things that might come up within the workplace?’

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

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

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. 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 the person to seek treatment.’

From an inclusive leadership perspective, it's so important to be empathetic, whether as an HR practitioner or as a leader. I think there's a big risk that somebody who is experiencing schizophrenia could 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 agreed. ‘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.

One of the myths that still exists about schizophrenia is that it's a split personality. That’s how schizophrenia is unfortunately often presented in movies and films. People tend to want to stay away from this one but you can't sugarcoat it. Violence can be a piece of this mental illness, but the emphasis is on untreated mental illness. 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 no more likely to be violent than anybody else.’

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. It's difficult for the person experiencing mental health problems. It's also difficult for family members to support those loved ones. I wondered if Faydra could explain a bit more about what it might be like for family members.

BCSS has a sole focus which is to support family members and friends of those living with a mental illness. We are a provincial nonprofit, based in Vancouver, British Columbia, in Canada, but the team is spread out across the entire province.

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.

You can imagine the confusion. All of a sudden your son, your daughter, your partner, your mother has completely transformed before your eyes. Where you don't know why they are having maybe grandiose ideas about who they are, or they believe that people are spying on them or there are bugs crawling on their skin.

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 in their loved one.

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

My next question was, ‘If someone is in employment when they are diagnosed with schizophrenia, how does it impact their work?’

‘Unfortunately, it severely impacts work. 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. That's pretty powerful. I think there are a few reasons for that statistic. Number one, it's because of the symptoms that we have discussed. Number two, it's the many myths and the stigma. And number three, it's the lack of awareness about what schizophrenia is.

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

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, which could be mental health disabilities or cognitive disabilities, 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 replied, ‘I wish, and I just truly hope that in our lifetime 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 at the moment.

In the Look Again: Mental Illness Re-Examined podcast which BCSS is a part of, a very well-known woman heard an episode on Spotify, or on Apple and reached out and said, "I really want to be a part of your podcast. What can I do?" So I said, "I would love to have you on." She has a ton of followers. The night before we were due 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."

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 into the public realm to talk about mental illness. 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 and you wanted to increase awareness. You wanted everyone to be aware that your loved one had this illness and ask what can we as a society do about it. But because it's schizophrenia and because it's this severe and persistent mental illness, you don't want to go public.”

Number one, that broke my heart. But number two, I would love to see change. I think the only way that it's going to happen is through podcasts like this where we're talking about it, and through us as a society to lean in. Because we tend to lean out when we hear somebody has a diagnosis. I look forward to the day when 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.’

Personally, I hope that the person Faydra mentioned reaches out to her again in the future to say, "You know what? The time is right for us to record the episode." I really hope that that happens. But in the meantime, I wanted to know what organisations can do to support any employees that might be experiencing schizophrenia.

‘I think we have to meet people where they're at. Obviously, that’s going to vary person by person, but I think it's finding the right role for the 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.

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 as well as the experts.

By getting the experts, the personal lived experience, the family members, and the employers you have a cross-section of voices. It's not just that single voice that's coming at it through the same lens.

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. So I think it's about 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.’

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

So, if we take me for example being a wheelchair user, I've got an underlying neuromuscular disability that I was born with and obviously the healthcare services are really supporting me. But if I want to go and work for a company and there are 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.

I was curious to understand if there is a way of supporting individuals with schizophrenia through the social model of disability.

‘It's so individual. treatment We've certainly interviewed on our podcast and know of many individuals that have gone on to be public speakers and authors and scientists, that do have schizophrenia. But I think it's the treatment that is key. They have to be focused on their own health and wellness as well as their illness. They need to be focused on getting that treatment as quickly as possible and then finding a job that is suitable for them. It's very individual, whatever their experiences and interests are. 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 a long journey.

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

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.

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.

I asked Faydra, ‘When it comes to mental illness, how does say, gender impact schizophrenia? And are there any links between say, neurodiversity or autism in schizophrenia?’

‘Good question. Schizophrenia will affect men younger and does tend to affect more men than women although there isn’t a huge difference. Schizophrenia does not discriminate. As I said at the start, it's not a rare illness and it does not discriminate against socioeconomic status, gender, sexuality, or ethnic background. It does not discriminate. There is also some research showing that there is a correlation between autism and being diagnosed with schizophrenia later on.’

I think it would be good to wrap up this interview by talking about the impact of not talking about mental illness. I think in a lot of cultures it's a difficult conversation to have because of the stigma involved. I suppose people have to deal with a lot of stereotypes in those conversations, like the stereotype about violence and schizophrenia. I want to know more about what the impact of not talking about mental illness is and what should we be doing to counteract that.

‘So just a reminder that if a person is treated, then they're no more likely to be violent than anybody else. And I'm really glad we’ve brought up the violence piece. What I would like to end on is that I really hope that we can continue talking about serious mental illness. 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.

I just hope that one day we will be able to talk very openly about schizophrenia and other severe and persistent mental illnesses like bipolar disorder. And that as a society we 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.

What happens now 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. I just truly hope, as I mentioned earlier, that in my lifetime 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.

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 are able to ask those tough questions. Maybe asking these questions that we may not feel comfortable asking, but we have to be able to ask those tough questions.’

I'd love to see employers being really supportive. 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, I'm pretty sure that in the majority of cases the employer 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.

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

Faydra agreed adding, ‘Maybe it's about going on disability until they can get treatment, and then perhaps going back to their current role or the employer meeting that individual where they're at. I hope that if an individual is currently working and they do get a diagnosis of schizophrenia, 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 would like and are able to continue working.’

We had come to the part of the show where I ask everyone the same question which is, ‘What does inclusive growth mean to you?’

‘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. It is meeting people where they are at and doing everything you can to rally behind that person.

Because of anosognosia, if someone does not recognise that they have an illness, that's where we as a society, parents, friends, siblings, employers, and even strangers on the street have to jump in and do everything we possibly can to try and get that individual the support that they need and deserve.

It’s about including people however we can, such as having people on boards or being a part of committees and vetting documents. So, inclusive growth for me is meeting people where they're at and including people of all abilities, whether that be physical illness or mental illness.’

To get in touch with Faydra, or to support the work British Columbia Schizophrenia Society visit their website where there's lots more information. On the site you can also get the links to listen to the podcast Look Again: Mental Illness Re-Examined.

Alternatively, if you’d like to discuss tailored support for your organisation’s diversity and inclusion journey, then please do reach out to the team at Mildon through their website.