'At 21, I realised I was terminal. At 25, I'm choosing to die on my own terms.'

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Annaliese Holland was 21 when she made the first enormous decision of her life and told her medical team she didn't want to be resuscitated.

The South Australian was 25 when she made the second; she wanted to die on her own terms, through voluntary assisted dying (VAD), which the state introduced in 2023.

But before Annaliese goes there are life milestones the terminally ill woman wants to achieve — a bucketlist if you will.

"They range from small things to big things," Annaliese told Mamamia. "I want to try on a wedding dress. I want to see a baby be born. I want to hold a baby.

"To be honest, that's probably the only thing that I have a lot of hate for or anger for is that I don't have the chance to be able to have that future. These are things everyone takes for granted that they get to experience.

"I've always wanted to have a family of my own."

Annaliese Holland spent most of her teenage years inside hospital walls. Image: Supplied.

Annaliese speaks with a wisdom far beyond her 25 years. She has spent most of her teens inside hospital walls.

At 12, she got glandular fever. Soon after that she was diagnosed with endometriosis, and has struggled with recurrent UTIs.

"At first we thought endometriosis was maybe causing everything," Annaliese explained.

"Things got worse when I had this exploratory procedure done. They placed Botox into my pelvic floor and at the time we thought this was gonna be my saviour. When I woke up from that I had a seizure, was unable to eat and unable to go to the toilet.

"We're not sure if it's the catalyst, what caused it, or if, there was something there and it triggered something to be worse."

From there, Annaliese's condition spiralled.

"I was very sick," she said. "My organs just kind of started failing and I was admitted into hospital.

"During that admission, I had bowel obstructions, my bowels shut down, and they were unable to feed me.

"I basically lived inside the hospital after that."

Annaliese has since survived sepsis 25 times. She has experienced a level of pain that many can't even begin to imagine. Has to be fed through a feeding tube.

"I've been in a place where I've been screaming for hours in a bed and it's awful," she said.

"At the moment I keep getting sepsis. If anyone's had sepsis, it's an awful, awful, awful feeling. It's not a nice way to die and that's always a fear."

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'When we finally got the name, it was relief.'

When Annaliese was 18, she finally recieved a diagnosis — Autoimmune Autonomic Ganglionopath — known as AAG for short.

AAG is an extremly rare auto-immune disease, that causes an individual's immune system to attack the autonomic nervous system. In the United States, it is estimated that approximately 100 people are diagnosed with AAG each year.

"When we finally got the name, it was relief," Annaliese said. "The unknown was scarier than knowing. At least we had something to research. At least there was a chance."

But the diagnosis had come too late for treatment or intervention.

Annaliese was eventually diagnosed with AAG, a rare disease which causes an individual's immune system to attack the autonomic nervous system. Image: Supplied.

Even with a name and time, treatment would have been complicated and funding hard to secure.

After years in hospital, Annaliese's body was too fragile to take it.

Her team once attempted plasmapheresis, a procedure that filters the blood to remove harmful antibodies, but she was too sick for it to prove viable.

"My body was in such a bad way that I only was able to go through a treatment of it, and it almost killed me," Annaliese said.

Her veins, scarred by years of central lines, became unusable. She has only one left now.

If she loses it, she will starve to death because her feeding tube can't be placed.

"I've come to terms with dying," she said. "I've been sick for so long.

"But starving to death, that's my biggest fear."

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Becoming terminal at 21.

When Annaliese was 21, she sat down and broke her hip.

Osteoporosis, caused by long-term steroid use to treat inflammation, had weakened her bones.

Her osteoporosis is at such a severe stage that during pre-surgery discussions to replace her hip, an anaesthetist sat her down for an incredibly difficult conversation.

"She said to me, 'we would not suggest you be a non-CPR,'" Annaliese said, adding the doctor explained CPR could crush her chest and even lead to her heart being perforated.

That day, she signed a do-not-resuscitate order.

"That was the day that terminal was kind of first mentioned," Annaliese said. "There is actually almost potentially no way of keeping me alive."

Annaliese's body is now too frail for most treatments. Image: Supplied.

After surgery, Annaliese saw herself in a mirror and didn't recognise the person staring back.

"I just stood up in the recovery and I looked at myself in the mirror and I just had a massive breakdown to my family and doctors. I didn't recognise who was looking back at me anymore," she said.

"I was just a complete shell of who I was. I'd lost every little bit that made me me.

"I just turned to my team and that's when I told them I wanted palliative care. Quality was much more important than quantity at that point."

At 21, Annaliese was moved into hospice.

The friend who prepared her for the road ahead.

Annaliese's decision to pursue voluntary assisted dying was shaped, in part, by a friend named Lily Thai, another young woman with AAG.

Lily was the one to reach out to Annaliese after learning her story. Annaliese was at first sceptical of the message, explaining she was "being a bit careful."

But years of being sick in adolescence had isolated her. Friends had drifted. Social worlds had moved on. Annaliese shut herself away thinking she'd return when she "got better."

But Annaliese didn't, and when she learnt that Lily had been moved to hospice, she decided to meet her.

"I turned to my mum and I went, 'Oh, you don't bullshit about that. Let's go to the hospice tomorrow,'" she said.

"We went and saw her the following day and brought her some blankets and, we just had this beautiful connection."

The pair formed a fast, profound bond. Lily chose to pursue voluntary assisted dying soon after it was legalised in South Australia, and opened up to Annaliese about the process.

"At the time I hadn't known much about voluntary assisted dying, because it had just become available," Annaliese explained.

"Lily was the bravest girl I've ever met. She was so at peace with dying. We spent the next months just seeing each other every single day and talking."

Annaliese was there as Lily passed.

"I held her hand and she underwent it. I kind of have this weird thing of being on both sides," she said. "I think that it was the universe's way of preparing me, I still think, but yeah, she underwent it and I watched her peacefully pass.

"I think it just changed my way over the next couple of years."

In the years since, as her own quality of life deteriorated, Annaliese began to understand the peace she saw in Lily.

Choosing her ending.

This year, after months in hospital and a body increasingly unable to cope, Annaliese told her nursing team she wanted to formally begin the voluntary assisted dying process.

Her decision came after a particularly "nasty" resuscitation.

"I never understood how people could be at peace with death," she said. "And I just remember someone telling me, 'you know.'

"When I was in hospital and all of a sudden when I was being resuscitated, I was more at peace with dying than I was surviving.

"My whole view on everything changed."

The voluntary assisted dying process isn't simple.

"It's not an easy process. People think you just ask for it and get it. You don't," Annaliese said.

"It is a very complicated process and there's very strict rules."

However, things moved quickly for Annaliese. She was eligible. Her case was clear.

"Three weeks later I had signed forms," she said.

Annaliese has decided her story shouldn't die with her. She trained herself to walk three kilometres to raise money for her local hospice — $15,000 in the end — and has begun speaking publicly about her story.

Annaliese raised more than $15,000 for palliative care. Image: Supplied.

"I kind of thought, why am I wasting my story by putting it 10 feet underground," she said.

"It was kind of a bit of a relief to finally put it out into the world. It was nerve-wracking but also a little bit of a relief."

If there's one thing Annaliese would like to clear up before she goes, it's the misconception that voluntary assisted dying is a form of suicide.

"The thing for me is I'm dying anyways, and I think that people don't understand that. It's just me taking my hands into that moment that I don't have to suffer," she said.

"I'm going to die anyway. It's not changing anything. There's no, miracle treatment. My body is, is done. It's not something that, I'm making out of a mistake that there could be a cure tomorrow.

"For me, the reality is I probably won't ever get the chance to use VAD. (The disease) probably will get me before then."

For the time she has left, Annaliese lives day-to-day with a mantra.

"Sh*t happens," she said. " It's our family's favourite mantra."

Feature image: Supplied.