How Women with Chronic Rheumatic Conditions Find Meaning Through Everyday Activities
Imagine waking up every morning feeling like your body is working against you. Your joints ache with a stubborn persistence that has become your unwelcome normal. Simple tasks—lifting a coffee cup, buttoning a shirt, playing with your children—require strategic planning and often come with a cost of increased pain. This is the daily reality for millions of women living with chronic rheumatic conditions (CRC), a group of autoimmune disorders that include rheumatoid arthritis, lupus, and other inflammatory joint diseases.
What if we told you that behind these physical struggles lies a deeper, more profound battle—one of identity, meaning, and the very essence of how these women view themselves in the world? Recent research has uncovered that for women navigating life with these conditions, everyday activities become more than just tasks to be completed; they transform into narratives through which these women reconstruct their identities and find meaning despite their physical limitations 3 .
Rheumatoid arthritis alone represents a total annual societal cost in excess of $39 billion in the United States 8 .
This article explores the fascinating intersection of narrative psychology, occupational therapy, and rheumatology, revealing how the stories women tell themselves about their daily activities shape their experience of chronic illness and ultimately, their quality of life.
Chronic rheumatic conditions encompass over 200 different diseases characterized by inflammation, pain, and stiffness in joints, muscles, and connective tissues. These are not merely orthopedic issues but complex autoimmune disorders where the body's defense system mistakenly attacks its own tissues. Unlike acute injuries, these conditions persist for months, years, or even a lifetime, with symptoms that often fluctuate unpredictably between periods of remission and flares 6 .
In recent decades, healthcare research has undergone a significant paradigm shift—from purely biomedical models to approaches that recognize the importance of personal experience and meaning-making in chronic illness. This is where narrative inquiry comes in.
"Chronic pain interferes with one's ability to function and participate in workplaces, relationships, schools, and society" 1 .
Narrative inquiry is a qualitative research methodology that examines how people make sense of their lives through storytelling. According to Clandinin and Connelly (2000), whose work has been influential in this field, narrative inquiry understands human experience as fundamentally shaped by stories 1 . Central to this approach are the concepts of "being storied" (how individuals are perceived within broader societal narratives) and "stories to live by" (how people make sense of their experiences through personal narratives) 1 .
The biopsychosocial model provides a framework for understanding how biological, psychological, and social factors interact in chronic illness 6 . For women with rheumatic conditions, this interplay becomes especially complex in the context of societal expectations and personal values.
Researchers Alsaker and Josephsson found that women with CRC navigate what they term "moral quests" through their everyday activities 3 . These quests represent ongoing negotiations between:
These moral negotiations happen not in dramatic moments but in the mundane activities of daily life—preparing meals, engaging with children, attempting to work, or even simply getting dressed in the morning.
One particularly illuminating study that demonstrates the narrative nature of everyday activities for women with CRC comes from Norway, focusing on mothers with inflammatory arthritis (IA) 6 . The researchers recognized that while much attention had been paid to medical treatment and pregnancy outcomes, little research had explored the lived experience of motherhood among women with these conditions.
The study asked: How do mothers with IA experience motherhood, and what challenges do they encounter within a biopsychosocial framework? 6
The research team adopted a qualitative design centered around an open-ended question that allowed women to share their experiences in their own words. Here's how they conducted the study:
186 women were recruited through RevNatus, a Norwegian nationwide quality register for women with inflammatory rheumatic diseases who are planning pregnancy or are pregnant.
Participants responded to the open-ended question: "Is there anything, in particular, you have experienced as challenging with being a mother and having a rheumatic disease at the same time?"
Analysis of the women's responses revealed that motherhood with IA was experienced as a difficult balancing act with multiple dimensions 6 . Five key themes emerged:
The Norwegian study powerfully demonstrates how everyday activities of motherhood become imbued with moral significance for women with rheumatic conditions. Changing a diaper or playing on the floor becomes not just a physical challenge but a narrative act—a expression of one's values, identity, and relationship with societal expectations.
The researchers concluded: "The challenges these women meet are multifactorial and complex, including physical, mental and social issues that have a large impact on their everyday life. Focusing solely on improving medical treatment will not solve the challenges these women face" 6 .
This aligns with earlier work by Alsaker and Josephsson, who found that women with CRC link everyday activities to moral quests—ongoing negotiations about what constitutes a "good" life within their limitations 3 .
| Characteristic | Value |
|---|---|
| Mean Age | 32.7 years |
| Diagnoses | Rheumatoid Arthritis (62.4%), Spondyloarthritis (24.7%), Other (12.9%) |
| Mean Disease Duration | 8.3 years |
| Education Level | University/College (69.9%), High School (26.3%), Other (3.8%) |
| Number of Children | One (45.7%), Two (40.9%), Three or more (13.4%) |
| Time Since Last Birth | 2.4 years |
Table 1: Demographic Characteristics of Study Participants 6
| Challenge Category | Specific Challenges | Example Quote |
|---|---|---|
| Physical | Difficulty with lifting, carrying, playing; fatigue impacting caregiving | "I cannot lift my child, which is very limiting" |
| Medical | Medication dilemmas during pregnancy/breastfeeding; coordinating healthcare | "Not being able to take anti-inflammatories while breastfeeding was tough" |
| Emotional | Guilt about limitations; worry about children's perceptions; frustration | "I'm afraid the kids will look back and think that I didn't want to be involved" |
| Social | Strain on relationships; needing but resisting help; social isolation | "I'm fully dependent on my husband, who has been absolutely fantastic" |
| Unpredictability | Inability to plan; good and bad days; adjusting plans last minute | "The disease is unpredictable, which makes everything more difficult" |
Table 2: Primary Challenges Reported by Mothers with Inflammatory Arthritis 6
| Moral Quest | Description | Example Expression |
|---|---|---|
| Quest for doing well enough | Concern about meeting personal and societal standards despite limitations | "Am I doing enough as a mother/partner/employee?" |
| Quest for societal good | Questioning and negotiating society's values and expectations | "Why does society value productivity over health?" |
| Quest for ordinariness | Desire to participate in normal activities and be perceived as normal | "I just want to be seen as me, not as my disease" |
| Quest for recognition | Need to have one's struggles and efforts acknowledged | "I wish my doctor would understand how hard I'm trying" |
| Quest for belonging | Maintaining connection despite limitations | "I worry I'll become isolated because I can't always participate" |
Table 3: Moral Quests Identified in Women with Chronic Rheumatic Conditions 3
Diagnosis Distribution Among Participants
Number of Children Among Participants
Understanding the narrative dimensions of everyday activities for women with CRC requires specialized methodological approaches.
In-depth, often multiple conversations with participants that allow rich stories to emerge.
Collection and analysis of participants' creations—artwork, essays, pain journals, and poetry.
Programs like NVivo help identify patterns and themes across large volumes of qualitative data.
Standardized measures to assess usability of digital tools 9 .
Metric for assessing user acceptance of digital health interventions 9 .
Structured peer interventions leveraging the value of peer support in rheumatic diseases 8 .
The research on narrative and everyday activities for women with chronic rheumatic conditions offers powerful insights for improving care and support. By recognizing that daily activities are more than just tasks—they are narrative acts through which women construct meaning and identity—healthcare providers can develop more holistic, effective approaches to treatment.
As research continues to evolve, particularly with advances in machine learning and large-scale data analysis 5 7 , there is exciting potential to integrate narrative understanding with precision medicine approaches—creating truly personalized care that addresses not just biological symptoms but the full human experience of living with chronic rheumatic conditions.
In the end, the message from the research is clear: for women navigating life with chronic rheumatic conditions, everyday activities are never just activities. They are stories—stories of struggle and adaptation, of loss and creativity, of limitation and, ultimately, of meaning reclaimed in the face of challenge.