Lupus and Body Image

By: Emily Delzell 

Lupus can touch all areas of your life, affecting you physically, emotionally and sexually. Your work, relationships and hopes for the future can all be impacted. Lupus is often diagnosed in your 20s or 30s. And it occurs 10 times more often in women than in men.

“Lupus often comes at a time when patients are trying to settle into adult life. They are training for jobs, dating, thinking about having children. And suddenly they need to go the doctor all the time and take medication for the rest of their lives,” says rheumatologist Meenakshi Jolly, MD, in the Division of Rheumatology at Rush Medical College in Chicago.

“Tiredness, pain, poor sleep and depression are all common. Lupus can also drastically change one’s appearance. Patients can have hair loss, rashes and scarring, as well as medication side effects like weight gain, hair loss and stretch marks,” says Dr. Jolly, who has led a number of studies on body image in people with lupus.

Most women with lupus can get pregnant and have healthy children, but the disease may complicate the process. Pregnant women with the condition often need extra monitoring and care.  

All these issues may feed the poor body image that affects many people with lupus.

“When you feel poorly about your body and its ability to do normal things, it may lead to fears of being judged and to social isolation,” says Dr. Jolly. “You may decline invitations and skip activities, for example, so friends call less and less. Social support is very important to help cope with the stresses and challenges of living with a chronic illness. We know that people who do the best are the ones that have the most social support.”

A negative body image also increases vulnerability to emotional distress, anxiety and depression. A 2019 study published in Lupus found that body image issues can worsen depressive symptoms in people with lupus.

Intimacy can also suffer when people feel shame or fear of judgment about their bodies. A 2015 Journal of Immunology Research study that found impaired body image was one of the most powerful predictors of sexual problems.

“Educating friends, family and sexual partners about your condition can help them understand and validate your experience,” Jolly says. “Sexual health problems, for example, may be improved by something as simple as using lubrication or alternative positions.”

She also advises discussing any health concerns with your doctors, including intimacy. “Many physicians may not be trained or feel comfortable in discussing sexual health. But once they know of your concerns, they can refer you to the right resources to get you help,” she says. 

More ways to boost body acceptance:

• Acknowledge and validate your feelings. Denying them means you’re denying yourself.
• Cultivate self-compassion by asking yourself things like “What would you say to a friend in this situation?”. Greater self-compassion leads to a more positive body image and a healthier mental state.
• Reconnect with people and activities that give you pleasure. 
• Commit to your body in positive ways, such as by eating well and making time for hair and skin care. 
• Surround yourself with friends and family who support, respect and encourage you.
• Seek a referral to a mental health professional if your disease or body frustrations trigger distress, anxiety or depression.