u/MilknBones

I feel like I’ve fallen into a gap in Australia’s welfare system.

This is only my own experience, and I know other people will have had different ones. I also want to say upfront that I think Australia’s healthcare system has been excellent to me. The doctors, nurses and specialists looking after my cancer have been incredible, and Medicare has made treatments that would otherwise be unaffordable accessible.
My frustration isn’t with the healthcare system. It’s with everything that comes after.

I’m a 32 years old woman and was diagnosed with stage IV cancer when I was 24. Over the past eight years I’ve undergone multiple clinical trials, radiation therapy, surgeries and countless other treatments. For almost six years after my diagnosis I continued working fulltime while receiving treatment, but by late 2024 the combined effects of the cancer and the treatments meant I simply couldn’t keep working.

The cancer eroded the bones in my shoulder, arm and hip badly enough that I needed joint replacements. I can still walk and generally look “fine” to most people, but many everyday activities have become much harder. Using a computer for long periods, cooking, cleaning, shopping, showering and exercising all take far more effort than they used to. I still have a reasonable quality of life, but only because everything requires careful planning and a lot of energy that I often don’t have. The last several weeks, I've been relying on meal replacement shakes and protein drinks because I've been too unwell and tired to cook, or do groceries.
One thing I don’t think people talk about enough is how much chronic illness affects partners and carers.

I’ve been in two serious relationships since my diagnosis, and in both cases my partner gradually became my primary carer. That responsibility put enormous strain on the relationship. I encouraged both of them to seek counselling or support for carers, but neither was willing to, or it was too difficult to, or not very useful. Eventually both relationships ended after they sought emotional support elsewhere and had affairs.
I’m not saying that’s society’s fault, or that support services would necessarily have changed the outcome. People are responsible for their own choices. But I do wonder whether better support for both patients and carers might have eased some of that pressure.

My most recent relationship ended at the end of last year. After almost two years of living together, my partner told me the relationship was over, he stopped responding for several days, and then informed me he wasn’t renewing our lease and that I had two weeks to move out.
He had supported us financially while I focused on treatment, something we had both agreed to, so most of our shared furniture and household items legally belonged to him. I left with only my personal belongings.

The biggest problem wasn’t losing the relationship, but that I suddenly had nowhere to go and I had spent nearly all my savings during the relationship as to not be a complete financial burden (dumb I know). With no other welfare assistance, I ended up relying solely on my boyfriend and that pillar of support had completely crumbled in a night.
My entire family lives overseas across several different countries. Moving back wasn’t an option because all of my treatment is based in Sydney. Hospital social workers tried to help, but the only accommodation they could find was temporary housing that still cost around $100 a night.
Thankfully, a friend in Western Sydney converted a storage room into a tiny bedroom for me. It fits a single bed and a chest of drawers, and I’ve been living there for the past six months.

The downside is that it’s around an hour away from the hospital where I receive treatment every two weeks. Because public transport isn’t practical from where I live, I’ve had to rely on taxis or Ubers. Fortunately, my clinical trial covers those transport costs. Otherwise each trip would cost roughly $120–160.

Over the past several months my health has deteriorated even further. My treatment has caused premature menopause when I was 30 and damaged my pituitary gland, leaving me sleeping close to 20 hours a day before it was diagnosed literally two days ago (I'm currently admitted to hospital now as I type). Actually, I’ve been admitted to hospital through emergency three times this year and also spent over a month in psychiatric care after my mental health deteriorated.

Throughout all of this I’ve been referred from one service to another. Hospital social workers, community organisations and various government programs have all genuinely tried to help. The problem is that very few services actually fit my situation.

I’ve been told I’m not eligible for some programs because cancer itself isn’t considered a disability under the NDIS. Even disabilities caused by cancer or its treatment don’t necessarily qualify if they’re not considered permanent under the scheme. Other services have long waiting lists or eligibility criteria that I don’t meet.

I’m receiving the Disability Support Pension now, (it took a lot of effort to get that organised for someone as unwell as me) and it's sorta helping, but it isn’t enough to cover Sydney’s housing costs. Next week I’ll be moving into a room in a shared house closer to the hospital. The rent alone is $500 per week before bills, which means I’ll be eating into my savings just to have shelter closer to the hospital. I have to move because living in Western Sydney is just not sustainable for someone like me who relies on treatment from hospital in Inner Sydney. And although my friend would never say this outloud, I know that I'm adding to her own stress and burdens.
Public housing apparently have 10 year waitlist times. Temporary assistance programs exist but are often limited, short-term or are already full. My hospital social worker eventually apologised and told me she simply didn’t know of any service that could adequately support someone in my circumstances.
I don't blame any of the workers. I genuinely don't think that there's an answer.

Australia seems to assume that younger people with serious illnesses will be supported by family or a partner. But what if your family lives overseas? What if you’re estranged or escaped an abusive situation? What if your relationship ends? What if you simply don’t have anyone who can become your fulltime carer?

I’ve been incredibly fortunate to have good friends. They’ve done far more for me than anyone could reasonably expect. But friends have jobs, families and their own lives. They can’t replace a functioning support system.

It makes me wonder what happens to people who don’t even have that.

Again, this isn’t meant to criticise the doctors, nurses or the medical care I’ve received. I genuinely believe Australia’s healthcare system is something to be proud of.

What I think we’re missing is the welfare system that sits around it. We do a reasonably good job of keeping people alive, but when younger adults with serious illnesses lose their independence without fitting neatly into existing disability or aged care systems, there seems to be very little in between.
Maybe I’ve just been unlucky. Maybe I’ve missed services that are available. But after months of referrals, applications, rejections and waiting lists, it really feels like there are people who simply fall through the cracks.

TLDR: I’m a 32-year-old woman with stage IV cancer who has spent the last eight years undergoing treatment while trying to stay independent. Australia’s healthcare has been excellent, but once I became too sick to work and lost my partner (who was also my primary carer), I discovered there are very few welfare supports for younger adults with serious illnesses who don’t have family nearby. I’ve been referred between countless services, found I’m ineligible for many programs, and have relied almost entirely on friends despite having worked and paid taxes for years. It feels like Australia has built a strong medical system, but not a support system for people who survive long-term with complex illnesses yet don’t fit neatly into disability or aged care services.