Clinical psychologist Dr Nicola Brown said she thought her work with clients had given her an understanding of chronic pain, until she was struck with the pelvic condition pudendal neuralgia three and a-half years ago.
She is among the national and international lineup of those set to speak at the annual New Zealand Pain Society (NZPS) conference taking place in Dunedin from today until Sunday.
"It’s really hard to capture for people how exhausting chronic pain is ... it just takes an enormous amount of energy doing normal things," she said.
"I realised I didn’t get it until I actually had it."
"One thing that makes it very hard for people to understand chronic pain is that it’s invisible, so people can be looking fine but feeling dreadful."
Her pudendal neuralgia came on very suddenly, and was a pain in the proverbial — she probably had the biggest collection of cushions in Dunedin, she said.
Former passions such as biking, dancing and skiing were no longer possible without triggering a massive pain flare up.
However, she had turned to comedy — "my way of dealing with difficult things" — and performed her stand-up show Space Invaders as part of the Dunedin Fringe Festival this week.
A two-year battle with ACC followed the onset of her condition, before her claim was approved on the third attempt.
"It is a massive thing because they tend to not like to cover gynecological injuries, so it’s actually quite significant that I’ve finally got it through."
After seeking the aid of a specialist in Brisbane and sticking to a regular half-hour physiotherapist-developed routine, she was now about 50% better.
Some health workers in New Zealand had been very helpful, but she had a rare condition, with options limited by the small population size.
She would be speaking at the NZPS conference on Sunday as a person with lived experience, rather than as a health professional.
The goal was to raise awareness and spread information that could lead to better help for some in need.
Above all she wanted those with chronic pain not to give up hope.
"There’s always more possibilities, there’s always different angles you can explore."
She also intended to start a therapy group for women with chronic pelvic pain, as she did not believe any such group existed in Dunedin.
"It’s such a lonely experience to go through.
"I actually think it would be really good to have like a multi-disciplinary group therapy programme where I have lots of other people come and talk, but I do too and I take people through all kinds of different things they can do to help themselves."
