Annaliese Holland, 26, reveals heartbreaking reality behind her decision to access voluntary assisted dying

Annaliese “Annie” Holland is watching her friends get engaged, married and start families — milestones she knows she may never experience herself.

With her long blonde hair, blue eyes and warm smile, the 26-year-old Adelaide woman might appear to have her whole life ahead of her.

But behind her smile is more than a decade of suffering that has led her to make the heartbreaking decision to access voluntary assisted dying (VAD).

A decade of suffering

Holland was just 13 when she first became unwell, and later underwent an experimental procedure involving Botox injections into her pelvic floor to treat ongoing symptoms.

She said she suffered a seizure after waking from the procedure, and her health deteriorated rapidly from that point.

“That’s when my bowels started to shut down and my gut and my bladder and I became really sick,” she said on the Life Uncut podcast.

However, Holland acknowledged it was never established whether the treatment caused her condition.

It was not until she turned 18 that she was diagnosed with autoimmune autonomic ganglionopathy (AAG), a rare condition that affects the nervous system responsible for involuntary bodily functions, including digestion, heart rate and blood pressure.

While the condition is not necessarily terminal, Holland said her diagnosis came too late to prevent severe complications.

“I was already in multi-organ failure,” she said.

“We can’t treat it because there’s nothing we can do anymore because those organs are not working.”

For about a decade, Holland has spent more time in hospital than at home, unable to eat a normal meal and relying on intravenous nutrition to survive.

She lives with a stomach drain and has described being able to taste food without digesting it, while dealing with debilitating pain, nausea and frequent vomiting.

“My pain is probably the most debilitating symptom and it’s getting harder and harder to treat,” she said.

Some days, she vomits up to 15 times.

Holland said steroids used during her treatment also left her constantly hungry, despite being unable to eat.

“It’s not a nice combination,” she said.

Years of treatment have also taken a devastating toll on her body.

She has suffered repeated episodes of sepsis, partially lost vision in one eye following a fungal infection and developed osteoporosis that has left her bones extremely fragile.

Holland said she was grateful to have enjoyed a relatively normal childhood before becoming sick, but knowing what life was like before her illness also made her suffering harder to bear.

“I know what I’m missing out on. And I know how life should be and could be,” she said.

“I think that makes it harder, because at least when you have something from birth, you don’t know any different. But for me, I do know different.”

Moment of realisation

By the time Holland turned 21, years of invasive treatments and medication had left her struggling to recognise herself.

She had lost weight and hair, while steroids caused severe swelling in her face.

“I was so underweight. My cheeks and face were so puffy from steroids, and I just didn’t look like me,” she said.

“And I’d spent, at that point, six years or whatever, in and out of the hospital not living.”

At one point, Holland discovered she had been walking around with a fractured hip without realising it.

Ahead of surgery to repair the injury, an anaesthetist warned her that attempting CPR could fracture her already weakened sternum and cause further serious injuries.

After surviving the surgery, she looked in the mirror and barely recognised the person staring back.

“I just turned to my parents and my doctors, and I said, I think it’s time to start palliative care because I don’t want quantity anymore, I just want quality,” she recalled.

All I was doing was living day by day, fighting and fighting and fighting, hoping for that miracle, hoping for things to change. And it just didn’t.

Holland said seeking palliative care was not about giving up, but about finding some comfort after years of suffering.

Her father initially struggled with her decision, asking whether she was simply “giving up”.

“I hate when they say this, that palliative care is just giving up because it’s absolutely not just giving up at all,” she said.

“If someone is asking you for that, that’s because they are suffering immensely, not because they have given up.

“Everyone has a breaking point when their illness becomes too much, and I think it’s one of the bravest decisions you can make.”

Holland said she had survived sepsis about 25 times, including a particularly severe episode last year when she had to be resuscitated.

She recalled telling her dad she could no longer endure the constant suffering.

“I just said, ‘Dad, I can’t, I can’t do this anymore’,” she said.

“And he just looked at me and he said, ‘I understand this isn’t fair. It’s your turn to choose, and I can support you as much as I can, but I totally understand it’.”

For Holland, the distinction between being alive and actually living had become painfully clear.

I’m not living. I’m simply just surviving at the moment.

A heartbreaking decision

After years of fighting for her life, Holland began speaking publicly about her experiences, hoping to spare others the suffering she and her family had endured.

“There has to be at least some good out of it,” she said.

She questioned why she should take her story to the grave when it could help someone else avoid going through the same ordeal.

Her advocacy also led her to Lily, a 23-year-old woman who had the same rare condition.

The pair quickly formed a close friendship, bonding over their shared experiences of illness and years of fighting to be heard by medical professionals.

Lily had decided to access VAD and asked Holland to be by her side when the time came.

Holland admitted she initially struggled to understand how her friend could make such a final decision.

“I remember looking at her and I said, how do you know? How do you know when is enough?” she recalled.

I go for a walk down the beach and I watch the sunset … and I’m like, how? How can you not want another day? How can you not want another sunset?

Lily’s response was simple: “You’ll know when you know.”

When the day arrived, Holland was among eight people in the room as Lily underwent VAD.

Having lost five friends to similar illnesses, Holland said witnessing Lily’s final moments was a profoundly different experience.

“It was just such a beautiful way to go,” she said.

“It seemed very peaceful.”

She promised to keep her friend’s legacy alive and continue advocating for people with rare illnesses.

But even after witnessing Lily’s experience, Holland struggled with the prospect of making the same decision herself.

“Every time I go in for a procedure or a surgery, I sometimes hope that I just don’t wake up from it and that that will be the last time,” she said.

Despite her fears, Holland said she reached a point where her suffering was becoming increasingly difficult to endure.

“I don’t think I could do another six months of how I am,” she said.

The life she’ll never live

Despite having made the decision to access VAD, Holland admitted the prospect of dying was daunting.

“To be honest, it terrifies me so badly,” she said.

But it is the future she may never experience that weighs most heavily on her.

“Being 26, everyone’s engaged, getting married, having children,” she said.

“It’s so good and it makes me so happy. But also it is soul crushing.”

Holland broke down as she reflected on the experiences she would miss out on, particularly the chance to become a mother.

“It’s probably the fact of the future that I haven’t lived,” she said.

As you get older, you look back at life. You can be like, I lived a good life … you’ve got memories. I don’t have that. The fact that I don’t have the chance to be a mother or have those things. It’s probably the fear that sucks the most.

Determined to experience as much of life as possible, Holland has put together a bucket list of 20 things she hopes to achieve.

Many are milestones other young people take for granted.

Although she once convinced herself she never wanted to get married, Holland realised it was partly a way of protecting herself from the disappointment of knowing she might never have the chance.

She has since fulfilled a dream of wearing a wedding dress and having photographs taken with her family.

Holland also witnessed the birth of a baby after a woman who heard about her wish invited her into the delivery room.

But as her health continues to deteriorate, she fears she may be running out of time to complete the rest of her list.

“For me it’s just about doing things that I feel like make me feel like I’m living and not just surviving,” she said.

Living on her own terms

Holland revealed she had gone about six weeks without intravenous nutrition at the time of the podcast recording, as doctors became concerned the treatment was causing more harm than good.

For years, she had relied on a drip for up to 16 hours a day to receive the nutrients her body could no longer absorb normally.

But repeated infections had left her with increasingly limited access to suitable veins.

“It’s kind of also prolonging my suffering,” she said.

Holland said her condition had worsened significantly in recent weeks, leaving her frightened of losing her independence.

“What’s scaring me at the moment is the rate at how quickly it is going downhill over the last, probably a month or so, and knowing that it’s only going to get worse and not better,” she said.

“I don’t want to go not being who I am.”

But she also worried about the impact her death would have on her family.

“Even though it’s ending my pain and I know I’m going to be pain free, it’s putting pain onto someone else in a completely different way,” she said.

“And I think that’s the hardest part.”

Holland said knowing she had access to VAD had helped ease some of her anxiety about the future.

“I’m not going to be left suffering like I have been. I get to choose that,” she said.

In South Australia, VAD is available to eligible adults with an incurable, advanced and progressive condition expected to cause death within six months, or 12 months for a neurodegenerative condition.

Applicants must undergo assessments by two medical practitioners, demonstrate they have decision-making capacity and be acting voluntarily without coercion.

Holland said she wanted more people to understand the process and remove the stigma surrounding discussions about death.

“I think it’s just topics we need to talk about in order to not be scared.”

A message to others

Having spent much of her life in hospital, Holland said she hoped others would learn to appreciate the lives they had while they still could.

“I think we’re all terminal ... we all don’t know what’s going to happen tomorrow,” she said.

“You could walk out of here and get diagnosed with cancer. You can walk out of here, get hit by a bus.”

She urged people to slow down, cherish their relationships and show greater kindness to those around them.

“Check in on your friends, check in on your loved ones, hug them, tell them you love them every single night,” she said.

“In the midst of rushing to create this future, we forget about living now.”

Above all, Holland hopes her story will help others facing serious illnesses feel heard and prevent them from enduring the same struggles she and Lily experienced.

“I don’t want to be known as the death girl or VAD girl or anything like that. I want to be seen as Annaliese,” she said.