Luke became the capable one long before he learned how to let others care for him. Growing up as a young carer, he learned independence, responsibility and resilience early, but also the weight of carrying more than most people could see. Luke speaks with Patty Kikos about living through multiple lenses — as a consumer, carer and clinician — while exploring neurodivergence, identity, boundaries and the challenge of separating who he is from what he does for others. He reflects on learning to accept support, setting boundaries without losing compassion, and why the person behind the roles has always mattered more than the roles themselves.
Content warning: This episode discusses mental illness and family trauma. Listener discretion is advised. This podcast is for general informational purposes and isn't a substitute for professional mental health advice or treatment.
Disclaimer: The views, language, experiences and opinions shared by guests on this podcast are their own and do not necessarily reflect the views of Mental Health Carers NSW (MHCN) as an organisation.
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Jonathan
MHCN acknowledges the Traditional Custodians of Country and pays respect to elder’s past, present and emerging. We are the peak body for mental health carers in New South Wales, and we advocate for carers rights and systemic reform.
Jonathan
Caring Between Minds. Mental Health Advocacy in Action.
Patty
This episode discusses trauma, caring and lived experiences. Please listen at your own pace and reach out to support services if you need to.
Luke
Have you been keeping count of every massive thing that's happened for me?
Patty
No. I'm having too much fun chatting to you.
Luke
(Laughs) That’s fair enough. So, if there is a perimeter breach, I would maintain my own boundaries and for context everyone, boundaries are not about controlling someone else's behaviour, they're around controlling yours. Example, I said I'm not going to continue to enable a certain behaviour by responding further. My boundary is, I didn't respond. So, you control your responses, not other people. And you walk away if that's the boundary you set.
Patty
Luke, I grew up learning how to hold responsibility in ways most people don't usually get introduced to until adulthood. He moved through foster care, family and personal transitions, and a general lack of stability. Where ‘making it up as you went along’, just became how things got done. Somewhere along the way, he became fluent in a few different worlds, such as lived experience, clinical spaces, and systems that don't always speak the same language as each other.
He describes himself as someone with a few overlapping hats, such as consumer, carer and clinician, though he's quick to point out they're not necessarily separate outfits, they're more like different angles on the same human. He's being shaped by neurodivergence, caring responsibilities and the ongoing process of honouring his boundaries sustainably, with his career. Today, we're talking about growing up too early, learning to slowly untangle yourself from other people's expectations, and stepping into who you've always been. Even after the world expected you to be different. I'm Patty Kikos, and you're about to meet the fabulous Luke Randall, a man whose life story doesn't exactly follow a straight line, but somehow still makes perfect sense when he tells it.
Luke
I care for someone who has mental health challenges associated with early onset Parkinson's and epilepsy. It wasn't always that way. It used to be three people. Although recently that number has just gone down to one family member I care for.
Patty
Luke, you have shared that caring started really young for you even as early as 5. What do you remember about those early experiences?
Luke
I remember it just being a part of life. There wasn't really a clear starting point. It was just what I did. Cooking meals, helping with cleaning more than normal. And for me, caring my whole life is socially isolating. So naturally I didn't have any other household or family dynamic to compare it to. So, there wasn't a sense that what I was doing was at all unusual or not ‘normal’.
Patty
Well, as things moved into your early teens and became more full time for you, what did that actually feel like from the inside?
Luke
It felt normal. Over time, that normal got heavy. Real heavy.
Patty
Can you tell us why?
Luke
So because it was normal. It wasn't really something I questioned. It just needed to happen. And I couldn't really choose to take a break. And from the outside, that could look like capability, independence, or typical teenage deadlines struggled with that assessment. But internally it was chaos. It was constantly adapting and holding things together. And one of the things that I couldn't hold together, and a lot of the people I speak to struggle with the same, is your mental health. We’re always prioritising the people we care for so that falls by the wayside. That's the reason it got so heavy.
Patty
I can only imagine. Because I know that you also experience different home environments, including foster care, living with relatives, and then ultimately choosing where you lived. How did those transitions shape you?
Luke
It definitely shaped me. How? It's difficult to say. What I do know is a lot of those experiences shaped a really strong sense of independence, but not in a way that was supported. So, it became what's known as ‘hyper independence’, not asking for help when you actually do need it. You learn to adapt quickly, but you're also making quite big decisions at a very young age. That hyper independence or what independence actually is, is something I've had to come back now and redefine on my own terms.
Patty
I would love to know more about that, because I know you've also spoken about an inpatient admission that you had as a teenager that you say saved your life. What did that experience give you that you weren't necessarily getting before?
Luke
It gave me space, space and time to just exist without having to do the things I typically do. But that was a double edged sword. Yes, it gave me space, but for five long weeks there was no school, no footy, no deadlines to panic about. But more importantly, there was no caring. Even though that pressure you’d think would be taken off of me because I wasn't actively caring. It wasn't.
Patty
But I bet you were still ruminating about whether they were okay, whether they'd taken their medication etc.
Luke
So it's not just me that thinks that. I definitely was going over that internal dialogue all the time, those five weeks. And I felt deep in my core that if my mind and body responded in the same way into what I thought was normal life at the time, I didn't want to be here, and that left me feeling a strong sense of dread. Now, I'm still not sure how I really survived those five weeks, but I did. And sometimes you don’t always need to know the reason why something happens. It just is.
Patty
It was a really, really important pivot for you, because not long after that, you were identified as a Young Carer. What shifted for you in that moment?
Luke
Yeah, another huge turning point in my life. Being identified as a Young Carer connected me to support and the other young carers. I remember the conversation with my school counsellor nearly verbatim, and especially how I reluctantly agreed that I was a Young Carer. I felt like, yeah, what I was doing wasn't normal, but it's typical enough and common enough amongst young people to be given a name, a label and lived experience and specific support services to help.
That conversation. That that flick immediately shifted me from a background sense of dread to, ‘oh yeah, my mind wasn't actually overreacting for nothing’. A lot of factors play into that burnout, and caring was just one of them, and knowing there's something there to help support and services were there to support that aspect. It shone a little light of hope or a bright light of hope for me.
Patty
I bet it did. I know you've said that connection and that community quite literally saved your life, and I believe that. What was it about that, that was so powerful for you?
Luke
It was being understood without having to explain the ‘why’ behind anything to justify yourself.
Patty
Yeah. Especially because not all our stories are the same by any means.
Luke
No. Even though they're not exactly the same, we still have those shared deep rooted experiences and challenges, and we connect over that. It creates a sense of grounding and connection that is really hard to replicate in any other space.
Patty
What do you think people misunderstand the most about Young Carers?
Luke
That being capable means you're okay, that you're not a Young Carer, because a lot of us have very complex situations behind the scenes that we're managing, even though it really doesn't look like it from the schoolteachers perspective, or the friends perspective.
Patty
Or the communities perspective.
Luke
Yeah.
Patty
You often talk about wearing three hats consumer, carer and clinician. And you know, I love the ‘c’ alliteration Luke. Do those feel separate parts of you, or have they started to blend into Luke?
Luke
I mean, I've always been me, Patty. Always been me. The difference is now I just have a bit more of an understanding of what role each part plays in my life and what piece of the puzzle, let's say those ‘c’ words are.
Patty
That's right. Because you're also a cuddler. You're also a cousin. (both laugh)
Luke
Yeah. Haha More ‘c’ words, how many more can we come up with? We're not going to start that list. (both laugh) I know which one now is actually most influential to sort of switch to in the room. That doesn't mean I'm actually hiding any of who I am. They're quite integrated, and I feel like that is hugely powerful to know when to switch the language, I'm using.
Patty
Personally, I think it's one of your superpowers, one of your many superpowers. You describe your work as translating between lived experience, clinical work, and systems. Which language do you feel most fluent in and where do you still have to work the hardest to be understood? That's probably a tricky question. It's probably two questions.
Luke
That's a hard one, Patty. You've put me in a hard position and space to answer that. I mean, they all play a key role. Again, it depends on the context, the purpose, and what is happening. I often shift between them depending on what outcome I want. Not manipulating anyone, it's just having the impact you want. No one language more than the other has me fighting to be understood.
Although one tricky thing in the lived experience space, is those discussions are quite nuanced and very, very exhausting at times. I think the policy and clinical languages are the ones I actually default to, because they're the ones in nearly everywhere, I get the ‘oh yeah’ moment where people actually understand, to a degree, what lived experience might feel like.
Patty
That's interesting because I think we need language to understand our experiences, as it not only facilitates that understanding, but it creates a connection without it, things tend to feel overwhelming and possibly undefined. And speaking of finding the right words for things we feel but don't always know how to name, I know when we spoke and you used the term ‘integration fatigue’, which has really stayed with me. Could you help us define what it is and when did you first realise that it wasn't just burnout, but something structural?
Luke
Yeah. A quick definition on what ‘integration fatigue’ is. It is those with lived experience who enter the clinical workspace or the mental health workforce. If you know what a peer worker is, they have lived experience, so they’re in that role for that purpose. You are often facing invisible struggles in the system that you once accessed and was harmful. We think we can help change it, but it often ends up causing severe burnout or integration fatigue.
For me, the changing point was actually seeing and feeling the experience that all the strength and power that those with lived experience bring into those days. And nothing around them actually changing to help support that. That disconnect creates a very specific kind of exhaustion, especially when you're facing KPIs and you can't provide the care and support that is actually effective.
Patty
Yeah. And this causes a huge burnout rate. For those listeners who aren't familiar with the term KPIs and possibly don't dislike them in social work as much as you and I do, can you explain what they are?
Luke
Everyone dislikes KPIs unless you're a funder. So, KPIs, are key performance indicators. So, the amount of appointments you have a day, the amount of contacts, basically anything you can do that helps justify what you're doing. Most of them don't actually focus on the outcome of the wellbeing of the person seeking support, or what I found in clinical work in general.
Patty
That's right, that's right. It's all about numbers, especially when it's dependent on the funding that the organization gets. So, it's a little bit of a one size fits all for any fellow clinicians out there. And my issue was there might be someone that needed me for a lot longer, but if I wasn't making my numbers, it would seem like I wasn't doing the work, when in fact I was. I was actually going above and beyond. And I'm sure many clinicians can relate to this. And much like workplaces and policymakers often need statistics before they listen, whereas people will connect with stories. How do you hold that tension?
Luke
It's hard to hold that tension, but it's often about translating between the two or perhaps three, depending on how you look at it. So, making sure the story itself stays intact and maintains its integrity. You feel safe using your lived experience, but also knowing when to use the data, and the structures that are needed for that. So yes, again, it depends on context as to which one you lead with, and the outcome you want.
And if you pick the right one for the right room, you can have a huge influence on what the outcome is, which is hopefully the one you want.
Patty
That's right. Especially when you're talking about advocacy and funding. You've said sustainability can be a safety issue. Would you be able to help us define it? What changes when we start doing it that way, for instance?
Luke
Yeah. So, viewing it as a safety issue shifts the focus from individual responsibility, so, the clinicians, to system responsibility, so KPI changes all that sort of stuff. And for my own experience and hearing that of others, the clinician skills are not the things in question at all. And that alone to me highlights that it is a broader systemic issue which can be a whole different conversation on its own.
Let's be honest, we've spoken about it in depth. In short, if the mental health workforce in particular isn't adequately supported, the risk of safety isn't just on the individual seeking help, it's on the organisation, the funders, the financers. It’s on everyone, including the clinician.
Patty
And it impacts the people receiving care, doesn't it?
Luke
Yeah, the clinician cannot be effective. We can't provide effective care.
Patty
Yeah. That's right. Because if those supports aren't in place, it leads to burnout for staff. And that puts a financial strain not just on the company who needs to recruit and train and onboard more staff, but also on the workers who need to take time off with no personal leave that's necessarily paid to them.
I think that theme of shifting perspectives, so from internalising struggles to understanding it in context really carries through on a personal level as well, because you received a later diagnosis of neurodivergence. How did that come about and what shifted for you once you had that understanding about yourself?
Luke
It came about because I was struggling and wanted some answers after ten years of being a consumer. Getting the diagnosis actually gave me a framework. For the longest time, I was trying to do stuff the way a neurotypical person would, or someone who doesn't have neurodivergence. Understanding the way that brain is wired actually helps me be more intentional with my energy, with my boundaries, and helps me be sustainable. I often do things at 3am in the morning because that works for me. Again, that is by no means the typical way, but it works.
Patty
Yeah, and you've spoken about your box. So that idea of capacity and what we give versus how we can replenish our energy. Would you be able to walk us through that?
Luke
So I have moved away from the ‘you can’t pour from an empty cup cliché’. I've used that in a number of talks in the past.
Patty
Haha me too! (both laugh)
Luke
So I've come up with something original, which is a box. It's not much different, guys, same concept. I imagine my capacity and my self-care as a box. So, if all my responsibilities and duties, my caring role, work, study, the appointments, it all goes inside the box. And if the box isn't reinforced, what happens if you drop the box?
Patty
Everything falls out. You lose things. Yeah, you miss things.
Luke
They break. Yeah. What I like to do is reinforce the box and that is self-care. So, we can put packing peanuts in. We can reinforce it, put a lid on it. So, when you drop it, you don't lose anything. It stays contained. And you stay okay, yourself as well. Mentally, it allows us to keep the show running. It allows us to show up to the appointment or get the assessment done. So, we're not actually barely holding it together.
Patty
You're still in the caring role now supporting someone alongside another person. What does caring look like for you today compared to when you were younger?
Luke
I’m no longer hyper independent. The caring role is a bit more shared. Well, a lot more shared. So, there's awareness around it, between our capacities and it's not as isolating. We get some outside help in sometimes too.
Patty
What does that adjustment look like?
Luke
Being honest about our capacity, communicating if we're not able to do something, or if we can step in or step up. And just help provide the care that and support that we so want to give whilst protecting ourselves at the same time.
Patty
Luke, you've made some really significant decisions around boundaries and safety in your family. What has that process been like?
Luke
It's been difficult and as you can imagine, saying that something is easy to just communicate your capacity. It’s not. The difficulty comes between the expectations around the caring role and what I want to do. Ultimately, it really comes down to what is sustainable for me.
Patty
So earlier you said, ‘if I can't do something, I just communicate it’, which sounds like a really simple sentence, but it's one that many people find very difficult to utter. If there was a perimeter breach these days. How would you manage it?
Luke
If there is a perimeter breach? I would maintain my own boundaries. And for context, everyone boundaries. And not about controlling someone else's behaviour. They're around controlling yours. Example. I said I'm not going to continue to enable a certain behaviour by responding further. My boundary is I didn't respond. So, you control your responses, not other people, and you walk away if that's the boundary you set.
Patty
Has the guilt actually lessened over time?
Luke
Slowly. When I've actually seen the impact of what looking after myself does on the wellbeing and the caring duties and stuff, I provide, as well as just my study and work.
Patty
And I know that you've experienced parentification and enmeshed family systems. What has it been like to start untangling that? Maybe we can throw in a casual little definition.
Luke
Sure. Maybe you could casually define it. You mentioned it.
Patty
Tag. You're it. Okay. (Both laugh) All right, so parentification is when a child is pushed into a caregiving role in the family emotionally or practically, and they take on responsibilities that would usually sit with a parent. In the context of Young Carers, this can look like looking after siblings, managing adult worries, or becoming the emotional ‘go to’ for a parent, often at the expense of their own childhood needs.
And enmeshment, as I understand it, is when family boundaries are overly blurred. So, a child can feel emotionally responsible for other family members or struggle to separate their own feelings and needs from the family system. So, for Young Carers, this can make it difficult to step back or prioritise themselves without an overwhelming sense of guilt or a sense of disruption. In both dynamics of family members emotions start to feel more urgent than your own needs. How has it been like, untangling your parental fixation and enmeshed family systems?
Luke
It's a messy process. Like you mentioned, my needs and feelings often got entangled with someone else's, so I didn't actually know what was mine, and how much was actually shaped by that parentified or enmeshed role. I've carried a lot of grief for what could have been if I was just a ‘normal’ young person.
Patty
When we spoken outside of the podcast, you said that transitioning was one of the best decisions that you've ever made. Can you tell us more about that?
Luke
So I'm just going to throw in another casual definition before I actually answer your question, Patty, because not everyone may know what this experience is like. Have you been keeping count of every massive thing that's happened for me?
Patty
No, I'm having too much fun chatting to you. (both laugh)
Luke
Fair enough. So, for me, I am transgender. So that means if my gender identity doesn't align with my biological sex. So being a trans man, my identity is male, but my biological sex is female. And what transitioning does is it helps align you with who you are, such as getting hormone treatment or surgeries. But this experience was massive.
Another massive thing. And it gave me, Luke, some alignment. It wasn't really about becoming someone else. I mean, really, the only thing that changed is what people would yell out to me to get my attention, or if I was in trouble. Patty, you haven't done that yet. Yeah, I was just literally labelling it for others so that they knew what might be relevant in terms of supporting me, as well as getting this cool beard. It's going nowhere.
Patty
But that beard is amazing. It should never go anywhere.
Luke
Oh, it's never going anywhere. I can promise you that Patty. (both giggle)
Patty
And what does good support look like for someone like you? Someone who is used to holding a lot.
Luke
For me, good support looks like being somewhere in an environment where I do not have to explain anything or feel the need to justify myself, because that's exhausting.
Patty
Yes, it is.
Luke
There's, a level of understanding around capacity and flexibility, so that helps me just not worry about having to meet an expectation. I've got one friend. I'm not sure if anyone else has ever done this. Especially if you're neurodivergent. And we often just sit on opposite end of the couch, and we send each other reels that, that we think of the other person and we see it. Sometimes they do nothing and we just exist.
Patty
Yeah, I've got someone, actually I’ve got a few people in my life like that. You said you prefer to be ‘Luke’ first rather than leading with identity labels. What does that mean for you?
Luke
For me, it's the framing that knowing a label doesn't actually change who you see in front of you. So, if you see the label, that may actually change how you see me. And I want to see the person as a whole. And labels really just give someone context in a way to understand some things around how my brain works or what might help when I need support. They're not at all the headline. They do not change the Luke or the person you see in front of you. It does help knowing them no.
Patty
Yeah, yeah, labels are just sidebars in how we make sense of people and experiences. They can be useful, but they're never the whole story. With that in mind, I'd love to take a brief detour into something a little lighter. A set of Fast and Furious questions to help us get to know more about you beyond any label or framework. Are you ready?
Luke
I already I was born ready. Patty. Let's do this.
Patty
Yeah, you were (both laugh) What aspect of your life most excites you now?
Luke
Getting back into clinical work as a counsellor.
Patty
How long has it been?
Luke
I am starting my private practice. So, I'll be seeing people soon.
Patty
That is exciting. Congratulations!
Luke
Thank you.
Patty
What's a small thing that instantly resets your nervous system?
Luke
I run in the rain. Or if the weather dare be nice, go on a motorcycle ride.
Patty
When did you learn how to ride a motorcycle?
Luke
Long story. Got my license when I was first 19. Had years off because I didn't progress. And then I got it again this year. So, I've got my P’s now.
Patty
When you're at capacity. What's your tell? How do we know?
Luke
You would know if you looked at my calendar and you would see the same thing day after day. So, it's either all footy coaching, all social work, or all life admin. Variety and novelty keep me sane. I need that to be sustainable. So, if you see my calendar, it's footy, footy, footy. That's my tell.
Patty
I see variety is the spice of…Luke. (both laugh)
Luke
I am, yes! A little spice. One of them.
Patty
What's your go to phrase when you're at capacity, but you're still trying to function like a professional human?
Luke
‘Give me a minute, my brain isn't training.’ (both laugh)
Patty
Oh. But your brain rained beautifully today, and we are so blessed to have you.
Luke
Thank you. Patty. I'm glad my brain was braining to you. (laughing)
Patty
It brained hard! (both laugh) And that is a wrap for most folks. I hope you loved my chat with Luke as much as I did. And if you're more of a visual person, you can watch us on YouTube. And if this episode touched your heart or inspired you to share it with someone else, please follow, subscribe and leave us a five star review so that the algorithm gods treat us kindly. Bye for now everyone.
Jonathan
Everything that MHCN does is guided by the lived experience of people with mental health concerns, and the families and carers who support their recovery. We're very grateful for their contribution to this podcast. To support, or find out more about MHCN, you can donate, join our free advocacy network and subscribe to our newsletter. All those links are in the show notes below.