Loneliness and Disability
Ali
We are Lonely is recorded across a number of Aboriginal lands including the Eora Nations and the Kulin nations of the Gadigal people. We would like to pay our respects to the Elders and custodians of these lands. We would also like to pay our respects to the custodians of the land on which you are now listening.
Rhiannon
It's like, I just feel like I need to go up to people. Like when you're a kid in this playground and like, hey, do you wanna play together or hey, do you wanna be friends? Like.
Tessa
But that's exactly it. If there's something that happens to us as adults, or we start to think that we're, we're just not supposed to pursue friendship anymore. And the reality is that it doesn't change actually the same principles apply whether you're a kid five years old, on the playground, or whether you're an adult. You know, we have to pursue friendships and we have to be vulnerable.
Ali
This is We Are Lonely and I'm Ali Walker. This podcast is part of Medibank's 10 Year initiative to combat loneliness. Today’s episode is about how to navigate changes and challenges in relationships. It’s also about how living with a disability can increase our chances of feeling isolated. You might recognise today’s mentor.
Tessa
So, I’m Tessa and I'm a councillor and prior to sort of setting up my own private practise in counselling, I worked a lot in the space of loneliness. And so, I've spent a lot of time listening to people's stories and also, I've had my own experience with loneliness. So, it's something that I feel is a really important thing to demystify because it is just, it's normal for us all feel it sometimes, and I think the issue is when we don't talk about it, that's when it gets so big. And bigger than any of us can really handle.
Ali
Tessa was one of our mentors in Season 2. If you haven’t had a chance to listen yet, I’d really recommend checking it out. Friendships can change dramatically in our twenties, and while we might gain new people, we also lose a lot of friends in these years. It’s a time when life is changing so much that we can lose sight of who to hold on to and who to let go of. Some of these friendships end because letting go of a friend can sometimes feel easier than facing a confrontation. Rhiannon and Tessa will be working through these issues today, but in a backdrop of also living with a physical disability. This is important to bring to the front because living with a disability has a tangible impact on loneliness. And this is borne out in the research, 61 percent of people living with a disability experience loneliness at least one day a week.
Tessa
This is such a large population and yet maybe they're not necessarily getting as much of a space to be able to, you know, talk from their point of view around what that experience is like, I think as well, my own experience of finding out that I've got a diagnosis of endometriosis and what that has been like for me. That experience is isolating in many ways the journey of getting that diagnosis, but also in the experience of, you know, it's like a couple of weeks out of a month that I feel like I have to operate very differently from how I'm actually feeling.
Ali
It's interesting when we speak about disability at such a broad term. My sense is that people jump to physical or observable disability, but it's so much broader than that, isn't it?
Tessa
Absolutely, and that's exactly it, particularly with, you know, Rihanna story, who we're about to hear and with my own experience of endometriosis, it's invisible. You know, you can't actually see that, and especially when you know, got a young person in Rhiannon's case. Who? Yeah, we can create a lot of preconceived ideas around sort of, you know, who she is and what she should be able to do. And actually, the reality is that so many of us live with invisible disabilities or invisible illnesses, and to be able to create some kind of element of that being seen feels important to help to build our collective empathy in this space. And honestly, it feels like that collective empathy is is exactly what we need to be building greater connection for all of us.
Ali
That's so powerful, I'll let you go and meet Rhiannon.
Rhiannon
So, I'm Rhiannon. I use she/ her pronouns. I'm a project officer and work in the activism space. Loneliness is something, yeah, as a human element of life. And yeah, I've always had different periods where it um rings stronger than usual and sometimes where I don't feel lonely. Yeah, and it's definitely something you notice more as an adult, especially when you're not in school settings anymore surrounded by people. But since going through my own health journey and disability journey, the last four years, it's something that's become more apparent in my life.
Tessa
Yeah, yeah, yeah. Do you want to share a little bit more about your experience of that and how it relates or how it's related to loneliness for you?
Rhiannon
So, it was the night before my 21st birthday. We were in lockdown and I went for a walk with my sister and I came back and I walked up the stairs and I went to take a step towards my room and I was like, oh something doesn't feel right, and then all of a sudden my back seized up and I couldn't walk. And that was really scary. But then that kind of went away and I didn't really think about it too much. And then as time went on, I started noticing more and more I was getting more pain and it was just a bit odd and my physio straight away, he knew there was like something further going on and then took like over a year of tests to figure out what was going on. And my physio had guessed it right from the beginning. I have arthritis in my hips, and it's called campfire hip. So, it's like extra bone growth on your hips. So, the only people I knew with osteoarthritis are my grandparents and elderly people. Um, so I started feeling really lonely. But then as the years have gone on and have delved more into my health, they've realised it could be related to like autoimmune disease. And there's all these underlying things. Um so it feels like the deeper you go into your health journey, the lonelier you get. It's kind of almost like a fixation at this point. Like I get really fixated on learning and understanding what's led to this health um problem, whether it's genetics, lifestyle. It's also so lonely because I don't know a single person around me who has what I have. So, I just sort of started talking very openly on my Instagram stories. Um just, you know it's all my friends that follow me, but even just talking out loud and just posting it and putting it out into the world made me feel better that I was talking about it and then through doing that, all these people were in my life that I had no idea were also disabled or suffering from chronic illness or chronic pain, you know, were replying to my stories and like, oh, I have that too, like blah blah blah. And that's like interesting because that's the part of me that makes me feel so alone. But it's also the part that makes me feel connected to people deeply.
Tessa
It sounds like you've been able to find a way in some regard to be able to, to use it as a way to, to connect like you've turned it around in some way. It sounds like there was definitely a time in your life and maybe still is, where like it still fuels that feeling of loneliness, because even if we're sharing with others. There's something about, you know, feeling like no one really understands really.
Rhiannon
Yeah, I mean, especially like when you're in lots of doctors waiting rooms as well and you're the only person in there. That doesn't have grey hair. It can be very like, oh, crap, that's right I'm in this very specific area where I don't see anyone like me. I think I feel it a lot when you know the idea of, like, FOMO. But it's like FOMO times 100 when you're bedridden and you really can't go. Also, you know, through making it known, and it is such a big part of my identity, then people are unsure “well, we won't invite Rhiannon because she won't be able to do this” or like you know, and it sort of creates a drift between your friends as well, like. And they're not like consciously doing it and aware of that. But you know, be like, “Oh well, we know that Rhiannon can't do this. So, we'll just like not invite her.” And I think as well because I lived 20 years of my life not being disabled then becoming disabled and identifying as disabled. It's really hard to adjust to that because I'm used to a life where I know what life is like, where you can just last minute, do things that I think the way that I usually deal with things, and I've always dealt with things is to withdraw and isolate myself. So then when you're dealing with that feeling of, oh, I'm left out of things and the way you deal with it is by further isolating yourself, it doesn't create a healthy coping mechanism. It’s hard not to fall into like negativity with it and like, be a bit of a pessimist with it. And I think the biggest isolating thing for me. I start to become someone I never thought I'd be like. Very cranky. No one wants to talk about like, I'm feeling negative towards my friends because they all get to hang out and I don't or whatever like, cause then you just sound like a shit friend and everyone wants to sound like that. So, I think that's why it hasn't been talked about and I really wanted to talk about that cause, yeah, as I said, once I've started talking about my disability and that so many people I knew we're feeling the exact same way and it's like, well, we all feel loneliness. And I'm sure there's so many of us that also get that way and we just don't talk about it. So, then it doesn't get addressed. And then it just continues in that cycle.
Tessa
This is the thing, right? Like you have a right to feel angry, there's real loss here. There's the loss of, you know, you know who you used to be, maybe and who coming to terms with who you are now. Like, there's grief in that. And what feels really important to me is to be mindful of, of how we're organising our emotion. If we're putting, grouping a certain bunch of emotions as negative and some as positive, um, it starts to devalue certain emotions, and the reality is that you know, each emotion has a value. And yeah, if you feel angry that feels like it's gotta go somewhere. Like it's important to know how to express that, and I can relate to a lot of the things that you're saying, you know, I have in the last several years been going down the path of actually getting a diagnosis around my endometriosis, which for a long time I just you know minimised as I just need to harden up and get over it because everyone gets their period, and you know, it's, it's like I, I had no way of measuring how intense my pain was versus somebody else and what was normal and what wasn't normal. And then having to find out when you're quite, you know, well, not old. But it feels quite late in life for me to be learning this about myself, and especially after actually having been dismissed a lot in the past in a medical environment, um, for your pain. And so, a lot of the things that I'm hearing you say are certain things that I I know just through my own journey of that, I can really relate to. And yeah, like, I was angry. I still kind of feel kind of angry. It's important to feel like we can express that and actually to help the people around us know what to do with that. Like, hey, I just really need to vent right now because this shit and like you don't have to do anything about it. You don't just try and fix it, but like can you hold this space right now, you know? Like little things like that. But like, people just don't know.
Rhiannon
Yeah, and like, especially like this old thing of you know, glass half full, glass half empty. And even like, if someone only interacts with you, like, 5 minutes out of the month and that 5 minutes they've interacted with you they may have, like caught me at a time where I'm feeling really crap and I'm feeling angry and like maybe I don't feel the most bubbly and I don't wanna engage in contact. But then they just automatically put me in that box and they're gonna just, just an angry person that was just said, I'm like, I don't think I might call him an angry or negative person. I'm just a human who feels those emotions, there's a whole, you know, world of different emotions out there and anger and then negative ones are a part of that just as much as happy and like, euphoric and joy. But it's really important for me to hold on to that anger and negative emotion because if I don't push that and keep telling these doctors and keep telling these people like I'm in pain. Then nothing's gonna be done. And that's kind of like setting a standard of what you'll accept.
Tessa
Yeah. I mean, there's an element, right? Like if we're thinking about our emotions in the sense of, they all have a value, if we look at something like anger, you know, it can fuel change, it's anger that drives reform, you know, at the at the end of the day, there's a lot of value to it. I think whilst this is a big part of your experience, it's not all of who you are, right? Like there's more to you than just the fact that you know you have, you live with, you know, chronic pain. You know you've got the full range of who you are. And I think sometimes because there's no spaces where we can really safely express this angle, or there's a limiting spaces where we can safely express this angle, we can get stuck in it and then it does become all of our identity. Then it does become all of who we are. And then we don't, we don't have these opportunities for the rest of us to come out. I think that's the, the thing that feels important to be able to navigate. And this like, what do you think, what comes up for you when you hear me say that?
Rhiannon
Yeah, well, that's and that's something I've been sort of struggling with the last few years like. Something that made me really think about identity. I studied over in Belfast, um, in 2019 and one of the teachers, he made a point about all these the troubles and that was fought over identity. And you know nowadays the people like his daughter and that he was like she wouldn't argue over identity like in the same way we argued over identity like she identifies probably as a feminist. Like that's her identity. And then there was that really, like, triggered tying my brain cause I was like, I don't know, like, yeah, what is my identity? Like, who am I? And I started thinking about that and I was like, yeah, I'm a feminist, I'm an activist, and so I started like as an adult really tapping into the parts of, like, my personality I like. I like fashion I like second hand fashion and I really like, you know, like parks and rec. And like all my favourite shows, like those parts of my identity as well. But then when I became sick, it was like, this is an important part of my identity I need people to know. But now it's like yeah, I think most people only see that as my part of my identity, which isn't bad. But you know, there's a part of me that, yeah, I love going out and going to a gig and having a beer with mates and watching some live music, or going to a drag show and watching a drag queen or king performance. And yeah, it's like I only sort of my close friends get to see that part because I am so explicit about the disability part and the politics and activism and feminism.
Tessa
I'm really curious to know, like, cause you've obviously done a lot of really amazing work. What are some of the strategies you're wanting to start to kind of figure out here?
Rhiannon
I think like the main thing I said, like I've done a little bit of it is being OK with having those negative emotions and being able to hold the space for them, but also being able to then have those uncomfortable conversations with my friends to let them know, like, ok, you know, I'm internalising this and like, no one's ever setting out of their way to exclude me and I know that. Like, the logical part of my brain knows that. But then that little anxiety and those little moments kick in. And I'm like, well, what if they are? And it's like, I need to be able to. I'm an adult. I need to be able to sit there and you know, as you said, hold the space for those negative emotions, and then those like awkward conversations. Or like maybe they're not even awkward. It's just that I've never learned to deal with that in a healthy way.
Tessa
That's it, you know, and I think when you're talking about friendship, it's hard, right? Because how do we do that with friends? Like, I think there's, like, maybe a lot more noise out there or teaching out there when it comes to like our romantic partners, even with family members? But with friendship how do I set the expectations of how we show up with each other, but also like how do I help my friend know how to be in relation with me? It's like helping people understand you and, and creating the space for them to, for you to understand them.
Rhiannon
Yeah, and like I've done that in the past in relationships, like romantic relationships, I've been like, ok, this was like, this broke or severed the trust. This is where, we're so willing to do that, you know? It's us against the problem, not us against each other. That type of mindset, but I've seen that in relationships, and you know we see that in the media and stuff, but we never see that in friendships in platonic relationships. And yeah, it's just a really interesting thing, and it's something I've even like looked into studying on the political side of it. Yeah. And then, you know, my brain goes to like the policy side of it. OK, well, why are we as humans doing this? And it's like, well, actually start looking at it from that point and just sit down with your friends and like start that change.
Tessa
Yeah, totally. What feels really important when it ever comes to like addressing tough conversations is that we want to be able to feel the emotion first, because if you don't feel it, then it certainly will come out in the conversation that you have. And the reality is that we want to create a space where we can feel through all of it and that whatever comes up, we have permission to feel all that. But that ultimately when we get to the conversation, it's not that we've dealt with the emotion so much because the reality is that, you know, it's still gonna maybe come up a little bit, but maybe it's not as heightened because we've had some kind of space for it to exist before we come into that conversation. I guess I'm curious to know if you could write like an uncensored letter where everything on it goes, like it's, it doesn't it doesn't matter how nice it sounds or how, like, even PC it sounds right. It's like we can just, we can just say exactly what we're thinking and feeling. We just get it all out in one go, almost like a first version. And then coming around and like almost creating like a secondary script for like, OK what would that conversation look like in terms of what would I really want to be able to share and what am I wanting to get out of this conversation? Like what is it like, what is the goal and how can I make sure I'm sharing that you know in that?
Rhiannon
100% yeah. You're having these sort of the interpersonal relationship dilemma like whether that's platonic, like romantic or with family and you know, and we don't discuss things like that in our personal relationships until it comes to a moment of lack, high tension or pressure. And then, yeah, you're going to lash out at each other and then yeah, you go home and then you're like, wow, I really should have said those horrible things or something like that. But then I find that I've never really had the opportunity to then go from, OK, we've reflected on that and then come back together and be like, OK, let's talk about that because then I've just had the friendship like just end. Maybe if I let that out and like come back to it in a week, it was just maybe an issue I was having with myself and it kind of like then manifested into reflecting in my personal relationships and you know, and that is something, you know, when I'm going through a period of time where I don't feel very sick and I'm like my pain is very minimal and stuffs going well, then I'm like, oh, I don't have an issue with friendships. I'm really good at this and it's like that's cause you feel good, right now like?
Tessa
It's also the perfect time to actually be, you know, using that as an opportunity to have those kinds of conversations when we are feeling well, right, and that's why it's like if we can give space for the emotion to be and exist, what is this emotion trying to teach me right now? Then I think it brings the question of like, well, OK. Well then what is, what does the conversation actually look like? You know what does it actually then mean to sit down and to be even coming from this reflective place of hey like you know, I was thinking the other day about our friendship and I did some reflection on it and like, this is what I learned about myself on it, like, even just bringing a friend on in on it that way coming into the conversation that way can be so disarming and actually deeply connecting for the both of you.
Rhiannon
Yeah, and I guess that also eliminates that awkwardness of being like ok, hey, can we talk about this issue? So, it's always like yeah, when it's like when you know your partner's gonna break up with you, like, hey, we need to talk and your like fuck, I don't want to have this conversation. And I think that's kind of like I'm very good at avoiding having confrontation and, you know, and that's how I dealt with it as a kid. And I'm learning things as an adult is difficult and it's not like you're just learning like a topic or something. It's learning how to sit and deal with emotions, or you know, how does it go from someone just being acquaintance, you see to then like developing a good connection. It's like I just feel like I need to go up to people. Like when you're a kid in the in this playground and like, hey, do you wanna play together? Or hey, do you wanna be friends?
Tessa
But that's exactly it. If there's something that happens to us as adults where we start to think that we're, we're just not supposed to pursue friendship anymore. And the reality is that it doesn't change actually the same principles apply whether you're a kid five years old, on the playground, or whether you're an adult. You know, we have to pursue friendships, and we have to be vulnerable. We have to say, hey I really had fun with you. Can we hang out?
Rhiannon
Yeah.
Tessa
Can we do this again? This is fun, I feel like you're kind of like my people, you know? Like it requires us to, to have to. Yeah. Show parts of us that. Yeah, maybe. We haven't learned how to do that. Maybe we've tried to do it in the past, and it's been squashed down. So, this healing work that's needed to have in there. But this is all stuff we can practise and it's absolutely all stuff we can get better at, right, like with the practise that we do. The first place to start any of this kind of work is with people that we get a sense, a safe and somewhat safe to do that with at least more safe than others, you know.
Rhiannon
Yeah, 100% cool. I can do that. Yeah, easily. I can definitely do that.
Tessa
OK, great.
Ali
So how did your time with Rhiannon go?
Tessa
Yeah, I mean, Rhiannon an amazing, amazingly intelligent human being. So what a privilege to be able to spend that time with her and to be able to hear her story. Um, she has so much passion and enthusiasm, actually and, and she feels like a really important voice in that space.
Ali
And we know that people experiencing a disability often experience more loneliness. How do you think this showed up for Rhiannon?
Tessa
I mean, there's so many layers of Rhiannon's experience of loneliness. You know, it's not just the fact that, you know, she has a disability. It's also the fact that, you know, how she's being treated in investigating and trying to get diagnosis for these. There's so many layers of her experience that is isolating and I believe that would be the case with, with most people that experience disability, it's, it's never just that.
Ali
And this is why it's so critical to come back to the definition of loneliness, because people often correlate loneliness with being alone. It's actually not that. Loneliness is when there's a gap between what you are experiencing and what you want to be experiencing. And so, when there's that chronic gap. A perceiving, especially in comparison to others that your experience is different, that's where loneliness creeps in. It's not just being alone. Some people love being alone.
Tessa
Yeah, exactly, exactly.
Ali
And as you're talking, it's just reminding me of how multifaceted we all are, that yes, we might be focusing in this episode on loneliness and disability, but in fact, people can be living with so many different variables at one time. So, we don't necessarily want to oversimplify someone's experience.
Tessa
That's right. And, you know, loneliness is one part of our experience. You know, there's so much more to all of us than our hard days or our tough days, or our lonely days. That in amongst all of that, there's still the person that you know, loves to kind of talk about politics - In the case of Rihannon – and, and that gets really excited and, and motivated when you know she's being silly with her friends and, and laughing about. You know, the shows that she's watched. So there's like there's so much more to us than obviously just what we're maybe focusing on in, in this kind of a setting.
Rhiannon
So, it's been about two weeks since my recording session with Tessa, and since then it's made me realise how often when I do think about when I am lonely or I'm struggling with human connection or anything like that, I tend to just kind of push it away. So, the last few weeks I've actually been quite unwell, so that plus what I discussed with Tessa has given me time to actually sit with those feelings and try to understand the exact feelings that it is not just sadness, whether it's loneliness, whether it's rejection, whether it's hurt, if it's fear of like creating connection. And it's just been really insightful, I think. And yeah, it's really had me sort of rethinking every relationship I've had throughout my life and with like sitting with these feelings and learning to have difficult conversations, how differently they could have ended up. And I'm really excited to chat about it some more with Tessa.
Tessa
Hey, Rhiannon. Hey. Hey, how are you feeling? This is, I guess our last session together?
Rhiannon
Yeah, feeling good. And actually, I think doing this podcast has come in perfect timing for me because it's been a tumultuous year. And so, it's been really, really beneficial and kind of allowed me to look at things in a different light like yeah, prioritising work and school and stuff like that and always have been. But, you know, I also have to pay attention to the fact that at the end of the day, everyone needs friends. Everyone needs human connection. You know, I've even reached out to some people. As we said, like, when you kids, you'd be okay, do you want to play? Or hey, do you want to be friends? You just outright with her. And I've even said that to people like, hey, I really love like the little chats we have now. And then I would love for us to like, hang out and be friends and stuff from like, I never would have done that. And like for fear of rejection. So it's just really proven that yeah, we're all the same. We all at the end of the day crave that connection. Yeah,
Tessa
One of the things you and I sort of, I guess was sort of looking at specifically was kind of around like, how do we have these sort of tough conversations. And I guess the framework that we were specifically looking at with this was, you know, you being able to feel like you can have these kind of vulnerable conversations with your friends around your needs. And you know, what you're sort of hoping and wanting from them? Have you been able to have those conversations,
Rhiannon
Not as much as I'd hoped to because I am very, I have had a very chaotic period of life whilst we've been doing this. But I think it kind of made me realise, like, I'm gonna go meet a friend, and you know, maybe a difficult conversation is going to come up, how am I going to be prepared in that moment, to not just go into defence mode? You know, I know the reason why I feel this way. I know why I get on the defence, but they don't know that they don't know why I might get on the defence about that. Or my I might feel like, oh, my God, they're not talking to me. They hate me. And it's like, they have they ever outright said round and I hate you. And it's like, well, no, they haven't. And it's like, you're just assuming this harmful narrative about not only the way people view me, but also assuming that they think that way, and also…
Tessa
The way you see you, right, like it's not even just about others. It's also how you're seeing yeah…
Rhiannon
Yeah. And then I was like, if a friend came to me and said, you know, I haven't reached out because I thought maybe you didn't like me anymore. Like, that's ridiculous. Like, what do you mean? So why can I say that to myself?
Tessa
Yeah, yeah, exactly. I think as we get older as well, one of the things we start to, I think, maybe learn to become more okay with, not everyone does have to like us, that doesn't actually then mean that we need to take that on as and give them the power as to what we should then think about ourselves. Yeah and…
Rhiannon
I think as well, like, I don't know, where everyone's at everyone may be going through their own thing. I don't know what's happening in their day-to-day life. And right now, they're channelling their emotional state into me and I have been trying to think, well, I don't need to put that much pressure on myself. You know, everyone's got stuff going on. And I think it's given me a sort of a bit more forgiving with people as well.
Tessa
That's it, you know, a lot of the times people's really big sort of reactions or even sort of harm farm for behaviours, I mean, it it's all got to do with their own stories, their own pain points, their own suffering, and that's the thing like if we can if we can find a way to to separate that to see that oh, that's says more to do with what's going on for them or what's gone on for them, and that it's actually not something that needs to weigh on me. I think it can mean that we sort of have a lot more sort of empathy but also a lot more patience and a lot more self-compassion.
Rhiannon
Sometimes I've been able to in professional in schools, circumstances be like, I didn't have the words for it before but be like, what is the narrative? I'm telling myself, but I've never allowed that grace for myself in my personal well-being and life and I think this experience has allowed me to go okay, no, well, you can prioritise that too.
Tessa
Yeah.
Ali
Early adulthood can be a particularly tumultuous time for friendships, we’re navigating so much change. It can all be tricky and it can bring up a lot of confusion. What’s really critical is the relationships we have at this time. Learning to prepare for vulnerable or difficult conversations is very important at this age, otherwise it can be way too easy to lose a friendship from avoidance. We can’t guess what’s going on in anyone else’s head, so you might let a friend go because you completely misunderstand how they felt. Something I’ve learnt is that the lead up to a challenging conversation is often the hardest part. Once you start to talk to a friend about how you feel, if you can avoid the defensive response, it’s usually much easier than we all think it will be. In fact it’s a massive relief. And, as Tessa said here, if you lose a friend because they’re not the right person for you, that’s ok. We’re not all compatible.
If this show has raised any issues for you, remember there are always places to turn, such as Lifeline on 13 11 14; Beyond Blue.org.au; and ReachOut.com, which offers dedicated support for young people. For more information and tips to help you if you’re feeling lonely, visit we are lonely.com.au You can also follow us on TikTok to meet the participants and mentors. We are Lonely is produced as part of Medibank’s ten-year commitment to addressing loneliness. I’m Ali Walker. This show was produced and edited by Liz Keen and Simon Portus from Headline Productions with support from Cara O’Brien and Olivia Patchett. Our theme music is by Kenneth Lampl. Our team from Medibank include Karen Oldaker, Katrina Weir, Jessica Salter and Rebecca Carter. And project and Production Management by Rob Ranieri and Nick Randall from Ranieri and Co.
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