AKII NGO is in chronic pain but you would never know it.
Her shock of blue and pink hair, outgoing clothes and confidence belie a lifetime of suffering.
“You shouldn’t just assume what chronic pain looks like, you shouldn’t assume what chronic pain presents like, and you shouldn’t assume what someone with chronic pain’s life is like,” Ms Ngo says.
“Anyone and everyone can experience chronic pain, and the way that they look doesn’t determine how much pain they are in, and what pain they are going through.”
Ms Ngo was born in Geradlton with necrotising enterocolitis, causing stomach and gastrointestinal pain, and has had spinal problems since the age of 10.
As part of National Pain Week, starting on Monday (July 27), she and other chronic pain sufferers appear in the candid video, Faces of Pain 2020, detailing their experiences.
Ms Ngo is just one of 3.2 million Australians living with pain that doesn’t go away after an injury or illness and lasts at least three months.
“I have, I guess, an overarching condition called Ehlers-Danlos syndrome, so when you have issues with that, it impacts every aspect of your body, and the end result is pain, so I have a lot of neck and shoulder pain. I get chronic migraines. There is no part in my body that isn’t impacted by pain. For as long as I can remember I’ve not had a pain-free day.”
Ms Ngo is executive director of Chronic Pain Australia and is fighting to raise awareness for other sufferers. She says doctors struggle to get their head around the condition, which can lead to sufferers feeling isolated and helpless.
“Self-advocacy for someone who’s living with chronic pain is one for me the most fundamental things to have,” Ms Ngo says.
“It’s an invisible condition. People can’t see how much pain you’re in, and they can’t see how much you are suffering. When they can’t see, they assume it’s not real.” Ms Ngo says self-advocacy is:
• Knowing what your rights are • That you have the right to seek help
• That you have the right for people to support you
• Saying when something isn’t right
During National Pain Week, people living with chronic pain are encouraged to share their experiences and ideas at chronicpainaustralia.org.au/forum or on social media using the hashtag #NPW2020 Chronic Pain Australia, the peak national body for Australians living with chronic pain, will also release Faces of Pain 2020 and the booklet Understanding chronic pain.
CPA national president Jarrod McMaugh hopes the resources will help people better understand the condition.
“Many people think that chronic pain means extreme pain and although chronic pain can be really severe, ‘chronic’ actually refers to how long the pain lasts rather than how severe it is. “It is also different to acute pain which is the pain many of us have experienced from time to time. “We hurt ourselves, experience pain, then heal and the pain goes away.” For more information goto http://www.nationalpainweek.org.au
By STEPHEN POLLOCK