"Someone might see shadow people in the corner of their room or, you know, just see things that some people would call hallucinations, see things that other people can't. Sometimes people might feel like they're being touched.
They might smell something that other people don't smell, often that might be like rotting something rotten, or taste something that might be like, people might taste like food is poisoned. And sounds, so voices can be voices or they might be sounds, so some people hear like alarm bells ringing or lots of voices talking at once, so that kind of thing, and people might have quite unusual beliefs about the world around them."
The topic for this episode is mental health and schizophrenia. If you are affected by anything we discuss, please follow up with your healthcare provider.
We talk with Alex Phillips from Mind in Camden about schizophrenia and hearing voices, focusing on lived experience rather than frightening labels. We explore how people can recover, how families can offer support, and how everyday compassion reduces stigma.
- Hearing voices as an umbrella for different sensory experiences
- Why some experiences can feel positive or meaningful
- Living well and recovery without forcing voices to disappear
- Stigma in society and responding with a compassionate human approach
- How the Hidden Disability Sunflower can signal a need for patience
If you are concerned about any of the subjects discussed in the podcast, please follow up with your healthcare practitioner for support.
For support
- Intervoice - International
- National Hearing Voices Network - UK
You can also watch the conversation on our YouTube channel.
Hosted by Chantal Boyle, Hidden Disabilities Sunflower.
Scroll down for the full transcript.
Transcript Understanding Schizophrenia with Alex Phillips
Chantal Boyle (00:19)
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 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 am going to give a quick visual description before I begin. I'm a woman
I'm 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 Phillips (01:12)
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 Boyle (01:23)
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 and her role as the Hearing Voices Project Supervisor in Mind in Camdom. So Alex, can you just begin? Let's begin with actually what is schizophrenia?
Alex Phillips (01:47)
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 very much used. And on the projects that I work on, 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 the Hearing Voices Movement itself came about actually as a result of people being written off often by services and feeling harmed by the label because it is really stigmatised diagnosis. So we tend to talk about
these experiences as kind of meaningful human responses really that 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 Boyle (03:27)
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 are the symptoms that people experience?
Alex Phillips (03:40)
So I'm going to use the term kind of hearing voices as a bit of an umbrella term, not just for voices, but visions. So people might see things that they might see 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 things that other people can't. Sometimes people might feel like they're being touched.
they might smell something that other people don't smell, often that might be like rotting something rotten, or taste something that might be like, people might taste like food is poisoned.
and sounds, so voices can be voices or they might be sounds, so some people hear like alarm bells ringing or lots of voices talking at once, 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
Chantal Boyle (04:56)
Okay.
Alex Phillips (05:09)
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 so I think there's a lot of fear around the word schizophrenia and that you know that something can be really scary and bad but a lot of people
Chantal Boyle (05:31)
Yeah, and
that is actually the case that some people have and do experience positive experiences, ⁓ positive voices or images and thoughts that can actually propel them to be in a good space.
Alex Phillips (05:42)
Yeah.
Yeah. Yeah.
Chantal Boyle (05:54)
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 Phillips (06:02)
Yeah, for 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. Yeah.
Chantal Boyle (06:28)
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 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 Phillips (06:48)
It's a bit of a mixture, so some people, I mean I guess for the person experiencing it, is real because it's happening and some people are aware that other people aren't experiencing that and some people might not be aware and maybe need quite a lot more support around their experiences.
Chantal Boyle (07:08)
What's it like
for the individual experiencing what their hearing voice is and for the family and close friends trying to support that person?
guess this taps into what you do at, at Hearing Voices Project and Mind Empoundment because do you support families and friends as well?
Alex Phillips (07:24)
Yeah.
Yeah, so we have some groups of kind of parents and people that support people that hear voices and I think for families and friends 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, we also offer training that kind of encourages people to listen without judgement and to create safe spaces to have those conversations with people or even a bit of advocacy with mental health services so that we can help people to be heard as well.
Chantal Boyle (08:11)
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 Phillips (08:34)
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 are really experienced in...
kind of supporting families. So there's one called Safely Held Spaces. There's the Satyria Network and yeah, the Hearing Voices Network, which all kind of are really great and Charmed in Manchester, which are all really great organisations
Chantal Boyle (09:05)
We should say Hearing Voices Network it's actually it's an international isn't it.
Alex Phillips (09:09)
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.
Chantal Boyle (09:20)
Thank
you. Thank you. is somebody born with, I'm saying schizophrenia because that was kind of the title of the podcast, but is somebody born with that or is it triggered? I think you mentioned about environmental factors before, or are there any global statistics about the prevalence of it?
Alex Phillips (09:37)
Yeah.
So globally, think the World Health Organisation estimates that around 23 million people live with a schizophrenia diagnosis. 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. There isn't a known single cause.
Chantal Boyle (09:50)
23 million.
Yeah.
Alex Phillips (10:04)
research suggests that it's usually a of a combination of factors including kind of genetics and trauma, stress, poverty, discrimination,
Chantal Boyle (10:12)
In terms of the age range of when people first experience 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...?
Alex Phillips (10:13)
Right?
You know what, my experience of the work that I do is that we do find very young people that have those challenges and particularly, I mean, I work with young people so I'm seeing teenagers with some of these experiences as well. I think that statistically,
mostly it tends to be people in their 20s that kind of are having these experiences and yeah onwards.
Chantal Boyle (11:01)
pain.
I know that with women, people having menopause that things can become quite difficult and challenging around that time as well with the flux in hormones. So it was, I was wondering whether, with somebody as young as 10, eight,
Do they also, yeah.
Alex Phillips (11:23)
Yeah, yeah, we have, I mean our peer support groups go from the age of 11, but we do do one-to-one support with people younger than that and their parents as well. But it's interesting that you mentioned menopause because I was looking earlier at, 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 just tells you the way that brains can work and do things.
Chantal Boyle (11:51)
Yeah, 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 of sick? It's disgusting and my family like no. So yeah that's... ⁓
Alex Phillips (12:08)
Yeah.
Yes.
Well, yes it is. 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 called 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, you know, stronger or more developed than with others.
Chantal Boyle (12:51)
Is it possible to live well with schizophrenia? I know you have your own lived experience of mental illness. Is it possible to live well?
Alex Phillips (12:59)
Yes,
I think One of the really important messages is that Recovery is possible and that doesn't always mean voices disappearing completely. A lot of people don't want that. For many people it will involve learning to understand their experiences or finding coping strategies or building supportive relationships and regaining a sense of control and meaning in life really. So lot of people do go on to live full, creative and connected
successful
lives. Some people find medication helpful, others benefit from peer support or therapy or spirituality. But yeah, the key point is that people are far more than the diagnosis and it's possible to live a good life.
Chantal Boyle (13:45)
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 Phillips (13:47)
Yes.
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 organisations as like a peer worker or kind of lived experience person and it's been really great I think to kind of feel like I can use my experience to support others. Yeah. Yeah.
Chantal Boyle (14:19)
Yeah, really rewarding.
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 other people.
Alex Phillips (14:38)
Yeah, yeah, it's really nice to have those connecting moments as well when people are like, yeah, you get it. Yeah.
Chantal Boyle (14:44)
Yes, yeah.
I mean you hear that a lot in different types of therapy don't you with addiction for A lot of 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 Phillips (15:05)
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 being members of a 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 stop people from seeking help or talking about things or feeling accepted in their communities.
Chantal Boyle (15:49)
Do you have any advice? So for example...
There was a young man a little while ago down the road and he was having a great conversation with the trees. And then I saw him another time and I think he was just sort of laying on the pavement. I 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 was to see that again, what would you say to me?
Alex Phillips (16:26)
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 maybe just 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.
Chantal Boyle (16:42)
Yeah.
Yes.
No, no, I mean,
he looked very happy. 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 this person is just having a different thought process to me at the moment? And this is the whole
Alex Phillips (16:54)
Yeah, sounds good.
Yeah.
Chantal Boyle (17:18)
reason I'm sure as you've said throughout our conversation is which is why trying to take away the label of schizophrenia as something which is frightening, dangerous to actually it's a difference of how a person's brain is working really.
Alex Phillips (17:36)
I mean I think sometimes I kind of in our training say to people like every day we meet people that have 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 you don't have to kind of
go and believe that belief as well.
Chantal Boyle (18:03)
Yeah,
I guess that brings me on to the next question, what do you think about the Hidden Disabilities Sunflowers, a method of people around you know that you have a non-visible disability such as mental illness?
Alex Phillips (18:18)
I think it can be a really valuable option for some people. I think obviously because a lot of 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 bit of patience or understanding or to slow down a bit, a bit of extra support.
Chantal Boyle (18:43)
Can you think of any instance where the Sunflower would be useful?
Alex Phillips (18:48)
I imagine maybe like in a kind of busy stressful environment if someone is feeling overwhelmed or struggling to concentrate 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 Boyle (19:10)
Is there a kind of a call to action that you would like people to have after hearing this conversation? just when they're thinking about hearing voices or schizophrenia or any of the other associated mental health diagnosis that exists?
Alex Phillips (19:30)
I think maybe just have conversations because, you know, although the World Health Organisation 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 just talk about it and be open about it yeah.
Chantal Boyle (20:02)
Yeah, I think that's such great advice because when things, was it knowledge is power? And when we don't know about certain topics, scenarios, situations, that's when 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.
Alex Phillips (20:18)
Yes.
That's it, yes.
Chantal Boyle (20:23)
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 mentioned the word stigma quite a few times.
Alex Phillips (20:29)
Yeah.
Chantal Boyle (20:39)
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? Will my neighbours give me a wide berth? That kind of thing. But you kind of need, obviously you need medical professionals for certain aspects. I mean, you just do, but.
Alex Phillips (20:46)
Yeah.
Chantal Boyle (21:05)
living in a caring and compassionate society must have a positive impact on anybody who does experience hearing voices.
Alex Phillips (21:15)
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 share your experience. it takes away some of the difficulty and fear around that.
Chantal Boyle (21:33)
We have Sunflower cards that you can have your health condition on if you so wish to. And we were having a discussion about this and we thought 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, for some, the term schizophrenia, is it a lifelong diagnosis?
Alex Phillips (22:32)
I think it's ⁓ a label it's very difficult to kind of get rid of so I think when people are given that diagnosis it tends to stick. ⁓
Chantal Boyle (22:39)
Okay, 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 Phillips (22:54)
No, I mean there are lots of people, like I'm thinking there's a psychologist in the States called Pat Deegan and when she was a teenager she was given the diagnosis of schizophrenia and 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 an diagnosis, it's, you know, I don't know what experiences she still has, but she's living a really great life.
Chantal Boyle (23:23)
That's a great story to end on, Alex, it really is. Where can people seek support and advice?
Alex Phillips (23:27)
You
So obviously, you know, thinking about GPs, mental health services, but also it's worth looking at the Hearing Voices Network website or inter-voice website 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 even have to have a diagnosis, but if you're experiencing any of those
difficulties then you can join and get some peer support. At Mind in Camden we've got Voice Collective which is a national project for young people under the age of 25 so you could get in touch with us if you're under 25 and experiencing those things and Local Minds often have a lot of support for people experiencing those things as well.
Chantal Boyle (24:21)
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.
Alex Phillips (24:43)
Thank you for inviting me.
Chantal Boyle (24:45)
So if you are affected, anyone, for anything that you have heard today during our chat, then please contact your healthcare provider. Thank you.
