The Arthritis Advocate, Volume 3
Better Arthritis Care Begins by Listening to Women
Cheryl Koehn, Founder and President, Arthritis Consumer Experts
For too long, arthritis has been misunderstood as simply an inevitable part of getting older. Yet for millions of women in Canada, arthritis is anything but inevitable—and it is rarely simple.
It can influence career choices, family planning, pregnancy, caregiving responsibilities, financial security, mental health, and the ability to participate fully in everyday life. Arthritis often intersects with the many roles women play, shaping not only their health but also their relationships, opportunities, and future.
Nearly two-thirds of Canadians living with arthritis are women who are also disproportionately affected by many forms of arthritis. They are more likely to develop inflammatory diseases such as rheumatoid arthritis and lupus. Osteoarthritis affects women more frequently and often more severely than men. Biological differences—including hormones and immune function—play an important role, but biology tells only part of the story. Social expectations, caregiving responsibilities, employment patterns, and barriers within our healthcare system all influence how women experience arthritis and the care they receive.
These experiences deserve greater attention because equitable healthcare begins with recognizing that people experience disease differently.
Recognizing these realities requires more than awareness. Healthcare systems must also be designed to respond to them. That vision is reflected in Arthritis Action Now plan to transform arthritis care and research. Among its catalyst initiatives is a clear commitment to improving arthritis care for women, recognizing that advancing women’s health represents one of the greatest opportunities to improve outcomes for millions of people living with arthritis in Canada.
The plan calls for strengthening research and improving collaboration between arthritis specialists and women’s health care providers and developing care that reflects women’s lives across every stage—from adolescence and reproductive years to menopause and older age. It also recognizes that arthritis does not exist in isolation. Decisions about treatment often intersect with pregnancy, breastfeeding, menopause, caregiving, employment, and other aspects of life that have historically received too little attention in arthritis care.
To build better care, we first need a better understanding of what women living with arthritis experience every day.
That is why Arthritis Consumer Experts (ACE) has launched a national survey on women and arthritis care.
The survey is not simply about collecting opinions. It is about gathering evidence directly from the women who live with arthritis every day. We want to better understand the challenges women face in getting a diagnosis, accessing specialists, making treatment decisions, navigating pregnancy and menopause, and balancing work and caregiving.
Perhaps most importantly, we want to identify where care is working—and where it can be improved.
At ACE, we have long believed that patient experience is the foundation for better policy decisions. Clinical trials tell us whether treatments work. Health system data can tell us how services are used. But neither can fully explain what it feels like to wait months—or years—for a diagnosis, struggle to access appropriate care, balance disease management with raising a family, or make treatment decisions during pregnancy or menopause.
Only women living with arthritis can tell us that.
Over the years, ACE’s national surveys have provided invaluable insights into the lived experience of arthritis in Canada. They have helped identify gaps in care, highlighted inequities in access to treatment, and informed conversations with health care professionals, researchers, governments, and policymakers. When thousands of individual experiences are brought together, they become something far more powerful than personal stories—they become insights that can shape clinical practice, influence policy, and improve care.
Women’s health is one of the clearest examples.
For decades, women’s health issues have too often been under-researched, under-recognized, or viewed through a one-size-fits-all lens. Arthritis treatment has made important advances, but there is still much to learn about how sex and gender influence disease, treatment responses, healthcare experiences, and long-term outcomes.
Women experience arthritis differently than men. Hormonal changes, pregnancy, menopause, caregiving, employment and access to care all influence how arthritis affects women’s lives. That’s why listening to women is essential to delivering better healthcare.
The vision outlined in Arthritis Action Now reminds us that transforming arthritis care will require more than scientific discovery. It requires healthcare systems that are equitable and informed by the experiences of the women they serve.
Better questions are the starting point. It continues by acting on what women tell us.
If you are a woman living with arthritis, we invite you to participate in ACE’s national survey on women and arthritis. Your experiences can help identify priorities for research, improve clinical care, strengthen advocacy efforts, and ensure that future policies reflect the realities women face every day.
Completing a survey may seem like a small act. But collectively, thousands of voices become evidence, and evidence has the power to improve care and lives.
Better arthritis care for women begins by listening.