Parenting with Arthritis is Possible

Some people are diagnosed with inflammatory arthritis before becoming parents. Others receive this news after having children. Both scenarios can bring an overwhelming wave of questions, uncertainty and stress.

Parenting and arthritis are life-changing, but parenting with arthritis adds an extra layer of complexity to daily life. Inflammatory types of arthritis often create havoc and require people to change their mindsets and think differently about themselves and their priorities.

“Parents with arthritis report more difficulties with parenting tasks than parents without arthritis,” said Dr. Catherine Backman, an occupational therapist and Arthritis Research Canada Senior Scientist Emeritus. “They also report a similar sense of competency and satisfaction as those without arthritis, this holds true for both mothers and fathers.”

Backman has worked as an occupational therapist for over 40 years with a research focus on the impact of arthritis on social roles, such as parenting. She said people with arthritis are sometimes advised not to become parents due to the challenges that inflammatory arthritis can cause.

Backman wants people with arthritis to know that they can become parents or be the parents they want to be. However, finding balance is essential.

The Unknowns of Arthritis

Inflammatory arthritis can create significant uncertainty in a person’s life – with unpredictable symptoms often disrupting employment, parenting and leisure activities. When a person is diagnosed, it can also take time to get inflammation under control.

“It’s a learning process to accept the ups and downs of arthritis,” Backman said. “This is often described as having ‘good’ days, ‘bad’ days and ‘worse’ days, and it’s difficult to predict the type of day in advance,” Backman said.

In one of her studies, mothers living with inflammatory arthritis described this uncertainty as “sometimes I can and sometimes I can’t.” They developed new habits and ways of adapting, but there were still days when arthritis interfered with their parenting.

Fatigue is often said to be the most challenging aspect of arthritis. In general, parents with inflammatory types of arthritis report 50% more fatigue and 50% less energy than parents without arthritis, according to Backman.

“It’s more than being tired,” she said. “It’s a persistent, overwhelming sense of fatigue that knocks people flat.”

To explain the difference between fatigue and tiredness, Backman shared one mom’s story. The exhaustion hit her while she was in an elevator, prompting her to push the emergency stop button and collapse to the floor.

“She just needed quiet solitude to change her mindset and decide how she would get through her day. Somebody who is tired would not go to that extreme.”

Double Adapting

Becoming a parent involves adapting and striving for balance while also caring for another person. Adding an arthritis diagnosis to the equation only increases the need to adapt. And change can be hard.

Backman said parents with arthritis need to reflect on what’s most important in their day-to-day lives and find strategies for concurrently managing symptoms and the demands of their family and children to reduce distress and find balance.

“No one can tell a parent the right amount or variation of activities for their family,” Backman said. “They need to decide on their own and not strive to be super mom or dad.”

Backman offers the following tips:

• Have a flexible mindset to deal with uncertainty. One mom told her that she developed a strategy for household work. The house needed to be clean enough to meet safety and hygiene standards, but didn’t need to be perfectly neat.
• Have a variety of downtime options, alone and with family members. People don’t need to be scheduled all the time.
• Don’t do it all. Find ways to delegate, ask for help and let go.
• Cultivate self-care routines that support rest, creativity, and physical activity in minutes instead of hours so they are manageable.

“Leisure doesn’t have to be a big event,” Backman said. “Very young children can easily entertain themselves in just five- and 10-minute pockets. Observe your kids and think about how to cultivate self-care in minutes rather than hours.”

Backman also suggested connecting with other parents living with chronic diseases.

“Both fathers and mothers in our studies talked about connecting with others for support and information,” she said. “Chances are you can find someone further along a similar path, who is adapting to their arthritis, and the shifting demands of parenting. They can share their wisdom.”

Mothers vs. Fathers

According to Backman’s research, fathers took a different approach to adapting than mothers. In a small study of fathers with arthritis, participants described the process as taking ownership of their health.

They worked to understand their arthritis and decide what steps to take to be healthy.

Fathers saw a need to redefine themselves to keep being involved with their children, regardless of the tasks they could or couldn’t do.

They described how physical limitations sometimes made tasks difficult or affected their choices about what activities to do with their children,” Backman said. “But they didn’t believe, at least in this group, that it affected their role as a father. They still saw themselves as engaged, involved and committed.”

Chris Pudlak, a member of Arthritis Research Canada’s Arthritis Patient Advisory Board, was diagnosed with ankylosing spondylitis in 2016. At the time, he was only 36 years old and a father to three young children. His experience echoes that of the fathers in Backman’s study.

“My doctor told me that it’s not something you die from; it’s something you die with. It’s a permanent condition,” Pudlak said. “That was a life-changing moment. I knew I had to make some serious changes.”

Pudlak began documenting everything, including the food he ate, the time he ate, the impact of different drugs, diets and exercise on his symptoms and much more.

“My family was #1 as a motivator,” Pudlak said. “I wanted to stay active. I wanted to be strong as a father for them. I wanted to go to work and provide for my family.”

Adapting in Action

While adjusting to life with arthritis can feel like a big transition, smaller changes can make parenting with a chronic disease more manageable. Here are some real-life examples from Backman’s research:

• A mom with arthritis, who was expecting a baby, had a friend who had twins and needed help. This was a symbiotic relationship because the mom with arthritis could go and help her friend with twins and start problem-solving before the birth of her child. She figured out, for example, that she would need sleepers with zippers and not snaps. She also developed different bathing strategies. This allowed her to purchase equipment and supplies in advance.
• Another mother, after grieving the loss of certain activities, such as skiing with her family, changed her mindset and decided she could still be supportive and cheer them on from the sidelines. It was a positive way to stay engaged.
• One mom realized that on her worst days, she struggled to accommodate the physical aspects of parenting. To overcome this challenge, she would gather her children and storybooks onto a big blanket. It became a routine. They shared story time, quiet play and napping together.

From Worry to Seeing the Positives

Many parents believe their arthritis plays a role in raising thoughtful and caring children – that because they live with a parent who experiences ups and downs due to chronic illness, they become helpful and empathetic.

“Parents in our research studies saw this as a potential bonus of their arthritis,” Backman said.

However, Jennifer Pielak was diagnosed with rheumatoid arthritis after the birth of her daughter and worries about how having a parent with arthritis is affecting her.

“I’ve already noticed that she’s a very caring person. She’ll make me a pretend medicine drink to help me feel better or come snuggle with me,” Pielak said. “But I worry about her worrying.”

Though regarding her relationship with her partner, Pielak saw it as being positive overall after her diagnosis. “I feel like it has drawn us closer together.”

She wants other people to know that it is possible to be a parent with arthritis.

“There are amazing people doing research to help us live really great lives, and there are a lot of options now. I can get pregnant. I can have a family. I can work. I can live a pretty normal life.”

Ongoing Research

In collaboration with other arthritis organizations, Arthritis Research Canada’s scientists, including Backman, recently held webinars on arthritis, pregnancy and parenting.

The goal of these webinars was to create forums for discussion among researchers, patients, and clinicians; raise awareness on emerging issues requiring future research; and provide evidence-based, practical advice for patients, caregivers and families.

“These webinars illuminated the profound impacts of arthritis on patients and families and revealed knowledge gaps for future research,” said Dr. Mary De Vera, Senior Scientist and Associate Director of Training at Arthritis Research Canada.

In addition to these webinars, scientists are also looking into the mental health of mothers and fathers living with autoimmune rheumatic diseases during the early parenting years.

Becoming a parent is a major life event that brings additional challenges to those managing chronic diseases and new challenges that come with parenting.

Understanding and promoting mental health in parents with young children is particularly important given the adverse impacts of parental mental health problems on child development.

Photo credit (from top to bottom of page): Jon Major, Brian Ceci, Jennifer Pielak.