Arthritis: A Journey You Can’t Prepare For

For Jennifer, it started with stiff hands in the morning and progressed to random tingles and throbs in toes, knees and fingers – strange enough to notice, but small enough to ignore.

Then came the all-consuming wave of fatigue, but that could be explained away too. Jennifer was a new mom, up in the night nursing a baby and not sleeping like she used to. It was also Christmas of 2021 and parents were raising kids in isolation, without family support, and in the throws of a global pandemic.

“I thought I was supposed to be tired,” she said. “I was experiencing a lot of ups and downs, really feeling the world’s stress and struggling to care for my daughter without a village.”

Jennifer waited a few months before reaching out to her family doctor and was diagnosed with postpartum depression, but knew something else was going on and pushed for a blood test.

“Everything came back normal, my RA Factor and CRP were normal” she said. “There was some evidence of anti-nuclear antibodies (ANA Test), but not positive enough for a diagnosis.”

“I was struggling to keep up with my daughter and I was her primary caregiver,” she said. “I kept thinking I wanted to go back to work, but my body wouldn’t let me. And my body is literally my instrument.” As a performing artist and coach for creatives and artists, Jennifer’s job can be physical and involve long hours. She wondered if she’d ever be able to work again.

“I was in survival mode and all my energy was going towards taking care of my toddler.

Out of the Fog

In an attempt to get Jennifer’s inflammation under control, her rheumatologist prescribed hydroxychloroquine, a disease-modifying anti-rheumatic drug (DMARD). When that wasn’t enough, she was put on sulfasalazine, another DMARD. Jennifer also did a couple rounds of prednisone, but struggled with the side effects.

“Going on these serious medications was scary for me, as I can be quite sensitive to medication, so I had to choose to be brave,” she said. “Although it was pretty rough the first 3-6 weeks for me, I’m glad I went this route because the drugs gave me the space to feel better, have more energy and regain some control in my life.”

In June of 2023, Jennifer finally felt like the medication was working. “It’s like I have my life back, and saying that brings tears to my eyes,” she said. “I have so much relief and I’m out of survival mode.”

Not Out of the Woods

With her inflammation controlled, Jennifer worked on navigating life with a chronic disease. She enrolled her daughter in a part-time, outdoor preschool and slowly started doing more activities.

“I needed some alone time to process everything, and figure out how to weave work back in,” she said. “So, I started with taking walks outside, and did a lot of journaling, and I just let myself listen deeply to myself and slowly figure out the most sustainable way to move forward.”

Jennifer is now starting to audition for roles and hopes to be a regular on a TV show one day while also creating her own performance pieces too. “Being a performing artist is a huge part of my identity that I’ve been missing so much,” she said. “It’s definitely a calling. I don’t know who I’d be if I didn’t perform. It’s been almost 3 years that I’ve been off work now, so it’s a bit wobbly, but I’m ready be back.”

She’s also re-launching her coaching practise where she works with other artists to help them navigate their own creative paths. She just finished a new coaching certification this fall and is now working with a small number of clients. “I care deeply about creative people making their dreams happen, no matter the obstacle, and now I’m learning a whole new layer of perspective with what I’m going through.”      

“I’ve learned that slow is best when you’re living with rheumatoid arthritis.” She admitted there is a certain level of uncertainty a person has to accept when living with arthritis. Flares, for example, amplify that uncertainty, bring out the worry and can cause her mental health to spiral. 

“Flares are very triggering and depressing,” she said. “My brain fog can be brutal. It’s like mom brain x 100 and some days, I can’t string sentences together.” That’s when Jennifer starts to worry about the future – especially about the role she will be able to play in her daughter’s life as she grows up.

“It’s the worst when I’m looking at my daughter and she wants me to chase her, jump around or get silly and there’s no way I can do it. I look at her and feel sad and angry. What if this is my life now where I can’t keep up with my daughter and she has a mom that’s sick all the time? It brings up so much anticipatory grief. I wonder, what is my life going to be like?”

Flares also remind Jennifer of her time in survival mode. They make her think back to that first summer with rheumatoid arthritis when the family had to cancel all travel plans because she couldn’t handle the stress of being away from home or spending a lot of time in cars or on planes.

“There’s always this sneaky little fear inside me about whether I’m being the best parent for my kid. I know most parents in general have this fear, but it’s got an extra layer when you’re a parent with a chronic illness     ” she said. “And if I’m not attentive to that fear, it’ll generalize into fears about all aspects of my life – and whether I’ll have to stop doing things I love to do, and how that’ll impact others, and so the spiral goes. Rheumatoid arthritis impacts everything.”

Seeing the Good in the Worst

Jennifer has learned to soak up the good days and be grateful for what she has. With more energy, she is starting to do more activities with her daughter.

“I want to add in those extra things I imagined doing with her before she was born. Dance parties in the kitchen, hide-and-seek, putting on puppet shows, skiing, camping trips… all the precious moments of childhood.”

Jennifer is more intentional with her time and cares less about saying no or cancelling plans. She prioritizes rest and is working on retiring her “type A” personality. She lets the house get messy and no longer cares about the world’s hustle culture.

“High-Achieving-Jen can no longer be the one steering the Jen Ship and that’s okay,” she said.

It may take a village to raise a child but it also takes a village to live with a chronic disease. Jennifer’s husband is her best friend and her biggest source of support.

“I don’t know if he will ever fully understand my experience, but he’s always there for me no matter what,” she said.

Jennifer also seeks support from friends and family, as well as people on social media who share their lives with rheumatoid arthritis. More than anything, she wants other people living with inflammatory arthritis to know that it can get better.

“There’s no crystal ball for my future, but there are a lot of medications, resources, and good people in this world doing work to help people live well with arthritis.”

Photo credit (left to right): Jennifer Pielak, Jon Major, Jennifer Pielak, Jennifer Pielak