Peta [00:00:00] I would like to acknowledge the traditional custodians of land and waters of which this podcast is recorded, especially to those with a disability themselves. Hello and welcome to Sunflower Conversations, a podcast where we explore the experiences of people with hidden disabilities and what the sunflower means to them. My name is Peta Hooke. I'm your host. I have cerebral palsy as well as other non visible disabilities. Every episode we're going to be chatting with a different sunflower wearer to understand what it's like for them to identify as somebody with a hidden disability and how people can best support them in different circumstances. Let's add a little bit of sunflower sunshine to your day and get started.
Alana [00:01:04] Hi, my name's Alana. I'm 23. I'm a white female with blue hair. And I wear glasses because I live with schizoaffective disorder. It's a combination of schizophrenia and bipolar disorder. I think people often see the wrong reputations on TV and media, and have a lot of stigma and belief that people who have these kind of symptoms and illnesses are dangerous, or that they're crazy and that, you know, they're just all over the place and they're not really able to communicate with others. That can be the case in some very rare situations, but for the most part, like once people are on treatment and getting support, they are able to live very full, healthy and happy lives.
Peta [00:01:55] For those who may not understand your, disability or condition, what challenges do you face? What are the most common challenges for you?
Alana [00:02:06] I experience hallucinations, which, basically means that you can see or hear things, smell things, touch things that aren't there. It's related to your five senses. So for me, I generally get what they call auditory hallucinations. So h earing voices. Visual. So I may see things that aren't there and then tactile. I get sometimes where, for an example, I may feel like there are bugs crawling in my hair or something like stabbing me. I would say the thing that's most challenging about living with this illness would be the, delusion side of it. So a delusion is a fixed and false belief that a person may have, and it's generally not very logical, and it doesn't have any evidence. For me. One of my big ones is that I think that people are able to read my mind. And this causes me a lot of distress socially, because when I try to engage in conversations, I'm constantly thinking they can hear what I'm saying, like what I'm thinking in my head. And what if I think something bad about the person? They're going to know that they're going to think I'm a bad person. Just having a lot of like, paranoid kind of thoughts around other people's intentions. And when you have voices talking to you constantly, it is so distracting you not really able to have a good, you know, like line of thought. So yeah, I would say that would be the most challenging.
Peta [00:03:48] Thank you for being so open and honest with your answer. I'm sure a lot of people now have a better understanding of what your condition is like for you, because I know it. It can be different for every person. Just because you had the same condition doesn't mean everybody experiences it the same way. So do you choose to wear the hidden disability sunflower?
Alana [00:04:11] Yes I do. I have been wearing it for a few years now. I did find out about it through social media, and I just thought it was a really great idea to have something visible that can show that you do have a disability, because I think, you know, a lot of the time, if you've got a hidden disability, people aren't aware. And I would find in social situations if I was having a manic episode, for instance, I may be acting in a way that isn't my normal self. So people, you know may be kind of thinking, why is she acting like this? That's not really her normal baseline. And I think having that lanyard, being able to go out and in society, people can look at that and then kind of just give me a bit more time, like a bit more patience. Hopefully offer some help if I need it. Or if I'm in a kind of emergency situation where something does happen and I have an episode, I find it helpful because it has my mum's contact number on it, so, you know, the person can see what I have, and then, you know, contact my mum. I've had quite a few experiences where people have recognised it, and it's just been really nice to have that kind of, I suppose, validation that you know, you do have some challenges, but you just need a little bit of extra help and then you can still achieve the things you want to achieve.
Peta [00:05:38] People who are listening might not understand how to best approach you if they say that you have a Sunflower lanyard. So do you have any advice on how people can best help you?
Alana [00:05:51] If I'm experiencing distressing hallucinations, in public, I often would need to find, like, a quiet, non crowded place. Because when you're hallucinating, you're already overwhelmed with your senses being on high alert. And you know, your brain's sending a lot of signals, and there's extra sensory input around you that can make it even more distressing. It can be very hard to know sometimes what is a hallucination of what is just the general background noise. Like if you were at a shopping centre, you know there's going to be music, there's going to be people talking, and then if you experience hallucination, you might not know which was a hallucination, which was real. I find it helpful if the person or a close friend gets me to a quieter place and just asks me like, you know what's happening? And then often I take like medication with me that I'm allowed to take if I'm really distressed. So, you know, they can remind me to take that. They can also just sit with me. I find that quite good, like, just really supportive. Just having someone there, it makes it a lot less scary.
Peta [00:07:06] When do you find it best to wear the sunflower lanyard for you? Do you wear it every day, or do you wear it when you feel or you know you're going into an environment that might be overwhelming for you?
Alana [00:07:20] Yeah, I wear it to the supermarket all the time. Like if I'm going to do shopping or groceries, I also wear it. If I am going through a social situation where I may not know the people very well, like they may just be kind of acquaintances. I think sometimes the symptoms of schizophrenia can come off a little bit unusual. So I feel like having the lanyard kind of may explain why I might not be acting, you know, in a classic, like, normal way, I suppose. And yeah, I've worn it to quite a few events like art gallery events and just different things like that. And I've had a lot of questions about it. So yeah, even going to the dentist I wear it. Yeah. Medical appointments.
Peta [00:08:08] For many people with different conditions and disabilities, the medical environment can be quite an overwhelming and anxiety inducing place, because often medical professionals seem to be the ones that don't understand our condition the most, which is quite ironic. But how does it help you when you, go to the dentist?
Alana [00:08:31] I had to go in one appointment, and I wore the lanyard. And when I got there, the nurse, the assistant actually asked me like, oh, what? What is that? So I was able to explain, like, what it was. And, you know, I said, oh, I do get really bad anxiety when leaving the house and especially going here to the dentist. And they were so good about it. They ask me all these questions. They really went out of their way to make me feel like supported and spoke to me the whole time and like just yeah, they just really cared. And they really took it into consideration. And they even wrote like a note in my file for the next time. So when, you know, I go next time, they, they have that information there.
Peta [00:09:15] So how do you feel when you wear the sunflower lanyard? Do you feel like people understand you better? Do you feel like people are generally more kind? How do you feel?
Alana [00:09:24] Yeah, I just I feel a lot more confident, I think, within myself. Because I know if I do start to struggle, it's kind of a bit of a safety net that I have the, that signals, you know, obviously to people that I may need extra help. And I think also, even if people don't know what it is when they do ask questions, it kind of breaks down that awkward like barrier of having to find someone to help you, because it can be really confronting. If you're around a bunch of strangers and you need help. And so with the lanyard, I feel like it kind of opens up the conversation of what it's like to live with a disability of what you need. And it definitely makes my anxiety and paranoia a lot less, intense. And it really helps with interacting with people.
Peta [00:10:20] That's so fantastic to hear. Absolutely fantastic. Where else would you like to see the sunflower program adopted?
Alana [00:10:29] I think it would be really cool to see it maybe rolled out in workplaces, because I've noticed with me I also have a learning disability, so that does make it a bit harder as well. And I think it would be smart if we could have that lanyard to signal to customers that you, you are capable of doing your job, that you may need some extra time, or even with your manager, you know, you may need some accessibility type thing to go on. Yeah, I also think like maybe universities, it would be good. Like if people are going to lectures and interacting with like other classmates, maybe having that lanyard would kind of give them a bit more peace of mind, like when they're having to be in social situations, because obviously a lot of mental illnesses really impact the social aspect of your life.
Peta [00:11:25] And that's another episode for Sunflower Conversations. Don't forget, you can always connect with the sunflower between episodes either via our website HD sunflower.com/au via our Facebook hidden disabilities ANZ or by Instagram hidden disabilities_ANZ. Those links will also be in the description. Thank you so much for listening. Until next time, have a lovely sunflower day.
