Chantal 0:20

Hello and welcome to the Sunflower Conversations. I am your host and my name is Chantal. Before we start the interview, I want to issue a content warning. The topic

Welcome, Content Warning, Access Needs

Chantal 0:30

for this episode is about mental health and schizophrenia. If you're affected by anything that we discuss, please follow up with your healthcare provider or practitioner. So thank you. I'm going to give a quick visual description before I begin. I am a woman. I have brown skin, long brown curly hair. I'm in my midlife. I'm wearing a white sunflower supporter lanyard and I've got a pale pink t-shirt top on. And joining me today to discuss this very important topic is Alex Phillips. So Alex, can you just give a quick visual description of yourself just to support accessibility for anyone who's got a visual impairment?

Alex 1:12

Yeah, of course. I am a white woman in my late 30s with long brown hair. I'm wearing a black t-shirt with a white shirt on top, and I've got a white background with a picture behind me.

Chantal 1:24

That's lovely. Thank you. So as I mentioned in the intro, our discussion is about schizophrenia. And Alex has a wealth of experience from her own lived experience of mental illness

What Schizophrenia Means Today

Chantal 1:35

and her role as the Hearing the Voices project supervisor in Mind in Camden. So Alex, can you just begin? Let's begin with actually what is schizophrenia?

Alex 1:48

So schizophrenia is a psychiatric diagnosis or label that is used to describe a range of experiences. So that includes hearing voices and seeing things that other people might not see, maybe feeling paranoid or fearful, having some unusual beliefs or struggling with confusing thoughts and emotions. There's generally been a bit of a move away from using that diagnosis and label recently with people more likely to be diagnosed with psychotic illness, but it's still it's still very much used. So we're part of the Hearing Voices Network, which is born from the Hearing Voices movement that came about in the 80s. And from the perspective of the Hearing Voices movement, we kind of try to focus less on the diagnosis and on the label and more on the person's actual lived experience, because many people who hear voices or have been given that label don't really identify with the term schizophrenia. And that the Hearing Voices movement itself came about actually as a result of people being written off often by um services and feeling harmed by the label because it is really stigmatized diagnosis. So we tend to talk about these experiences as kind of meaning hum meaningful human responses really that are connected to maybe trauma, stress, grief, neurodivergence, isolation, you know, overwhelming life events. And they're often also really connected to cultural or spiritual beliefs. So we try to focus more on the meaning behind the experiences.

Chantal 3:28

Thank you. So that's really interesting. And then you did touch on some of the symptoms, but can we just go back to them? So what what are the symptoms that people experience?

Alex 3:41

Um, so I'm gonna use the term kind of hearing voices as

Voices, Visions, And Other Senses

Alex 3:45

a bit of an umbrella term, not just for voices, but thing vision. People might see, you know, things that that um they might see people things that other people can't see. So something commonly is sort of, you know, someone might see shadow people in the corner of their room, or, you know, just see things that some people would call hallucinations, see people things that other people can't. Um sometimes people might feel like they're being touched, they might smell, smell something that other people don't smell. So often that would be kind of might be like rotting something rotten, or taste something that might be like people might taste like food is poisoned, and sound. So voices can be voices, or they might be sound. So lot some people hear like alarm bells ringing or lots of voices talking at once, uh, so that kind of thing. And people might have quite unusual beliefs about the world around them. So yeah, and these are all things that aren't shared by another person, or you know, sometimes beliefs can be shared, but they're also still maybe what we wouldn't think of as sort of consensus reality. So we tend to describe them as experiences rather than symptoms, because the experiences aren't necessarily people don't always think of them as a sign of illness. But for the individual, they can be really frightening and confusing and isolating and overwhelming, but actually sometimes really joyful and positive. And you know, if you're quite isolated, then maybe having hearing voices, you might have some company, you know, if they're kind of positive voices. It's not always a negative thing, or it might they might be encouraging or motivating. Um, so I think there's a lot of fear around the word schizophrenia and that, you know, that something can be really scary.

Chantal 5:34

And is actually that is actually the case that some people have and do experience positive experience, experience, experience. Positive voices or images um and thoughts that can actually propel them to be in a good space.

Alex 5:53

Yeah.

Chantal 5:54

Because are there people that sometimes feel, well, I actually quite like this element of who I am and I don't want to change it.

Alex 6:02

Yeah. For some some people they kind of they don't want that to go away. You know, I guess sometimes the hard part of it is maybe the feelings that come up around feeling maybe different or not being understood. But actually the experience themselves, it isn't always a bad thing. You know, obviously it can be really scary, but yeah, sometimes people just people don't that's part of who someone is and they don't want that to go away.

unknown 6:28

Yeah.

Chantal 6:28

And when somebody is hearing voices, we use that term, whatever that might manifest itself as, do they realise that what is going on, that what's happening, or does it just feel so real they don't understand that other people can't see it or other people can't hear it, or feel it, or smell it, or taste it?

Alex 6:48

It's a bit of a a mixture. So some people, I mean, I guess for the person experiencing it,

What Feels Real In The Moment

Alex 6:55

it is real because it's happening. And some people are aware that other people aren't experiencing that, and and some people might not be aware and maybe need quite a lot more support around their experiences.

Chantal 7:08

What's it like for the individual experiencing the what the hearing voices and for the family and close friends trying to support that person? I guess this taps into what you do at Hearing Voices project and and mind and fund and because do you support families and friends as well?

Alex 7:30

Yeah, so we have some groups of kind of parents and and people that support people that hear voices. And I think for families and friends, it it can be incredibly difficult because people often want to help but just don't know how and they can feel quite frightened or helpless. And I think sometimes people are quite shut out of people's lives. And yeah, I guess so we offer support groups, but we also offer training that kind of encourages people to listen without judgment and to create safe spaces to have those conversations with people, or even a like a bit of advocacy with mental health services, so that we can help people to be heard as well.

Chantal 8:11

So, would you recommend for friends and family who are close to somebody who is hearing voices or hears voices that they do seek support from organisations, charities such as yourselves? Is it very difficult to navigate on your own without that outside professional experience?

Alex 8:35

I think some people have better success than others. And I think like, you know, some people are fighting for a really long time to get support for their loved ones, but there are a lot of organisations out there that that are really experienced in kind of supporting families. So there's one called Safely Held Spaces, there's the Sateria Network, and yeah, the Hearing Voices Network, um, which all kind of are really great and charmed in Manchester, which are all really great organisations. And we should say Hearing Voices Network, it's actually it's an international isn't. But yeah, there's Intervoice, which is the kind of international Hearing Voices Network, and you can Google those and find groups and support and resources all over the world. Thank you.

Chantal 9:21

Thank you. Is somebody born with I'm I'm saying schizophrenia because that was kind of the title of the of the podcast, but is somebody born with that or is it triggered? I think you mentioned about environmental factors before. Are there any global statistics about the prevalence of it?

Alex 9:41

So globally, I think the World Health Organization estimates that around 23 million people live with a schizophrenia diagnosis.

How Families Can Offer Support

Alex 9:50

Um 23 million. 23 million around the world. So actually that's not that many in comparison to how many, you know, billions of people we have in the world. And there isn't a known single cause. Research suggests that it's usually a kind of a combination of factors, including kind of genetics and trauma, stress, poverty, discrimination.

Chantal 10:13

In terms of the age range of when people first experienced hearing voices, is there a certain age? Does it happen in pre-hormonal young people? Does it happen a lot around that kind of surge of hormones or you know what?

Alex 10:35

I I my experience of the work that I do is that we do find very young people that have those challenges and and like particularly I mean I I work with young people, so I I'm seeing teenagers um with some of these experiences well. But I think that statistically mostly it tends to be people in their twenties and that kind of are having these experiences and yeah, onwards.

Chantal 11:02

I know that with um women, people having menopause, that um that things can become quite difficult and challenging around that time as well with the flux in in hormones. So it was I was wondering whether I would somebody as young as 10, 8, do they also, yeah.

Alex 11:24

Yeah, yeah. So we have I mean our our peer support groups go from the age of 11, but we do do one-to-one support with people younger than that, um, and their parents as well. But it's interesting that you mentioned menopause because I was looking earlier at um was something around perimenopause. And one of the symptoms of that is often being able to smell smoke that isn't there. So even that as an experience um just tells you the way that brains can work.

Chantal 11:53

Well, my hormones are a little bit out of kilter because I'm perimenopausal and I have been taking like HRT, etc. And then I think they've gone a little bit on the wonk again because I have been able to smell something. And for like about a week, I keep saying, Do I smell? Do I smell? Do I smell of sick? Do I smell the smell of sick? Disgusting. And uh my family like no. So yeah, that's uh I guess.

Alex 12:21

Well that's you smell and like I think a lot of people will have had the experience of hearing their phone going off and it isn't, or you know, having their name calls and there's no one there. And that's kind of you know, just our minds do this naturally, but for some people maybe it's it's you know, stronger or more developed than with others.

Chantal 12:44

You are listening to the Sunflower Conversations with Chantal. To learn more about the sunflower, visit our website. Details are in the show notes. Is it possible to live well with schizophrenia?

Causes, Prevalence, And Life Stages

Chantal 12:55

I know you have your own lived experience of mental illness. Is it possible to live well?

Alex 13:01

Yeah, so I think one of the really important messages is that kind of recovery is possible and that doesn't always mean voices disappearing completely. A lot of people don't want that. Um for my many people it will involve kind of learning to understand their experiences or finding coping strategies or building supportive relationships and kind of regaining a sense of control and meaning in life, really. So a lot of people kind of do go on to live full, creative, and connected, successful lives. Um, some people find medication helpful, other benefits others benefit from peer support or therapy or spirituality. Um, but yeah, the key point is that people are far more than the diagnosis and and it's possible to live a good life.

Chantal 13:47

Do you mind if I ask you a personal question? You can say no. Is that what from your own lived experience, is that why you've got the career path that you have taken working in this space?

Alex 13:59

Yeah, so I've kind of worked, I've had my own difficulties in my mental health, and I've worked for quite a lot of organizations as like a peer worker or kind of lived experienced person, and and it's been really great, I think, to kind of feel like I can use my experience to support others.

Chantal 14:21

Yeah, really rewarding. Yeah. It's it's such a great thing when you can turn an experience that might not have been your happiest into something which actually drives passion and reward and you can see a direct benefit for for other people.

Alex 14:40

Yeah, yeah. It's really nice to have those connecting moments as well when people are like, oh yeah, you get it.

Chantal 14:46

Yes, yeah. I mean you hear that a lot in different types of therapy, don't you? With addiction, for example. A lot of the the really great support workers are those who have walked that road and are doing the steps, etc. What do you think the perception of mental illness is like in our society today?

Alex 15:07

I think that in terms of mental health, people have become a lot more open in recent years, but I think that there is still a long way to go. There's still a lot of stigma around, particularly experiences like hearing voices. And I think that there are some really unfair stereotypes that people are dangerous or incapable of of you know being members of community when in reality most people are more likely to be quite vulnerable themselves. And that stigma I think can really be very isolating and and stop people from seeking help or talking about things or feeling accepted in their communities.

Chantal 15:51

Do you have any advice? So, for example, there was a young man uh a little while ago down the road and he was having a great conversation with the trees, and and then I saw him another time and I think he was just sort of laying on the pavement. I

Recovery And Living Well

Chantal 16:10

didn't know whether there was any action that I should be taking in this scenario. I certainly didn't feel confident to speak to that young man. And what would you if I w was I was to see that again, what would you say to me?

Alex 16:28

Um I think I guess I just encourage like a compassionate human approach, kind of one that recognises distress maybe as part of a human experience rather than something that automatically makes a person kind of other. Yeah. Yeah, maybe just I I think it's so difficult in these situations because you know, when it's a stranger, you just don't know what you're getting, do you? Sometimes he looked very happy.

Chantal 16:56

Yeah. But the perception can be if somebody isn't behaving in exactly the same way as I am behaving, is that something that is threatening, or is it something is this person is just having a different thought process to me at the moment?

Alex 17:16

Yeah.

Chantal 17:17

And this is the whole reason I'm sure, as you've said throughout the our conversation, is which is why trying to take away the label of schizophrenia or something which is frightening, dangerous, to actually, it's the difference of how a person's brain is is working, really.

Alex 17:38

I mean, I I think sometimes I we kind of in our training say to people, like every day we meet people that have different different beliefs to ourselves or different ways of seeing the world, and we manage to have conversations and find ways through, even though we maybe have very different perspectives. And it's not really that different, you know. You can kind of someone else can hold a belief that you don't have to hold, and you don't have to kind of go and believe that belief as well. Yeah.

Chantal 18:07

Um, I guess that brings me on to the next question. But what do you think about the hidden disability sunflower as a method of people around you know that you have a non-visible disability, such as mental illness?

Alex 18:20

I think it can be a really valuable option for some people. I think obviously because a lot of um disabilities and mental health challenges aren't visible. And I guess if someone's experiencing anxiety or overwhelm or hearing voices, the sunflower could signal that they might need a bit of patience or understanding or to slow down a bit, a bit of extra a bit of Can you think of any instance where the sunflower would be useful? I imagine maybe like in a kind of busy, stressful environment, if someone is feeling

Stigma, Stereotypes, And Compassion

Alex 18:55

overwhelmed or struggling to concentrate or or communicate, then maybe it could kind of signal that maybe people needed a bit of patience and understanding and that could reduce a bit of pressure just to help people explain themselves.

Chantal 19:12

Is there a kind of a call to action that you would like people to have after hearing this conversation?

Alex 19:32

I think maybe just have conversations because, you know, although the World Health Organization says only 23 million people are diagnosed with schizophrenia, whenever I talk to people about hearing voices, most people will say, I've had that experience, or I know someone else who has had that experience. And so it's a very common human experience. And I think if we just talk about it more, it takes away some of the fear and the stigma and the shame around it. So just talk about it and be open about it.

Chantal 20:03

Yeah. Yeah, I think that's such great advice because when things is was it knowledge is power, and when we don't know about certain topics, scenarios, situations, that's when you things can become out of, you know, out of control really in your mind. You know, you're filling in you're filling the gaps to a story that you don't know anything about. I think because people feel that they're putting themselves in a vulnerable position, don't they, to say, I need some help. I don't think that I'm feeling well mentally. And because of you've mentioned the word stigma quite a few times, because of that, we're so worried about how others will perceive us. Will that have an impact on my job? What will my colleagues think of me? You know, will my neighbours give me a wide birth? That kind of thing. But you kind of need obviously you need medical professionals for certain certain aspects. I mean, you just do. But living in a sort of caring and compassionate society

The Hidden Disability Sunflower Option

Chantal 21:10

must have a positive impact on anybody who does experience hearing voices.

Alex 21:17

Yeah, I think just knowing that, you know, if people are talking about it more, that maybe there's someone that you can trust that won't be, you know, that won't sort of be horrified if you you share your experience, yeah, takes away some of the difficulty and fear around that.

Chantal 21:35

We have sunflower cards um that you can have your health condition on if you so wish to. And we were having a discussion about this, and we felt that maybe for anybody who does experience poor mental health at any time, because it might not be something that would last forever, it might be a certain period in your life, that maybe the sunflower extra card that we've got would be much more appropriate because it Doesn't have anything on the front apart from it's got the sunflower, but you can create your own digital profile so you know that you could maybe just tap it on your phone on your device and show it to somebody discreetly so they can read what kind of support you might need and some of the challenges that you face. So that would be a really nice accompaniment for somebody who is experiencing poor mental health. Can I just quickly ask you? So for some the term schizophrenia, is it a lifelong diagnosis?

Alex 22:33

I think it's a label uh label that's very difficult to kind of get rid of. So I I think when people are given that diagnosis, it tends to stick. Okay.

Chantal 22:42

But you wouldn't necessarily have, you could just have schizophrenia or hearing voices for a portion of your life. It might not be something that means that I've been diagnosed with it at 20 and that's it for the rest of my life.

Alex 22:55

No, I mean there are lots of people, like I'm thinking there's a a psychologist in the States called Pat Deegan, and when she was a teenager, she was given the diagnosis of schizophrenia, and she she's now a psychologist in the States and kind of helps other people to recover on their own terms as well. And I think I don't know whether she still identifies with that as undiagnosis. It's you know, I don't know what experiences she still has, but she's living a really great life.

Chantal 23:25

That's a great story to end on, Alex. It really is. Where can people seek support and advice?

Alex 23:34

So obviously, you know, thinking about GPs, mental health services, but also it's worth looking at the Hearing Voices Network um website or InterVoice website, um, if you're not in England, because you know, there are lots of Hearing Voices groups everywhere that people can just join. You don't have to, you don't

Where To Get Help And Closing

Alex 23:55

even have to have a diagnosis, but if you're experiencing any of those difficulties, then then you can join and get some peer support. I mean, at Mind in Camden, we've got Voice Collective, which is a national project for young people under the age of 25. Um, so you could get in touch with us if you're under 25 and experiencing those things. Um, and local minds often have a lot of support um for people experiencing those those things as well.

Chantal 24:22

Yeah. Well, this has been absolutely fantastic. Thank you so much for your time. I really genuinely appreciate it. And it's been really great to get more of an insight into mental illness and understanding a little bit more about what it is and how we can all support one another. So thank you. Thank you for inviting me. So if you are affected, anyone for anything that you have heard today during our chat, then please contact your healthcare provider. Thank you. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non visible disabilities and the hidden disability sunflower. You can also follow and subscribe to the Sunflower Conversations podcast.