MILLIE'S MEDICAL NIG HTMARE 'I'M GRATEFUL TO BE ALIVE'

Accused of having an eating disorder for years, this Dunedin woman finally has a correct diagnosis

- Cloe Willetts

Millie Hardiman struggles to talk about the time she was diagnosed with anorexia nervosa and taken to an eating disorder ward, where she contracted norovirus and was woken every half hour to check she was breathing.

Despite entering the mental health hospital with severe stomach pain and nausea, made worse by consuming food or even a sip of water, she was forced to eat and drink.

Th e ordeal left Millie, then 17, with complex post traumatic stress disorder, sleep paralysis and worse health. But the most concerning thing was that she didn’t actually have an eating disorder.

After a lifetime of fighting to be heard by doctors – who misdiagnosed her ongoing symptoms as chronic fatigue syndrome, an autoimmune disease and then anorexia – Dunedin-based Millie was finally diagnosed with Ehlers Danlos syndrome (EDS) in 2019. It came a year after she was sectioned under the Mental Health Act and made to spend 10 weeks at Princess Margaret Hospital in Christchurch.

EDS is a rare and incurable genetic condition that affects the connective tissue and production of collagen, which acts like a “glue” in the body to hold everything together. Millie has the hyper mobile sub type, which severely impacts her gastrointestinal motility. For most of her life, she has lived with chronic pain and fatigue.

“Unfortunately, EDS and its complications are poorly understood in New Zealand,” explains Millie, 22, who also has mast cell activation syndrome, which causes severe allergy-like symptoms.

“I was gaslit and told my symptoms weren’t real. I was stereotyped as a young white female and told I had an eating disorder.”