Watching Jen walk down the street, you’d never know she is bracing against the pain with each step.
The 31-year old says that is part of the problem. “I look good on the outside. It would be easy for someone to think I am faking it,” she says. “On the inside I can be crying with pain.”
Jen was 18 when she first experienced pain from endometriosis.
In years gone by, there have been times when the dark clouds of pain hanging over Jen left her feeling down.
By 26, the pain was having such an impact on her life that she was ultimately forced to quit the job she loved.
“Pain wears on you day after day in a way you could never understand if you haven’t experienced it,” she says.
In 2011, Jen’s family doctor Dennis Hayes began working with her at his clinic and those feelings started to lift.
He later referred Jen to the Calgary Foothills Primary Care Network’s Extended Health Team.
“I honestly can’t tell you what a difference they have made to my life,” Jen says.
The Extended Health Team offers care to patients who suffer from complex, long-term (chronic) conditions including chronic pain, irritable bowel syndrome and mental health issues, such as depression and anxiety.
“Just having someone I can call or turn to when I’m down and think I’ll never get out of the pain — and at the end of the line there’s someone so warm and open and willing to listen,” she says. “I owe them so much more than I can say.”
While many patients are referred to the Extended Team for assessment or treatment of a single condition, added complexity and other issues can be uncovered.
The health team, which includes a range of health professionals such as health management nurses, pharmacists and doctors, takes a holistic approach to each patient’s needs.
Jen’s first step towards recovery was a class on understanding pain — learning how the brain and the nervous system work together to produce our emotional and physical experience of pain.
She joined pacing classes, which taught her to intersperse the activities she needs to do each day with periods of rest that help reduce pain flare-ups.
Jen also learned about breathing, meditation and yoga and how distracting herself can help reduce the pain.
Over time clinical pharmacist Joe Kwan helped Jen, who was taking pharmaceutical drugs to cope with the pain, to slowly reduce her dosage.
At the same time, they worked to minimize the effects of withdrawal, such as cold sweats and mood swings.
“The challenge is to help patients develop other coping tools so they can rely on those tools to deal with the pain when the narcotics are removed,” Joe says.
“It can involve working to improve mental health and providing supports in their social environment that increase the ability to function.”
But opioids are no longer recommended in the treatment of chronic pain that is not caused by cancer.
Research now shows it is best to get support, get active, get a recovery plan and get started.
Extended Health Team medical lead Dr. June Bergman says patients can develop a different world view because of something that happened as they first experienced chronic pain — often as a result of adverse events in early life.
“We try to help patients shift that world view that is no longer working for them,” she says. “We help them explore new ways of being. Once we have that shift and that buy-in, we can try something totally different.”
On this journey to better manage her chronic pain, the team helped Jen deal with mental health issues that were making her pain worse.
Jen now understands that a difficult childhood prevented her from developing some of the life skills she needed.
“I couldn’t communicate before, even express that I was angry or discuss things,” she says. “The mental health team talked to me and I learned so much — steps on how to get angry, how to communicate. You don’t know you are missing these steps until someone points them out. I learned I don’t have to put a smile on my face all of the time and it’s okay to cry sometimes.”
A team approach
Jen says she feels more whole as a person thanks to the help of Dr. Bergman, behavioural health consultant Deborah McDougall, shared mental health consultant Jean Leong and the whole team.
Jen is also more ready to accept help, such as efforts to bring specialists to the Extended Team’s Crowfoot clinic, where Jen felt more comfortable.
Jen’s partner is also surprised how extensively the team has included him in every step in her care. “I’ve been to a lot of the appointments. I’m always invited,” he says. “They explain what is happening for Jen, and that’s good, because I really didn’t know how bad it was. I don’t pressure her to go out and do something if she says she isn’t feeling well, because I understand now.”
The couple has grown closer through shared understanding.
“Just the fact that she is up and doing stuff is enough for me,” he says. “Before Jen was taking the pain killers just to get through the day, but she’d be knocked out and couldn’t go anywhere because she was sleeping all the time. I find she laughs more like she used to.”
While Jen still feels moderate pain throughout the day and occasional bouts of intense pain, she is better able to manage and is happier.
She is looking forward to further treatments, to feeling even better in the future and getting back to the work she loves.
“I know there is hope now and I am looking forward with hope,” she says. “That’s a good place to be.”