June 3, 2021 / All Stories

“Ask questions until you get answers.”
How to self-advocate with spondyloarthritis

People with spondyloarthritis, which includes psoriatic arthritis and ankylosing spondylitis, share advice for developing open, honest relationships with your health care provider.

How to self-advocate with spondyloarthritis

Ken, an ankylosing spondylitis patient

On one Christmas morning, Ken Calder, then 19, awoke to such debilitating pain that he couldn’t get out of bed. He had to call his parents to come help and take him to the emergency room. That’s when he knew that a nagging lower back pain, which he thought was from a game of basketball earlier in the year, was something more serious.

For seven years following that basketball game, Calder’s life consisted of countless trips back and forth to new doctors in search of a diagnosis, all while living with pain, stiffness and limited mobility, until finally receiving a diagnosis of ankylosing spondylitis (AS). This inflammatory disease primarily affects the spine and causes pain and stiffness in the back and neck. In more severe cases, AS can cause bones in the spine to fuse together, which can impact the posture to such a degree that some patients become hunched forward and cannot lift their head high enough to see ahead of them.

Spending years building good relationships with his doctors and working together to find the best treatment plan has positively impacted his quality of life, that at one point he didn't think was possible. Now he is sharing his experiences to help others get on a faster track toward answers.

“I’ve learned that shared decision-making about your treatment goals is key to good care, and that comes from open and honest conversations with your doctor about how to best reduce pain and inflammation and improve your quality of life,” Calder said. “But it’s also important to be inspired, so finding a community where you can share and listen and realize you’re not alone has had such a positive influence on my life.”

Antonio, a psoriatic arthritis patient

In his late 20s, Antonio Manfredi awoke to discover that his knee had swollen like a balloon for no apparent reason. He’s had psoriasis since birth, which is a chronic inflammatory disease that caused rashes on his hands but didn’t link his swollen knee to that disease. 

“Within a month the aches in my knee had spread to my feet and hands and it was like something I had never felt before,” Manfredi said. “I knew something more serious was happening, but it took me a long time to figure out what.”

Manfredi was later diagnosed with psoriatic arthritis (PsA), a complex disease that affects both the joints and other domains of the body, and the skin. One in three people with psoriasis can develop PsA. They often experience skin symptoms, fatigue, stiffness, joint swelling and pain. Treating PsA has to span these different manifestations of the disease, which can make goal setting feel like a moving target. This is why it’s important for them to have ongoing discussion with their doctors about disease control.

Like Calder, Manfredi found his voice as a patient. He kept a journal as preparation for meaningful conversations with his doctor and did as much research as possible to understand PsA. He says these actions helped him advocate for better care and help maintain his quality of life, which includes a return to his hobby as an avid hiker.

“I’m very lucky to have a good relationship with my doctor,” Manfredi said. “He understands that improving and maintaining my quality of life is the most important thing for me.”

Helping others see the red flags of AS and PsA

One of the biggest obstacles that both Manfredi and Calder faced, and still face, is the lack of awareness about AS and PsA. That lack of awareness isn’t just with the general public, which can manifest in misunderstanding and stigmas. They also experienced lack of awareness among frontline health care providers, such as physiotherapists, general practitioners and emergency room doctors.

“It’s an exciting time for rheumatologists right now because today they can really help their patients, but first patients have to know that they have to see a rheumatologist,” Calder said.

Today, Calder leads workshops with medical students to help them learn how to conduct a musculoskeletal exam. He helps them look out for common red flags of AS – difficulty getting out of bed or persistent back pain. Students then practice conducting physical exams on him to get real-time, actual patient feedback so that they learn how to recognize that a patient might be experiencing symptoms of an inflammatory disease so that they can help them navigate to get to the right specialist for a proper diagnosis.

Many students end up being general practitioners and remember these skills that helped them refer patients to a rheumatologist or other specialists. He said former students have even thanked him after becoming doctors.

“It’s an amazing feeling,” Calder said. “It means I had an impact, it means I made a difference.”

Journal

Becoming an active participant in your care

Calder said that for him, doctor visits felt intimidating, especially when he was first seeking a diagnosis, but he has since found his voice as a patient and advocate. His top tip for people navigating a similar journey? Develop a strong relationship with your rheumatologist by putting in the effort to figure out how to work with them, asking lots of questions, and don’t stop asking until you get answers.

“I always had questions I wanted answers to, I was organized, I was paying attention to how I felt, I was paying attention to what was going on with my body, and I would ask about it,” Calder said. “This open discussion sometimes triggered new tests and care goals. My care became a two-way street when I became an active participant. I feel like sometimes I get better care because of this.”

Manfredi shares that sentiment: “It’s important to explain to the doctor your goals and what you’re hoping to achieve,” Manfredi said. “I’ve worked hard to maintain my quality of life, and a big part of that is because of the relationship I built over the years with my doctor.”

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