Wallsend's Kristy McIntosh has a painful fat syndrome that is not caused by obesity or overeating.
Lipoedema is a connective tissue disorder that involves fat deposits in the upper and lower limbs.
"I believe I've had it since adolescence because it is a hormonal thing. I have it in my arms and legs," Mrs McIntosh, 43, said.
"For many years I was called fat and lazy. I have carried weight since I was a teenager."
She recalled that it was "hard to wear school shirts".
"Even now, I cover my arms. I don't wear singlet tops. I worry about what people say and think because I have been ridiculed," she said.
She spoke to the Newcastle Herald to raise awareness about the condition in Lipoedema Awareness Month and help "others in this situation".
"The day I got diagnosed, I had tears of joy because I realised I didn't do this to myself," she said.
Lipoedema Australia says the condition typically affects the thighs, buttocks, lower legs and sometimes the arms.
As the condition was often not diagnosed until later stages, co-morbidities and psychological issues were prevalent among patients.
While the disease has genetic factors, therapist Sal Petrassi believes stress and trauma are linked to it.
Mrs Petrassi, who also lives with the disease, wants to help change misconceptions about it.
She said lipoedema did not respond to traditional weight-loss methods.
"It's often not recognised as a medical condition. Some doctors are resistant to it completely," she said.
"They will say you have excess weight, you need to lower your calorie intake and exercise more."
Lipoedema Australia chairperson Jen Bartlett said "it's most commonly misdiagnosed as obesity and lymphedema".
"There's no federal funding for it," Mrs Bartlett said.
"There's a huge amount of burden to the individual having to manage the condition and advocate for themselves."
Mrs Petrassi learned she had lipoedema while studying the disease.
"I didn't know I had it. I was an athlete and fit," she said.
Her legs had a column-like appearance "with a cuff at the bottom and a bubbly effect", which were typical appearances of the disease.
"When you put weight on, it may progress," she said.
She said liposuction was a "way to debulk, reduce pain and start from a new baseline", but it can be costly.
"If you live the same lifestyle, it will come back. You need to make changes and adapt new healthier routines and self-care techniques to stop it progressing," she said.
Mrs Petrassi wears medical-grade compression garments every day.
"It helps circulation and the lymphatic system," she said.
She said the condition was "resistant to diet and exercise".
"With lipoedema, the fat cells are affected and swollen to a point where it's blocking the lymphatic system," she said.
"It's a painful inflammatory condition."
Mrs Petrassi treats patients for the condition through her Belmont clinic.
"Treatment involves helping the lymphatic system to move again," she said.
"It's not like the blood system that has the heart to pump it through. It needs massage and muscle contraction."
Doing exercises in a pool is one method to help the condition, as it improves circulation.
Mrs McIntosh said walking in the water and aqua-aerobics helped her feel better.
