Alison’s Style: Stepping into Life with Juvenile Arthritis

ALISON

“I think that those of us with JIA are part of a bigger community that’s going through it. We all have an opportunity to advocate, educate, and empower others – silently, or widely. Each of us has something to offer.”

Alison and I first met several years ago at Camp Capilano, an educational retreat for children who are living with Juvenile Idiopathic Arthritis (JIA), Lupus (SLE), and other rheumatic diseases. I was immediately drawn to her energy and enthusiasm. She always put a smile on my face. Today, Alison is a half marathon runner, arthritis community advocate, and a big fan of superhero movies. At university, she is currently pursuing a double major degree in computer science and applied math.

Alison was diagnosed with Juvenile Idiopathic Arthritis (JIA) at age 3. JIA is an autoimmune disease which creates inflammation in the joints, “the place where bones come together” (Arthritis Society Website). Growing up with JIA left damage in several of Alison’s joints, but her condition was “mostly under control” until her late teen years. Following an arthritis flare-up in her jaws at age 16, Alison underwent reconstructive surgery on both of her jaws. A year later, she started experiencing the same “bad pain.” The arthritis was back, creating further damage to her jaw.

“I took a year off between high school and university to come up with a plan to make it easier to live my life as a young adult. I wasn’t going out a lot or having that much fun. Instead, I went through Botox, physiotherapy, and a number of doctor’s appointments for the arthritis in my jaw.”

Alison will eventually need a total jaw joint replacement. However, she explained that given her young age and “less research done on the ways this procedure impacts people in their twenties,” she may have a while to wait.

“Living with chronic pain for the past two years has not been easy…especially when the pain is invisible. I have to take it a day at a time, and some days are better than others. But, during this process, I’ve learned a lot about myself and met a lot of incredible people who also deal with this disease or something similar.”

Today, Alison chooses to use her personal experiences with JIA as a way to advocate for others who are adjusting to life with arthritis. Last year, she ran a half-marathon in Belgium through Joints In Motion, which is the Arthritis Society’s main fundraising event. Proceeds went towards the non-profit organization’s programs as well as research. In total, Alison raised $12 000.

“The community really came through. I had this amazing support system. I still get chills just thinking about everyone who helped me along the way. It was a reminder that people are with you through this challenge and that others want to see this disease ended too. It was great to be part of that and feel like I was making a difference.”

When Alison and I met for our interview, she had just returned from an inspiring week as a counselor at Camp Capilano. Her eyes sparkled as she spoke of her experience this year.

“It’s so special to connect with camp participants and fellow counselors. We reach out and relate to one other. Each person has helped me as much as I’ve helped them.”

When I asked Alison about her personal style, she informed me that over the years, she has made subtle but important shifts to her clothing as a result of her arthritis and medication side effects.

She defines her style as “casual, but cheery.” She enjoys wearing bright colours and fun patterns.

Most of her shorts are longer and loose to accommodate to changes in weight from medications. The pants she owns are mainly soft denim or jeggings (jean leggings). The biggest change that Alison has made to her style is with her shoe choice.

“I have arthritis in my toes, and it affects how I walk. In the summer, I practically live in my Birkenstock sandals. I also love wearing runners. Flats and heels give me blisters, so I don’t wear them. It’s important to me to have flexible footwear that supports my feet and fits my orthotics.”

In terms of accessories, Alison wore a Fitbit bracelet. She uses it to keep track her daily physical activity. She also wore a friendship bracelet from Camp Capilano, which reminds her of the powerful stories and positive memories of being immersed in that environment.

Alison also has a tattoo: a Chinese symbol meaning “strength.”

“I got this tattoo when I learned that I would have to take my first year of post-secondary school off to get my arthritis under control. It’s a reminder that I am stronger than anything arthritis throws at me. Growing up, I had a lot of problems with my right wrist. I also wanted my tattoo to be in a place I could see so that I never forget that I am strong. My mom is part Chinese which is why I chose the Chinese character.”

Quick Questions with Alison:

How does having JIA impact your life on a daily basis?

Sometimes, I wake up in the morning with pounding pain in my head and face. At school and work, it can be hard to stay focused for long periods of time when the aching sensation in my face continues. I don’t always have the energy to hang out with friends after work. It can be hard to explain to people when the pain is not visible.

In regards to these daily challenges, have you surprised yourself with something that you have accomplished?

Finishing my first year of university was a big accomplishment.  I finished with the required credits to be a sophomore (second year), which was exciting. Deciding to add a second major of applied math was also a big deal. It’s definitely not going to be easy, but I’m excited for the challenge and proud of myself for choosing to stick with it.

What is something that people might be surprised to learn about you?

I still participate in sports! During the school year, I participate in intramural activities. In the winter, I enjoy skiing. It’s not always easy, but I really enjoy trying new sports. I actually just tried waterskiing last week!

Where do people stumble with their understanding of arthritis? What changes would you like to see?

Arthritis doesn’t discriminate. It’s often assumed that arthritis can only happen when you get older, but that’s not true. It’s a very different disease when you’re young. Most people aren’t on the amount of medications I’m on right now. I would like to see more education for today’s youth and adults to say that it can affect anybody.

What advice would you suggest to other young people who are living with arthritis?

Over time, you learn to live with it, deal with it, and take it in stride. It’s really important to feel your emotions instead of trying to suppress them. I support that. It’s not always easy to have a positive attitude with this disease. I think it is okay to feel sad or upset for a day, as long as you don’t let that become who you are and define who you are.

Alison has truly used her experience with arthritis to provide mentorship and hope to other young people with and without this disease. I admired her honesty, authenticity, and openness when speaking about her personal style and story. When I asked her what she is most proud of considering what she’s gone through, she smiled warmly.

“I’m proud of the person I have become in spite of my arthritis. I’ve dealt with a lot, but I think I still live a pretty normal life. It’s been a journey to say the least, and I’m proud to have come out on the other side of this obstacle.”