Short film captures tragic life with Lyme disease

Imagine suffering with a disease some medical professionals say is non-existent in Australia. This is the reality for Karen New who has suffered from chronic Lyme disease for 25 years ever since being bitten by a tick.

Her story has been beautifully documented in a short film by Queensland College of Art photojournalism graduate Elise Searson.

Elise, who graduated last year, followed Karen on her journey to Malaysia for radical hyperthermia treatment as a last ditch attempt at a cure.

What followed was a moving experience; one Elise says will stay with her for many years to come.

“Documenting Karen’s story was both confronting and gut wrenchingly distressing,” she says.

“It gave me an infinite view on a very real struggle that many people with Lyme on a daily basis.

“Being alongside Karen and her partner Tony for the treatment in Malaysia gave me a greater understanding to why Australians are seeking treatment overseas for Lyme disease.

“I learnt that successful story telling through documentary would be impossible without trust, empathy, respect and an honest passion for humanity.”

Elise says that after spending years among the Lyme community, she feel strongly about the non-negotiable need for government recognition and compensation for people like Karen who have been neglected in the earlier years due to lack recognition – and who are now are most likely incurable.

“With public pressure comes awareness, followed by education and recognition, hopefully with more projects like this we are getting closer to the recognition, which will save lives and prevent a large range of social impacts including family break downs, unemployment, financial crisis and suicide,” she says.

She says studying at the QCA has guided her from “just taking photos to becoming passionate about making stories through mixed media”.

“It’s the best and hardest decision I ever made.”

One of Elise’s portraits of Karen was recently awarded Bronze at the College Photographer Awards in the US.

“It’s a shocking image – taking Karen from feeling vulnerable to empowered,” she says.

“It’s never easy to show the dark side of your personal life, it takes a huge amount of courage,” she says.

“But I’m grateful that Karen let me into her life. I’m in awe of her determination and bravery.”

Elise will continue to be in contact with Karen and document her continuing journey to good health, being the ultimate outcome.

(Source: Griffith University)