Living with RA: Build Your Body Image from the Inside Out

by Sheree Carter, PhD, RN

Living with a chronic condition like rheumatoid arthritis can present challenges to body image; understanding that you still have control over how you feel about yourself is an important step toward well-being.

As women we are uniquely in tune with our bodies, developing from a young age a complex set of feelings and perceptions about our appear­ance and our body’s functionality. The way we feel about our physical appearance—and about others’ reac­tions to the way we look and move— together form our body image.

For most women body image will vary and evolve as we move through different stages of life—from child­hood through adolescence, preg­nancy, menopause, and aging—and will be influenced by both our own internal feelings about our body and physical well-being and by ex­ternal influences, including societal expectations expressed through media. Body image is about much more than how we look; it is our sense of self.

Managing feelings about how we look and about others’ perceptions of our physical appearance may lead us to modify our appearance to meet internal or external expec­tations. We may choose to wear certain clothes, jewelry, or makeup to help us create the image we want to see in the mirror—or to mask an image we’re unhappy with. In some cases, we may retreat and withdraw from the unrealistic expectations, feeling defeated by our body. No matter the many variations in man­aging body image, the fact is that most of us will find ourselves con­sistently working to come to terms with the way our bodies look and function throughout our lives.

But what happens when chronic illness enters into the body image equation? What happens when women must manage changes to their appearance and functionality as a result of disease?

Women diagnosed with rheuma­toid arthritis (RA), a chronic, sys­temic, inflammatory disease that affects every aspect of life, know well the impact of chronic illness on body image. Although early recognition of RA and increased treatment options are changing the impact of the disease on a wom­an’s appearance, women still face significant challenges to their body image. While a woman’s outward appearance may remain “normal” after a diagnosis and when she suf­fers through a flare-up, the physical and emotional impact of the disease leave a lasting mark.

The good news for women living with RA is that all of us have the ability to develop an effective barri­er to the potential damage that the disease can inflict. Though external stressors can be devastating, their impact can be lessened when we develop, nurture, and own a strong sense of self-efficacy.

Self-efficacy is your belief in your ability to achieve your goals and control your environment, and it influences how you think, feel, act, and motivate yourself; it’s your con­trol mechanism. How one’s person­al body image develops and changes over time is directly influenced by one’s internal self-efficacy. A diag­nosis of RA raises questions about how you will control all the various aspects of your life; learning coping skills to manage changes to your body’s appearance and functional­ity can help normalize your feelings and help you build a vital picture of your life with RA.

Build Your Self-Efficacy: Steps toward Empowerment

Draw a line between what is and is not an acceptable limitation with RA.

If fatigue, depression, and joint pain are causing you to take the easy road and stay in bed all day, decide that that is not going to be your “new normal.” Remember that you are self-efficient and can establish your own new normal.

Dial up your positive traits and be­liefs.

Do not accept limitations that your mind and body may impose as the easiest path to take. Instead work within your medical lim­itations and on the advice of your healthcare provider to take small steps toward empowerment to build your self-efficacy. Even though dis­ease changes can sometimes occur faster than the body can accommo­date, know that even small steps can be positive and effective in help­ing you feel good about yourself.

Connect with your healthcare pro­vider.

As a consumer of healthcare, seek out a provider who is comfort­able discussing the topic of body image and sexuality—and who has the time to devote to really listen to your concerns. Your provider should be able and willing to com­municate openly and comfortably and should be free with advice and resources.

Communicate openly with your partner, as well as your health­care provider.

It is understandable that RA can pose significant ob­stacles to sexual health. It is hu­man nature to translate physical restrictions to disappointments and failure, which damper self-effica­cy and destroy body image. One’s sexual life is more than just the act of sex; it’s complex, with differing roles and deeply rooted emotions in play. Open, honest communication with your healthcare provider has the potential to change your per­ception of body image, as well as your adaptability to the impact that physiologic changes may have on your sexuality. Once you’ve com­municated openly, work with your provider to develop a manageable action plan to increase understand­ing for yourself and your partner.

Don’t construct a disease identi­ty around what you cannot do or enjoy.

The disease state is not your identity state. Trust your body to indicate your can-do state. Where RA is concerned, your can-do state is always going to be on a sliding scale and will include peaks and valleys. Educate yourself, identify your level of self-efficacy, and strive to improve it. Be a lifelong learn­er—and share what you find with others.

Sheree Carter, PhD, RN,began her career in orthopedic nursing and found her passion in clinical trials research and rheumatology nursing. She has played an integral part in establishing rheumatology nursing as a recognized specialty practice with the American Nurses Association and has worked to help develop the scope and standards of practice. Dr. Carter has also served as the editor of and a con­tributor to the Core Curriculum for Rheumatology Nursing and has partnered with the American Nurs­es Credentialing Center to launch the certification by portfolio for rheumatology nurses.