After years of debilitating pain caused by a rare disorder, a 25-year-old woman has reached for a life-changing choice – one her loved ones never expected to face
The decision didn’t come easily but it brought the relief she was seeking for years(Image: annaliese_holland/Instagram)
She’s only 25, yet her life has been consumed by an unrelenting autoimmune disorder so rare it’s barely understood – and it’s pushed her to a breaking point, wanting to end her life by euthanasia.
Annaliese Holland, from Adelaide in South Australia, has known severe pain since childhood, spending most of her early years in hospital with an illness doctors couldn’t identify. As she grew older, the unknown condition worsened, leaving her in horrific pain every single day, along with constant nausea and vomiting.
But it wasn’t until she turned 18 that she finally received the diagnosis she had searched for since she was young. After moving from paediatric care to the adult ward, doctors told her she had Autoimmune Autonomic Ganglionopathy, a rare neurological disorder that damages the nerves responsible for heart rate, blood pressure, digestion and urination.
Annaliese says she’s been ‘surviving, not living’ for years(Image: annaliese_holland/Instagram)READ MORE: ‘I thought my toddler had a cold – but worrying symptom proved it was diabetes’READ MORE: ‘I lost two sisters to sickle cell disease – more awareness could’ve saved their lives’
And the revelation that should have brought clarity also came with devastating news: her illness was already terminal by the time she reached 22.
Despite defying the odds, she continues to live in horrific pain. Annaliese now has multi-organ failure and has survived life-threatening sepsis 25 times. Years of heavy medication have left her with severe osteoporosis, weakening her bones and making them extremely fragile.
On top of that, Annaliese has fractured her spine in four places, split her sternum and come dangerously close to crushing her heart and lungs.
Along with daily nausea and vomiting, her bowel often backs up. She explained to News AU: “My bowel acts as if it’s blocked, but there’s nothing actually blocking it. It’s just the nerves don’t work so, as gross as this is, my stools would back up so much that I would throw it up or drain out my tummy.”
Her long-term steroid use has also caused her bone tissue to die, turning her teeth black before they gradually fell out and for the past decade, she has relied on total parenteral nutrition (TPN), taking all nourishment through IV lines.
“I had feeding tubes placed in me, and I was still vomiting, and then we discovered that my stomach wasn’t emptying, so I was put on TPN,” she told News AU, “because of the line straight into your bloodstream, if you get an infection, it turns to sepsis really quickly, which is very, very dangerous.”
Years of hospital stays and heavy treatment have taken a huge toll on her body(Image: annaliese_holland/Instagram)
Everything she endures daily has taken a severe toll on her mental health. She watches on as she misses major milestones – graduations, birthdays, while her friends go on to have babies and get married. To Annaliese, her life isn’t moving. She feels stuck in time.
“I’m not living. I’m surviving every day, which is tough – I was so miserable,” she added, “You can’t change it, so you have to just deal with it, really. Even though there are beautiful moments in my days, they are exhausting and long. I’m in chronic debilitating pain.”
And while she tries to hold on to those beautiful moments, she told her family she wants to die on her own terms.
But even through the pain, the decision didn’t come easily. It followed the day she looked at herself in a hospital mirror and no longer recognised the person staring back.
“It wasn’t me and I was so exhausted,” she recalled., “life for me now is getting up each day, doing what I need to do medically, taking the painkillers, trying to get through the day, just to go to bed and do it all again.”
The news also deeply affected her family. Her mother, Armanda, sees the daily battles her daughter faces and still hopes for a miracle. Her father, Patrick, told News AU he has watched her fight through every setback.
“Every time she goes to the hospital, she fights for her own life,” Patrick said, holding back tears, “the amount of times Annie has been in hospital and on her deathbed… to have to sit there and watch her go through it.. but she is amazing.”
It took a while for a dad to come onboard with her decision(Image: annaliese_holland/Instagram)
Annaliese also recalled a night speaking to her dad in the kitchen, admitting she had had enough to which he asked, “So you’re giving up?”
He finally came to terms with her decision after a hospital visit where she was resuscitated by doctors. She pleaded with him to let her go, telling him she wouldn’t hate him if he agreed.
“I said, ‘If this happens again, I don’t want anything. And please know that in my heart, you letting me go and saying no to treatment… I’m happy with and that’s what I want’” she said through tears.
“He turned to me and goes, ‘I don’t know how you do it, and I totally understand that you’ve had enough’.”
Eventually, Annaliese was approved for voluntary assisted dying (VAD) three weeks after meeting psychologists and completing her assessment. The approval felt like a weight lifting from her shoulders – one she had carried for years.
“I think it’s so weird to be happy, but I was so happy when I found out I was approved, I was crying,” she said.
“It’s hard because for me, I am in pain and then I am at peace, but then I put the pain onto my family. You have this battle in your head of not wanting to hurt them, so I will put some thought into how it will happen.”
Her illness has left her missing milestones most people take for granted(Image: annaliese_holland/Instagram)
Annaliese says she no longer wants to wake up each day with anxiety about the pain coming.
“The pain of starving to death when they can’t feed me anymore, or the horror of sepsis. Knowing I can go when the time is right is just a huge relief,” she explained, “I feel so lucky that I do have this choice.”
“It’s one of the bravest things you could ever do, to say I want VAD. It’s not giving up. You’ve had enough, and you fought bloody hard.”
However, Annaliese will not be able to pursue euthanasia as she initially hoped, because it requires the person to take the prescribed medication themselves and is illegal. Instead, VAD and Medical Aid in Dying (MAID) are legal options across parts of Australia – including South Australia, for terminally ill adults who can make their own decisions.