Patient Perspective on the Challenges and Responsibilities of Chronic Inflammatory Diseases

Living with a chronic inflammatory disease often involves coping with a variety of difficulties. There isn’t a lot of research that specifically asks patients for their perspectives on these issues, but when they do get published, they can tell us a lot about the struggles these individuals face. The GI Society’s CEO, Gail Attara, is a coauthor of a new study,1 which analyzed the results of a survey that asked Canadians with a variety of inflammatory conditions a variety of questions about how their disease affects their daily life.

The online survey received 636 responses from Canadians across the country. You might have even participated in the survey, as we posted it on our social media platforms. The respondents were predominantly female (80%). Most were from British Columbia (71%), but there were respondents from all other Canadian provinces and two of the territories. In this survey, 42% reported having more than one health condition, which often included multiple inflammatory conditions (such as having Crohn’s disease and rheumatoid arthritis). The most commonly reported inflammatory conditions were joint diseases (86%), followed by psoriasis (26%) and inflammatory bowel disease (18%).

This study focused on analyzing and grouping the open-ended written responses from the survey in order to describe the experiences of individuals with inflammatory diseases. They found that four main narratives pervaded the open-ended answers:

1. Disruptions to Daily Life

Experiences in this group involved having trouble carrying on with normal daily activities, often due to pain and fatigue. Many respondents felt that they had to prioritize necessary activities – such as work and household responsibilities – over social events and leisure time, but even work was something that many struggled to maintain. The inability to participate in life caused many individuals to feel inadequate as partners, family members, friends, and employees.

2. Socioeconomic Vulnerabilities

Since many respondents had difficulty balancing work, health, and family, financial strain was a common occurrence. Many expressed frustrations with the health care system in a variety of ways, including losing access to pensions or resources due to changing definitions of disability or to budget shifts. This frustration extended to feeling as though doctors were not taking them seriously. Medication costs were another major concern for these individuals. These pressures caused the respondents to worry about the future.

3. Visible, Invisible, and Hiding Disability

One major difficulty for many individuals with these diseases is that the conditions are often invisible, meaning that it isn’t obvious from looking at someone whether they have an illness. Respondents expressed feeling marginalized and experiencing problems from a lack of empathy and understanding from friends, family, and employers, who don’t realize that while they might look okay, they were still struggling. For others, particularly those with psoriasis, visible symptoms sometimes negatively affected relationships. Many individuals wanted to be able to hide their disease and participate in activities in the same ways as those without a disease, to reduce social stigma and be treated normally.

4. Staying Positive

The other three narratives spoke of the difficulties that individuals with inflammatory diseases face, but there was another side in the respondents’ disease experience. They shared many stories of resilience, adaptation, and collaboration that improved their disease outcome.

Conclusion

Overall, this study highlights some of the struggles of living with an inflammatory disease, but also shows how those with these conditions find ways to stay positive and overcome complications with the help of a strong health care team.


First published in the Inside Tract® newsletter issue 209 – 2019
1. Macdonald et al. Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study. Journal of Participatory Medicine. 2018;10(4):e10815.
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