Speaking to 9Honey she said, “[Carer Heidi] comes out when mum and dad are sick, and I don’t think about myself.”
She added, “They’re everything. They get put first.”
At 17 and then physically able, Heidi fully stepped into the role of carer for each of her parents, an alienating concept for many people in her life. She conveyed that the role has been isolating, exacerbated by the complex fact that her parents are living with “invisible” chronic illnesses.
“They can be fine one minute, but then something can happen and my caring role can go from nothing to 100 the next minute,” Heidi explained. “It’s really situational.”
From birth her dad has been living with a genetic condition that has now brought on multiple chronic health problems, while her mum is navigating chronic nerve pain due to a 2001 workplace injury.
Managing the complications from her parents’ health happens regularly, but she says that doesn’t mean every day is a bad day. Even when they’re out in public, other people regularly don’t pick up on the degree of their illnesses.
The bad days for Heidi’s mum are significant, meaning she could be doubled over vomiting and not able to move out of bed. Heidi explained her father’s health conditions can more easily be seen, as he walks with a limp and may use crutches.
She continued, “He’s not in a wheelchair, he’s not always dependent on another person.
“People have this perceived image of what disability is. And if you don’t fit that person’s image sometimes, then they just think you’re lying or you’re making something up to get attention.”
Navigating the ups and downs has been tricky for Heidi. Over the years she has had to cancel plans with friends when her parents’ health problems have unexpectedly worsened. Friends haven’t believed her as they had seen her parents’ “fine” only hours or days before.
Heidi said, “[Mum] only comes out of the house when she’s good, because that’s only when she can.”
If ever given the opportunity to open up about her caring responsibilities, in a meaningful way, usually it would be met with only one response.
“If I ever said something to someone, their response was, ‘That’s not your problem to worry about. Don’t worry about it,'” she recalled.
Thinking back, Heidi remembers being eight and concerned about whether her mother would become paralysed from a surgery she had to undergo, and all the greater difficulties that would eventuate from that.
Currently she provides her mother with the necessary medications, and every two weeks, she injects her dad with his required medicine. These measures aren’t activities she can switch off if she wants to or decide to stop doing.
She explained, “Instead of talking about it … I don’t usually talk about it to mum and dad because, well, they’re really the only people I can talk to, but I don’t want to put more stress on them. And if I talk to other people, they’re like, ‘Well, why are you worrying about this? This isn’t your problem to worry about.'”
Heidi finds it more manageable to lock down these thoughts in her mind. Other people she’s found, including psychologists who initially see a “normal” teenager, don’t fully grasp her when she does try to open up to talk it through.
However, she does find that in trying to safeguard her peace, the flip side is placing herself under intense emotional strain.
“It’s a huge emotional toll on me. It’s the reason I left school. I didn’t have the adequate support that I needed. It’s taken a huge toll on who I am as a person. It’s caused me to lose friendships. I just felt so isolated. I was like, ‘No one understands what I’m going through. No one wants to understand.'”
Heidi’s story is not unique, there are many across Australia taking on the responsibility of caring at a young age. Heidi is not alone in feeling isolated.
This reality seems to be intensifying with one in 10 young Australians providing unpaid care for a loved one. An initiative called the Little Dreamers’ Young Carer Advocacy Project has found that 57% of young carers acknowledge their position adversely impacts their mental health.
Little Dreamers has conducted 10 months of intensive focus groups and surveys with young carers throughout Australia. Data gathered shows five core areas the Federal Government needs to improve in so as to appropriately aid Australia’s young carers.
CEO Maddy Buchner of Little Dreamers, who has experienced being a young carer, explained, “Young carers often need increased support around their sense of identity, their health and wellbeing, social connection or social isolation, employment and education and financial literacy.”
She further explained that it’s a usual occurrence for young carers to leave school completely. With a higher likelihood of unemployment, living below the poverty line and additionally needing to navigate complications of mental health, theirs is a very different quality of life compared to peers of a similar age who don’t share the responsibility of caring.
Heidi feels all this keenly. Going about life in rural NSW, she is managing the basic tasks of grocery shopping and doctor’s visits, while always factoring in at least a 30-minute drive, and compounding the difficulty of completing a certain activity and upholding her caring responsibilities.
Since having been diagnosed with autism, Heidi is able to receive NDIS funding. However, there is no compensation through Centrelink for her work and role as a carer, a reality echoed by 65% of young carers across Australia.
In Heidi’s case, this is down to a technicality. As she is diagnosed with autism, which is classified as a disability, she subsequently does not meet the strict criteria set about for a carer to be eligible for funding.
Rolling her eyes while speaking to 9Honey, Heidi conveyed, “I have autism, so I must be unable to do anything.
“It makes [me] feel inadequate because the government says, ‘You know, you can’t be a carer if you have a disability yourself.’ But what people don’t understand is Heidi, Autistic Heidi and Carer Heidi are different things.”
Explaining the obstacle of her sensory problems, Heidi can find it difficult to go shopping by herself. However, when her dad and mum are unwell, she is able to set aside her own challenges to be able to complete the task – something she has done as long as she can remember.
“There [are] two halves to me. So when Carer Heidi is in place, Heidi’s needs, kind of, just don’t really exist anymore.”
A perfect fit, Heidi has partnered with Little Dreamers and is one of its ambassadors. The organisation and its members are active in advocating for young carers and providing them with a host of support services.
From shorter term direct support programs, including its ‘Dream Experience’, providing young carers with a day off to enjoy time with friends and to choose how to spend their time (such as hot-air ballooning or rocking out to a favourite musician’s gig). Long-term personal growth and development programs are also provided.
Maddy highlights, “What we try [to] do is focus on the young person, not focus on their caring role.
“We want our program to focus on making this young person the best young person they can be and improving their whole quality of life, rather than just focusing on how to make the carer role easier, or how to make them better carers, because ultimately, we know that these young people deserve the same opportunities as their peers as well.”
Speaking about her time with Little Dreamers, Heidi explained that it has provided her with a new sense and admiration for who she is as a person, and being involved as an ambassador is her desire to pay the gratitude forward.
“If it helps one person feel a little bit better about themselves, that’s all that matters.”
While unable to alter what’s happened in her life, Heidi shared that she has made peace with it. She said her path and experiences have also shaped her and guided her to seek out working in medicine, a career she chooses to be in.
Heidi advocated, “But it doesn’t mean that any other child should have to go through losing their childhood just because they have to take care of their parents.
“And there’s no support system in place. You can’t eradicate carers, but you can support them.”
An opportunity to make a difference this festive season, every purchase from The Body Shop until Christmas Day will help aid Little Dreamers in its mission to improve the quality of life for Young Carers, who have been tirelessly working to support their loved ones all year round.