Many people believe that a young carer is a child or young adult who cares for and supports a family member or sometimes a friend with a physical or chronic illness, a disability, or who is aged. But young people also take on caring roles when the person or people they love experience mental illness or mental health challenges.
In Victoria’s Mental Health Services Annual Report 2019–20, the then Department of Health and Human Services estimated there are 60,000 Victorians caring for an adult living with mental illness, with about 9,000 of these being young carers. As many as one in 10 young Australians grow up as a carer, with many not even realising that there is a term for the work they are doing. As such, young carers may feel alone in their experience and often have difficulty finding the right support at the right time.
It’s National Carers Week in Australia from 10 – 16 October, and to help recognise and celebrate young carers especially, we spoke to four young people in the Satellite community who, without recognising it, were young carers themselves. We explore the reasons why they didn’t identify as one.
“It felt like my caring didn’t count”
– Lotti, 29
“The word carer was never one I used to describe myself, I was just Mum’s daughter. It wasn’t til I moved to Australia in my twenties that I heard the term young carer. By then I wasn’t even sure if I counted because of how other people spoke about my relationship with Mum – let alone not being very young!
When Mum’s situation came up or when I had to speak to New Zealand mental health services everyone would say ‘but isn’t there someone in NZ that cares for her?’ and I had to practically justify myself by listing all the things I do – from buying her groceries to being her emotional support hotline 24/7 to taking redeye flights across the Tasman to turn up to Family Court hearings with no sleep to taking urgent calls from airport security when she gave services the runner. I got increasingly frustrated that no one considered this was ‘enough’ and that there was this invisible requirement that you had to be physically present to count as a carer.
One of the few benefits of COVID-19 is that suddenly everyone empathised, and I don’t have to justify myself in every discussion! What I love about Satellite and the young people in it, is that there is zero judgement around ‘what counts as caring’. There are young people that are under huge pressure themselves but not once has anyone made me feel like what I do isn’t enough. At Satellite, we get that caring looks different for everyone.”
“My journey to identifying with the label has been complicated”
– Hannah, 19
“Being a carer will always be a core part of who I am; I’ve become a product of the compassion that I give and the resilience that I hold, and I’m proud of that. But my journey to identifying with the label has been complicated.
In my involvement with carer’s organisations throughout the years, I have met people who have shared stories of growth and challenge. These stories were inspiring to listen to, and I found comfort in our similarities. However, at the time I couldn’t help but judge our differences. These stories often focused on disability and physical illness and the challenges associated with caring for those. I noticed there was a lack of focus on mental illness. Initially, this made me doubt my role as a carer; what I do to care for my family is so different from how they care for theirs. I thought ‘how can we be the same if we are so different?’
I have come to understand that being a young carer is a spectrum. Though we share our similarities, we must embrace that each of our stories is beautifully different.
I want to acknowledge that being a carer for mental health is unpredictable and complex and that my caring role will look very different to a young carer who cares for someone with a physical disability. That difference is not a barrier, and over time I have learned to embrace it. Every young carer has a unique story to tell, we need to keep creating spaces for their voices to be heard.”
“In my caring experience I mostly just try to be her friend, because that’s what she really needs.”
– Lily, 13
“I care for my mum who suffers from BPD (borderline personality disorder). She is definitely getting better and getting treatment, but she does have her moments; nowhere near as extreme as she used to. I help her by just giving her some positive attention and making her coffee and bringing her Pepsi (which gets kinda annoying after a while). My dad even told me that when I was little, I got so tired of bringing her Pepsi that I shook up the bottle. In my caring experience I mostly just try to be her friend, because that’s what she really needs. Thank you for reading this! I hope you have learned more about a young carer’s experience.”
“…Being a young carer almost can’t really be defined, as it is broad and looks different for everyone”
– Gab, 26
When I first discovered Satellite, I was unsure if I even qualified. I had been looking after my mum for quite a while and whilst I had encountered many challenges, I had assumed everyone else had it worse, that I’d stick out like a sore thumb in the group and feel like I was being – in all honesty – dramatic!
I even scheduled a phone call with Rose to discuss my concerns, where she assured me everyone will all have different stories, and that’s when I realised that there was no “one way” to be a carer.
I have a complicated relationship with the term “young carer” due to the fact, whether intentional or not, people tend to immediately feel a sense of pity, often saying ‘oh you’re so young to be dealing with this’ or things like, ‘I don’t know how I’d cope at your age’ which I found to be incredibly invalidating of the strength and capability young people have.
One message Satellite really drove home for me, was that I was capable and strong, and didn’t once talk down to me, or make anyone in the group feel, regardless of the mixed ages, that people had it any better or worse than others because of how old they were.
Another thing Satellite gave me was the dignity to be seen as a whole person. Often, I feel, a sense of identity can be lost, and the term ‘young carer’ can almost be all encompassing in the wrong hands, and take away everything else that makes a person, just that, a person! It felt like the weight of an elephant’s foot had been lifted off my chest when I realised that Satellite was the kind of place where I was treated as normal and not tiptoed around or made to feel like I was different in any way.
It was this approach that made me reflect on the way I had been self-internalising a lot of judgement about what a carer is, and if I was doing enough and what ‘enough’ even looked like – would anything ever be enough with that mentality?
I’ve been caring for my mum coming up on six years now, and the start of the journey looks very different to how it is now. Satellite has made me realise that not once did I cross some imaginary age threshold into being a ‘carer’, that I was valid at every step of that journey – from when it was a relatively backseat role, to the much more hands-on approach it is now.
So, I guess for me, being a young carer almost can’t really be defined, as it is broad and looks different for everyone. There is a sense of pride in it, the fact I am young and able to handle challenges different from my peers, and that I’m able to be there for the person I love. But that it’s not a term I particularly feel comfortable seeking an identity in, as I am so much more.
All I really know that it means for me is that it comes from a place of love and no judgement, and that applies to both my mum and me, in equal parts.”