Annaliese Holland, a 26-year-old South Australian woman, is preparing for the possibility of voluntary assisted dying (VAD) after a decade-long struggle with a rare neurological disorder. Her condition, autoimmune autonomic ganglionopathy (AAG), affects involuntary bodily functions such as digestion, blood pressure, and heart rate. Holland was diagnosed at 18 and told her illness was terminal at 22, but now fears she has reached the limits of her endurance.
Recently, Holland stopped receiving intravenous nutrition, which had sustained her for over ten years. This decision marks a step toward accepting the end of her life, as daily existence has become increasingly exhausting due to ongoing complications, including sepsis. "I haven't had any form of nutrition in, I think, one and a half months now," Holland shared on the Life Uncut podcast. "Every day is exhausting because I don't have many lines left, and because of sepsis and all the other things going on."
Holland expressed her fear that her condition is rapidly deteriorating. "I have said that I don't think I can do another six months of how I am," she stated, adding, "What's scaring me at the moment is the rate at how quickly it is going downhill, especially over the past month or so."
Despite being approved for VAD, Holland admitted to being terrified of death and conflicted about the pain her decision will inflict 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. I think that's the hardest part," she said.
Her reliance on total parenteral nutrition (TPN) for nearly a decade became unsustainable. The treatment requires access to large veins, but repeated infections have limited available sites, with doctors suggesting the treatment itself was causing more harm than good. Holland also desired freedom from the medical equipment that has been a constant presence in her life.
Under South Australia's VAD legislation, eligible patients must have an advanced, progressive condition expected to cause death within a specified timeframe. Holland acknowledged that an acute complication of her illness might claim her life before she makes the choice to use VAD.
Holland's health issues began at age 11 with glandular fever, leading to a diagnosis of endometriosis by 13. After a procedure for pelvic floor dysfunction, she experienced severe complications, including an inability to urinate, which preceded a period of intense illness. Her digestive system shut down, leading to her reliance on TPN and the progressive failure of multiple organs.
She underwent extensive testing throughout her teenage years, but her condition remained unexplained until 2018, when specialists diagnosed her with AAG. Despite treatments like plasma exchange and high-dose steroids, she continued to suffer serious complications, including sepsis and avascular necrosis, a condition causing bone tissue death.
Her illness dashed her aspirations of becoming a paramedic. "I used to be really fit. I got into para-science, I wanted to be a paramedic. But suddenly, my future was gone. Instead of making plans, I was just trying to survive the next day," she recalled.
In 2022, Holland was informed that no further treatment options could reverse her decline. She entered palliative care, feeling isolated and hopeless. Her public advocacy for chronic illness patients led her to connect with others, including a friend with AAG who chose VAD at 23. "No young girl should have to go through that. Before she died, I promised her I'd keep raising awareness, and I will," Holland said.
The prospect of dying at 26 is terrifying, amplified by a societal reluctance to discuss death. Holland expressed grief for the life she will not experience and the milestones her peers are reaching, such as engagements, marriages, and starting families. She also finds dating difficult, balancing openness about her condition with the emotional toll it can take on potential partners.
Holland remains torn between the desire for relief from suffering and the profound impact her death will have on her loved ones. Despite these challenges, she continues to speak publicly about chronic illness, palliative care, and death, hoping to reduce the isolation experienced by others and that her life, however altered, will have meaning for someone else.