Woman, 26, who used to be against euthanasia reveals why she’s now chosen to die
Warning: This article contains discussion of assisted dying which some readers may find distressing.
Barely halfway through her twenties, Annaliese Holland is confronting a reality few people her age could imagine: she knows her life will end within months.
The Adelaide woman has been approved for voluntary assisted dying (VAD) in South Australia, after years of living with a rare and debilitating autoimmune condition.
She was once opposed to assisted dying, but Holland now says her experiences of living with chronic illness has changed her views on euthanasia and the right to choose how life ends.
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Holland was diagnosed with Autoimmune Autonomic Ganglionopathy (AAG) at the age of just 18.
The condition causes the immune system to attack the nervous system, which in her case, has left her facing severe pain, persistent vomiting and serious complications.
Holland says much of her life is now spent in bed or on a sofa, sometimes up to 17 hours a day, and will soon need her teeth removing as her jaw is dissolving.
She can't eat or drink in the usual way, and receives her nutrition intravenously, however there's a terrifying problem.
Holland says she is currently using the last accessible vein, after all viable others became infected or blocked.
"If I get a clot in it there's no way to feed me and basically I will die through starvation," she told ABC News.
She said she has chosen the date she will die, but has chosen not to share it to protect her family.
"I went through this with one of my gorgeous friends, and I saw the outcome of what happens when the public knows, it was messy," she recalls, and she wants to save her family any unnecessary pain.
For Holland, she said for life, 'quality is so much more important than quantity.'
A change of heart over assisted dying
She confessed that she used to be anti-voluntary assisted dying, but that changed as her illness progressed.
"It wasn't until I got sick that my views on it completely changed," she admitted.
A significant moment came when she became close to Lily Thai, another young woman living with AAG.
Thai chose euthansia, and Holland was with her during the process, and before then hadn't even known it was an option in Australia.
Going through that alongside her friend means she now understands assisted dying in a new way.
Last year, Holland's health deteriorated dramatically after major surgery when she developed sepsis and had to be resuscitated.
It was then, she says, that her fear of continuing to live with worsening illness became greater than her fear of dying.
Her family initially struggled with her decision, and Holland recalls telling her father that she had had enough.
Eventually, he came to support her, recognising the extent to which her illness affected not only her but those closest to her.
She has created a personal bucket list of experiences she wants to complete, affectionately called the F*** It list.
One wish was wearing a wedding dress, something she has already celebrated with friends and loved ones.
She also hopes to witness a birth and hold a newborn baby, which is particularly sad as she had always imagined becoming a mother herself.
"Don't wait until you're too sick to start living"
In a recent Instagram post, Holland wrote: "I spend most days trying to stay positive and not let my illness define me, because I am so much more than my diagnosis, but sometimes it’s okay to not be okay.
"Especially when this is my reality, day in and day out," she continued.
"Illness is often romanticised online, but I want people to understand the suffering that can exist behind closed doors," stressed Holland.
"For the past 12 years, I’ve hidden so much of my journey, I spent years hoping life would return to normal and ashamed of the tubes, scars, bags, and medical reality. I even hid my ileostomy for six years before I found the courage to talk about it."
As time goes by, her feelings have become more complicated: "Right now, things are really hard. The truth is, I don’t want to die. I want to live."
"But I don’t want to suffer like this," she added. "That’s why Voluntary Assisted Dying matters so deeply to me."
"No one should be forced to endure unbearable suffering when there is no hope of recovery."
She urged her followers: "Please don’t wait until you’re too sick to start living. Do the things on your 'f*** it' list. Tell the people you love that you love them."
"None of us are promised tomorrow," she added.
Above all, she says, "I just want people to remember me as me, not my illness."
For advice, support, and more information, you can contact the nurse-led specialist team at Compassion in Dying via their helpline 0800 999 2434. You can also email them at [email protected].
Additionally, if you're experiencing distressing thoughts and feelings, the Campaign Against Living Miserably (CALM) is there to support you. They're open from 5pm–midnight, 365 days a year. Their national number is 0800 58 58 58 and they also have a webchat service if you're not comfortable talking on the phone.
Topics: Health, Australia, Mental Health
Jen Thomas