OVER a 20-year period, more than 200 doctors missed it.
They told Jamie Green she was overweight. They told her she needed to diet. She needed to exercise. And when she returned with no positive signs of weight loss, they told her she was a liar.
As a teenager, she was a size 6, and was involved in a number of sport and dance activities like her peers.
But some days, her legs felt like they had concrete in them.
Progressively, she put on more weight, until at the age of 23, she had liposuction which she thought might help.
It made things worse. Only six years ago, aged 33, she was diagnosed with Lipoedema, a disease only recognised by the World Health Organisation in 2019.
Ms Green is now wheelchair-bound, able to walk short distances of about 10-15 metres. It takes her two hours to shower. She is in the hands of a carer and makes frequent trips to medical appointments.
Three years ago, she ate a corn chip – just one – at a party and was thrown into debilitating pain which resulted in hospitalisation.
“I was a youth worker for 12 years, and I worked more than 100 hours a week. I loved my job,” she said, now unable to work and on NDIS.
“The hardest thing in the world to come to terms with has been an inability to be able to earn an income.”
Ms Green is trying to help others. She’s part of a group of women, Lipoedema Warriors south of Brisbane, does outreach at hospitals, and is now spreading awareness of the disease to a wider community as part of an awareness photoshoot.
Sadly, part of her job has been to educate those who are her carers – doctors and nurses who are unaware of the impacts of the disease and that she can’t be treated in the same way as other obese patients.
“They’ll check in my skin folds for bed sores unaware that they could tear the skin,” she said.
“They’re amazing, but they don’t know that when treating people like me, they have to do things a bit differently.”
If educating medical staff is the first step, the public seems a long way off.
“I see people looking at my legs and I know they are judging,” she said. At shopping centres and supermarkets, she has been verballed by strangers while trying to mobilise her wheelchair.
Growing up, the abuse has messed with her self-esteem, messages from doctors, friends and family that she must be doing something wrong – on the wrong diet, doing the wrong exercise.
At least now she knows what’s wrong, and she’s able to share her experiences with others.
“I have good days and bad days,” Ms Green said.
“I wake some mornings in tears and I don’t even know why. But I keep going.”
Ms Green is on strict dietary measures to ensure her condition doesn’t worsen. In two weeks, she’s starting a psychological trial to help with the extreme stress which comes with the disease.
The photoshoot was organised by Brisbane-based Lipoedema expert Dr Chris Lekich.