Raising awareness of chronic pain in children and youth

Imagine having pain so debilitating that you can barely move, having to lie in a certain position just to be able to breathe.

Today, 18-year-old Ariana Kubelik is able to walk down stairs and do things she enjoys.

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"I'm happy that I'm able to live my life," she says.

It's a much different situation than what many years of her life looked like. At age 10, she developed pain.

"I had my first flare-up of what we now know is EDS, so Ehlers-Danlos Syndrome."

Her Ehlers-Danlos Syndrome is the hypermobile type. It's a genetic illness that's classified as rare. She says there is no cure, only management, but getting diagnosed and treated was difficult.

"It was terrifying, because no one really knew what was going on," she says.

Kubelik spent about three years in and out of hospitals, including 18 months in a bed continuously, missing an entire year of high school.

"They told me things like I had to get up to get better, but they weren't helping me manage my pain and so I couldn't do that."

Her treatment now is a combination of physiotherapy and medications, including opioids.

"It's all one mix to keep me going," she says.

Kubelik says doctors were reluctant to prescribe the opioids.

"They don't want to take that chance, because they've been trained so trained to steer clear of those, especially in kids."

Her pain is painful for her family too.

"We were her biggest advocates, but we weren't being heard," says Natalie Del Signore, Ariana's mother.

According to the government of Canada, it's estimated that nearly eight million people in the country live with chronic pain.

"We often think about it as an adult issue, but the rates of chronic pain, or pain that lasts months to years, are the same. About one in five children will deal with this pain before they reach adulthood," Dr. Katie Birnie, Solutions for Kids in Pain Associate Scientific Director, tells CTV News Ottawa.

"Opioids shouldn't be the first or the only option, but we want to see an environment where evidence-based approaches for pain management that includes medications, psychological and physical strategies and the use of opioids, where appropriate, are considered without judgement," says Birnie.

National Pain Awareness Week is Nov. 5-11.

"It's really an opportunity for us to highlight why proper pain management is really a central issue and what we should be talking about."