The plight of those whose chronic pain remains invisible. | HerCanberra

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The plight of those whose chronic pain remains invisible.

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Megan Kuleas works full time in the Public Service, undertakes postgraduate studies, loves to bake, volunteers with local charities and spends time with friends and family. She is also one of the 3.4 million Australians who experience chronic pain.

The 31-year-old has been diagnosed with Endometriosis, Adenomyosis, Poly-Cystic Ovarian Syndrome and a heart condition—conditions which are not visible but which impact on her life.

Megan is sharing her story at today’s launch of Painaustralia’s new look and improved National Pain Services Directory at the Capital Pain and Rehabilitation Clinic in Canberra.

Megan Kuleas

Painaustralia CEO Carol Bennett says the updated directory is a practical resource tool connecting consumers and health professionals with more than 200 specialised pain services across Australia.

Pain Champion Tara Moss is also speaking at the event, live from Canada. Tara, who lives with complex regional pain syndrome, says she is dedicated to push for real change and improved public understanding of the experiences of those with chronic pain.

Megan excelled in her career and studies and was on the board of directors for a national charity. She suffered few to no symptoms for the majority of her young adult life. Things came to a sudden halt in 2017 when she started experiencing the most unbearable pain.

“It was like my life began to spiral out of control. My Canberra-based specialist had advised my endometriosis had returned and gotten worse and I needed a more invasive operation. He was no longer able to help me and referred me to Sydney for my fourth surgery,” she says.

“This also began my revolving-door relationship with the hospital emergency department, where I would be admitted for weeks at a time and be placed on a ketamine or fentanyl infusion.

“I was so unwell that I exhausted 11 years’ worth of personal leave in 18 months”.

Megan’s situation became more complicated last year when she started fainting for no reason, sometimes up to 12 times a day and was subsequently diagnosed with a heart condition as a result of her chronic pain.

She is in pain every day – some days it is not as severe and debilitating as others – these are her good days.

“I’m required to take a number of medications which impact me differently each day and I am unable to predict how I will feel as a result.”

Speaking out about her pain has helped her to accept the changes to her health and she hopes will help to break down people’s assumptions of what chronic pain is.

“Chronic pain does not discriminate. It can affect people of any age, gender, or cultural background,” she says.

“It is a commonly-held belief that people with chronic conditions should look sick, that they are usually old or physically impaired, or that they are unable to work or function. Yes, this can be the case, but it is not always as some do not look sick at all.

“I never anticipated that chronic pain could have such an impact on my life, nor did I expect that I would ever be affected by it, particularly at such a young age. I have struggled to accept that I have a chronic health condition. I am still trying to accept that I may never be able to achieve what I was destined to do or what I am fully capable of. I often feel like a failure.

” I have found that speaking about my conditions and my pain instead of trying to hide it has helped me to accept these changes to my health. Being open and honest with others has forced me to be honest with myself. Although I am in pain every day, I am confident that I will not always be in pain and I continue to remain optimistic.

“I hope that by sharing my story, I can encourage others to share their stories too. By sharing our experiences, we can increase awareness and understanding of chronic pain and help to break down the stigmas surrounding pain.”

For anyone who lives with chronic pain and is looking for specialised pain services the National Pain Services Directory is available at painaustralia.org.au.

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