Improving Body Image in Women with Rheumatoid Arthritis

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Rheumatoid arthritis is the most common form of rheumatic disease and affects more than 690,00 adults in the United Kingdom alone, the majority of whom are women. Symptoms include pain, swelling, and stiffness in the muscles and joints, decreased range of motion, and fatigue. Rheumatoid arthritis and associated medications can also cause visible changes to the body, such as swelling and visible difference of the hands and feet, weight gain, change in posture, and hair loss. Thus, rheumatoid arthritis can impact both the functioning and physical appearance of the body. Despite this fact, research investigating body image within the context of rheumatoid arthritis is extremely rare.

My colleagues and I at Maastricht University (Netherlands), the University of the West of England (UK), and the University of Bristol (UK), in collaboration with the National Rheumatoid Arthritis Society (NRAS; UK), decided to do something about this: We conducted the very first experiment to test an intervention programme for helping women with rheumatoid arthritis to feel better about their bodies.

Why is body image important?

According to a report by the NRAS, 72% of women state that their rheumatoid arthritis negatively affects how they feel about their body some or most of the time. Further, body image is worse among women with rheumatoid arthritis compared with healthy controls. In women with rheumatoid arthritis, poor body image has been associated with higher levels of depression, lower self-esteem, diminished quality of life, and decreased physical functioning. Body concerns can also encourage maladaptive behaviours such as abandoning the use of physical aids, concealing the body, or avoiding social situations. These behaviours could reinforce body concerns and impact adjustment to, and management of, rheumatoid arthritis.

Thus, poor body image is prevalent among women with rheumatoid arthritis, and can negatively impact their well-being. Yet, techniques to improve body image had not yet been evaluated among women with rheumatoid arthritis, and are not currently part of routine treatment – despite reports that patients wish their health care providers would address their body concerns. Indeed, patients have expressed that “doctors care for your body but don’t care how you feel about your body” (Jolly, 2011; p. 356).

The experiment

We recruited 84 women between 22 and 70 years old via the NRAS and other related charities. These women were randomly assigned to our online 1-week intervention programme or a waitlist control group.

The aim of our intervention programme, called Expand Your Horizon: More Than My RA, was to help women to focus on their body functionality, and why it is meaningful to them. Body functionality refers to everything that one’s body is able to do, rather than how it looks. It comprises a wide variety of body functions, relating to physical capacities (e.g., walking, swimming), internal processes (e.g., digesting food, healing from a wound), bodily senses and sensations (e.g., seeing, experiencing pleasure), creative endeavours (e.g., singing, gardening), communication with others (e.g., giving someone a hug, eye contact), and self-care (e.g., sleeping, eating).

It may seem counterintuitive to ask women with rheumatoid arthritis to focus on what their body is able to do. After all, rheumatoid arthritis affects the physical functioning of the body, potentially limiting what individuals are able to do, or changing how they used to do things. Rheumatoid arthritis may also take their bodies further from the narrow societal beauty ideal, encompassing a fit and able body. Research has shown that this can lead to women feeling frustrated and unsatisfied with their body. However, the aim of our programme was to help women with rheumatoid arthritis to focus on the functions that their body is able to do, despite symptoms. In addition, women were encouraged to focus on their body functionality more holistically. That is, not only related to physical capacities, but also related to all of the other areas of body functionality from which they could derive meaning, pleasure, or satisfaction (e.g., bodily senses, creative endeavours, communication with others). In our prior research, this approach was found to be effective at improving body image among women with a negative body image (but whom did not have rheumatoid arthritis).

During the intervention programme, women completed three 15-minute writing exercises, each asking them to describe the various functions of their body, and why they are personally meaningful. For example, one might write, “My body is able to give my partner and children a hug, which allows me to express my love for them,” or, “My body is able to sing and hear music, which allows me to experience joy and express my emotions.”

Before and after the intervention programme, as well as at 1-week and 1-month Follow-Up, participants completed questionnaires assessing their body image and other outcomes relevant to rheumatoid arthritis (depression, anxiety, disability). Participants in the waitlist control group completed the questionnaires only, but were invited to complete the intervention programme at the end of the study.

The results

Compared to women in the waitlist control group, women in the intervention programme experienced improvements in various aspects of body image. For example, they felt more satisfied, appreciative, and grateful for their bodies. These effects were found immediately after the intervention programme, and persisted to both 1-week and 1-month Follow-Up.

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In their open evaluations of the intervention programme, many women expressed that it helped them to focus more on the things their body is able to do, including the simple things that are often taken for granted. They noted that the programme helped them to be more accepting of the things that their body is not able to do or is not able to do as well as they would like to. They also described that the programme helped them to focus on being grateful and compassionate toward their body, rather than harsh and judgemental. Over 90% of women said they would recommend the programme to other women with rheumatoid arthritis.

We also found that women in the intervention programme experienced lower levels of depression at Posttest and at both Follow-Ups. Women in both groups experienced a reduction in pain-related disability over time, but there were no differences between groups. We did not find any significant changes concerning anxiety or rheumatoid arthritis-specific disability. It could be that the intervention reduced the distress associated with disability, rather than the disability per se. This is a possibility we could test in future research.

Take-home message

This was the very first experiment to test an intervention programme for improving body image in the context of rheumatoid arthritis. Our findings show that women with rheumatoid arthritis can feel better about their bodies by focusing on what they are able to do, and why their body functionality is important to them. These findings are promising because they show that women’s relationships with their bodies can be improved, despite the challenges that rheumatoid arthritis can pose. It is also noteworthy that the intervention programme led to reductions in depression, considering that individuals with rheumatoid arthritis are twice as likely to experience depression compared with the general population, and depression can increase the burden of rheumatoid arthritis on the individual.

Our findings are also important because they point toward one effective strategy for improving body image among women with rheumatoid arthritis, and such strategies are sorely needed. It is hoped that this intervention programme will give patients and health care providers a useful tool to improve body image, as a complement to their existing treatment.

Thank you

We would like to thank the National Rheumatoid Arthritis Society for their help with reviewing the intervention materials and recruiting participants. We would also like to thank the Patient Advisory Group at the Bristol Royal Infirmary for their advice concerning the study and intervention materials. Lastly, we would like to thank all of the women who took part in this study. Without their time, effort, and commitment, this research would not have been possible.

Frequently asked questions

In the course of our research, we have received some questions that may have arisen for you, as well. Do feel free to email me with any other questions that you might have (Jessica.Alleva@maastrichtuniversity.nl), or leave them in the comments section below.

What about men with rheumatoid arthritis?

Body concerns are prevalent among men with rheumatoid arthritis, too, with 48% reporting that rheumatoid arthritis negatively affects how they feel about their body some or most of the time. In future research we will investigate this technique among men with rheumatoid arthritis, as well. We will also investigate whether the intervention programme needs to be tailored to address the potential gender-specific body concerns of men with rheumatoid arthritis, such as perceived loss of masculinity.

Isn’t your intervention programme patronising by telling people to just “think positive”?
The intervention materials were developed in collaboration with individuals with rheumatoid arthritis, as well as with the National Rheumatoid Arthritis Society. Our team also included experts in rheumatology and chronic pain. In the intervention materials, we have made every effort to recognise and acknowledge the unique and difficult challenges that rheumatoid arthritis can pose. Our aim is not to minimise people’s suffering, but rather to help them to also take a moment to reflect on the functions of their body that they may not often stop to think about or appreciate (like we all do). We have also acknowledged that the present intervention programme is not the “be all and end all.” We view the intervention programme as a potentially useful tool that can be used as a complement to existing treatment programmes.

What about symptom flare-ups?

The format of the intervention programme required women to type their responses to the writing exercises. On some days, this may have been challenging for women experiencing symptom flare-ups. In the future, we would like to explore other methods for delivering the intervention, such as allowing individuals to audio-record their responses to the intervention exercises.

Where can we learn more?

To obtain a copy of the published research report and/or intervention materials, please send me an email at Jessica.Alleva@maastrichtuniversity.nl. The reference for the published research report is: Alleva, J. M., Diedrichs, P. C., Halliwell, E., Peters, M. L., Dures, E., Stuijfzand, B. G., & Rumsey, N. (2018). More than my RA: Improving body image in women with rheumatoid arthritis using a functionality-focused intervention programme. Journal of Consulting and Clinical Psychology, 86, 666-676.