This article is the fourth in our special series on Women and Arthritis. To read the first article in the series, visit Women and Arthritis.
Four women’s stories: Managing work, relationships and parenting with arthritis
Arthritis—even well-managed arthritis—can affect your life in major ways as you do your best to balance medication and self-care strategies with everyday life. And, it can be particularly challenging when arthritis strikes you as a child or young adult. Flourish spoke with four Canadian women in their 20s, 30s and 40s to hear about how living with arthritis affects their work lives, parenting and relationships.
When you are diagnosed with arthritis as a child or as a young adult, the question of work can loom large: Will you get a job? Can you keep a job? Can you do the job you want to do? Jillian Kuchard of Toronto was diagnosed with rheumatoid arthritis (RA) five years ago, just before she turned 25. She says the struggle to get a diagnosis, with frequent absences due to medical appointments and lab work, took its toll, and she was let go from her contract position in the marketing industry. Fortunately, she hasn’t had a significant flare for four and a half years, and is working full-time.
Sometimes, a diagnosis or the progression of the condition requires a different career path. Nairy Markarian of Toronto was diagnosed with juvenile RA when she was two, and had a successful career she loved in hospitality management for 10 years until the long hours on her feet and travel requirements forced her to make a change to protect her health. “That was very difficult for me because I loved what I was doing,” she says. Then living in Jordan, she turned to the non-profit sector and founded the Jordanian Arthritis Association—Rose of Hope. Since moving to Canada two years ago, she’s forged a successful career working part-time as a fundraising coordinator.
Grace Rebamontan of Port Coquitlam, BC, who was diagnosed with RA 14 years ago when she was 26, ultimately decided to quit her job in human resources after battling RA flares after giving birth to her oldest daughter. “I never thought I would be a stay-at-home mom. I never thought I would give up my career,” she says. Now in remission for a number of years, she logs a lot of hours as a volunteer and is considering part-time work when her youngest daughter starts school full-time.
Adrienne Dalla-Longa, who was diagnosed with juvenile arthritis at age four, is the Director of Volunteer Engagement for the Arthritis Society in Vancouver. She says that while she’s been fortunate to have understanding employers (not just the Arthritis Society) throughout her career, that doesn’t happen by accident. “I’ve always been a strong advocate for myself going into any contract negotiations. I’m open and honest with my employer, saying I do have a chronic condition which is medically documented, which requires some accommodations. I ask about their sick leave policy and if my sick time or lunch hours can be used for appointments. At times I’ve taken salary cuts to have flexibility and accommodation in my schedule.”
Relationships with friends and partners can be tricky too. When Nairy’s fiance proposed, she said no—with a caveat. “I said, “Live with me, witness my lifestyle, then afterwards say ‘yes Nairy, I can handle this, I want to be with you, or not.’ I am 45 years old and over the years I have organized my life to make sure I am managing my health issues and proceeding in my career. You should understand I’m not like other women.” (After her three-month trial they did decide to get engaged.)
Adrienne says she was nervous about talking about her arthritis to her friends when she was a child, and in fact didn’t tell a group of long-time friends until six years ago, when she was 25. “It was very hard keeping that a secret. It felt super-isolating and just made you feel a little bit broken or a little bit like an ‘other.’ Sharing it, you understand that everyone has struggles and that struggle is a commonality, whether it’s physical disease or mental illness or family struggles.” Her boyfriend of three years is very understanding—for instance, he gets that she needs a low-key 24-hour-period every week when she takes medication that makes her nauseous, meaning that socializing and even kissing are out of the question.
Jillian met her boyfriend of five years when she was in remission, about a year after she was diagnosed, and while he’s a supportive guy, she wonders what he’ll think when he sees the reality of a significant flare. And, she notes that the side effects of a compromised immune system are tough. “When I get a cold, I’m out for a month. My rheumatologist says I probably have one of the worst immune systems he’s ever seen. I think that piece has been a struggle for our relationship—me constantly being run down and sick.”
As for Grace, she says her husband has been a steady source of support (“He could see how much pain I was in; he was carrying me up the stairs, helping me in and out of bed, he really took on a big role.”) Friendships, however, did not always survive. “RA can be an invisible disease. So when friends looked at me, I seemed perfectly fine, so they couldn’t understand the fatigue, the pain. They’d say, ‘oh she’s not putting in the effort to hang out, or she’s cancelling again.’ I’m still friends with the ones that supported me, and I’ve distanced the ones I didn’t need in my life. When you get older you realize it’s not important to have a lot of friends, but to have friends you can count on.”
Deciding whether or not to have children can also be a thorny issue for women living with arthritis. “My personal decision is to not have kids, and that is somewhat related to my arthritis,” says Adrienne. Becoming a mom is on Jillian’s mind: “I’m pretty terrified, honestly.” Her rheumatologist has advised she would need to stop her current medication for three months before trying to conceive, and stay off that particular med through a pregnancy, although other meds are possible. “If I can get pregnant, if it’s a really rough pregnancy from the arthritis I don’t think I would want to try for another child.”
Grace had two different experiences with two different pregnancies. After her first daughter was born nine years ago, she developed resistance to her biologics medications and had a severe flare, and she moved to her parents’ house from Monday to Friday when her husband was at work because her joints were so painful she couldn’t lift her daughter. “It was a very hard experience,” she remembers. “It’s not something I would ever wish upon anyone. It took a lot of inner strength and a lot of support from friends and family to get through it.” The physical pain triggered emotional pain too. “You’re in pain and you’re frustrated but you don’t want to be angry. I spent a lot of time just trying not to cry and not show emotion.” Armed with new research, she and her doctor decided she should stay on her new biologics during her second pregnancy, and she didn’t experience the same disabling flare. She also had both wrists fused before her second pregnancy, which helped to manage her RA pain. Today, she has a great relationship with her two girls.
It’s an undeniable truth that living with arthritis can difficult and frustrating —it’s very hard to take in how your life might change. Jillian says she was overwhelmed by her diagnosis at first, but has since found her way. “It’s scary, but there’s hope and so many treatments to try out. [Arthritis] is much better to manage than it used to be.