Understanding the Invisible Impact of Lupus

The physical, emotional and financial toll of lupus can be invisible to those who don’t live with this disease. Lupus symptoms affect each person differently, and it can be difficult for those without lupus to understand how serious it can be.

Here are just a few of the “invisible” things that people with lupus have to cope with.

Fact: Approximately 50% of people with lupus experience some form of organ involvement.

Lupus can affect any organ including the heart, lungs, kidneys or brain in ways that range from mild to life-threatening. For example, if not adequately controlled, lupus nephritis can lead to kidney failure, the need fordialysis or a kidney transplant, and death.

Learn more about how lupus affects the body.

Fact: More than 80% of people with lupus reported feelings of either anxiety or depression.

Many people with lupus experience symptoms of anxiety and depression as a result of lupus. Thanks to the input of lupus warriors from the 2014 UNVEIL survey, we learned that more than 80% of people with lupus reported feelings of either anxiety (90%) or depression (85%).

Read our research article about the ongoing issue of anxiety for people with lupus, and learn more about what your friend or family member can do to manage stress with lupus.

Fact: Extreme fatigue affects 80% of people with lupus. Chronic fatigue is often one of the most debilitating symptoms reported by people with lupus.

Resting the body and mind is critical for people with lupus; fatigue ranked as the top symptom that had the greatest impact on well-being. Lupus fatigue can be so severe that it is difficult to engage in daily activities such as going to work or school or even simple things like taking a shower. This fatigue is even worse when someone with lupus is experiencing a lupus flare. Read about what your loved one with lupus can do or might already be doing to manage fatigue.

Fact: The average financial impact of lupus can be up to $50,000 annually.

Lupus can cause a significant financial burden. The average financial impact of lupus per person can be as high as $50,000 annually in direct and indirect costs, depending on the severity of their lupus. Those with severe disease activity may have increased costs for doctor appointments, hospital visits and treatment.

Expanding access to treatments, including limiting financial burden by reducing out-of-pocket costs, is critical to the Lupus Foundation of America’s mission. Learn more about some financial assistance resources.