This year during World Lupus Day, the World Lupus Federation released the results of a large-scale international survey revealing that low awareness of lupus results in public misconceptions about the disease. The lack of understanding contributes to the stigmatization of people with lupus, often leaving them feeling isolated from family and friends.
Isolation is a major concern for people with lupus. Because there often are few outward-facing symptoms of lupus, people living with the disease appear to be healthy.
Very often they hear, “But you don’t look sick!” Most people don’t understand the unpredictable cycle of disease flares when people are very ill, and the periods when the disease is quiet, mistakenly called remission, when they are relatively healthy and can engage in activities of daily living.
People with lupus understand too well the unpredictable nature of lupus. They can feel fine one day and be in bed the next day, barely able to move. People unfamiliar with lupus may think the disease isn’t real or that the person is just lazy, depressed or seeking attention.
This skepticism expressed by friends and even other family members can lead to people with lupus withdrawing from social interaction, rather than dealing with the negative attitudes of others.
During April 2017, the World Lupus Federation conducted a Twitter poll to learn what people with lupus fear most about living with the disease. Almost half (43%) of people living with lupus indicated they worry the most about physical inactivity and social isolation due to the debilitating effects lupus has on the body. Nearly half (47%) of the participants also felt that the impact lupus has on daily living is most misunderstood by their physician, while almost one-third (30%) believed that the emotional impact is most misunderstood.
The social and emotional burdens of lupus are hard to measure, but they are often equally as devastating to a person living with the disease as the physical and economic hardships lupus presents.
There have been positive moves to address the emotional and social burdens of lupus. Several pharmaceutical companies recognize that caring for patients with lupus involves more than just providing effective therapies. They are beginning to study how they can contribute to a better quality of life through a combination of medications and by providing emotional and psychological support enabling people with lupus to enjoy the full quality of life they experienced before the onset of lupus.
That assistance will be welcomed by the more than five million people around the world who are living with this misunderstood and unpredictable disease.
World Lupus Federation Coordinator