What Is Lupus?

This informational guide, part of POPSUGAR’s Condition Center, lays out the realities of this health concern: what it is, what it can look like, and strategies that medical experts say are proven to help. You should always consult your doctor regarding matters pertaining to your health and before starting any course of medical treatment.

You may be more broadly familiar with lupus as celebrities like Selena Gomez and Toni Braxton have opened up about their diagnoses in recent years. But what is lupus, exactly? And how does it impact the body? A simple way to explain it: lupus occurs when the immune system mistakes the body’s own healthy tissue as a foreign invader and attacks it, causing widespread tissue damage and inflammation. “The body essentially becomes allergic to itself,” says David Wallace, MD, professor of medicine at Cedar-Sinai Medical Center in Los Angeles and a member of the Lupus Research Alliance board of directors. The causes of lupus isn’t certain either, but experts have a few theories as to why certain people are more impacted than other (more on that below!). For example, ninety percent of people with lupus are women, mostly in their childbearing years, and the condition can be fatal in some instances, according to the Lupus Foundation of America. The are also a handful of other morbidities associated with the condition (like an increased risk of heart disease and pregnancy complications) – so being aware of its symptoms and bringing them to the attention of a doctor is critical. Ahead, experts break down everything you need to know about the condition, including what causes lupus, how lupus is diagnosed, lupus symptoms and risk factors, and treatment for lupus.

What Is Lupus?

Lupus falls within the autoimmune-disease family and “occurs when the body immune system attacks your own tissues and organs,” per the Mayo Clinic. It involves a spectrum of symptoms and can affect several different organ systems, including the skin, heart, kidneys, joints, lungs, blood, and brain (in 50 percent of systemic lupus cases, there is major-organ involvement).

There are two main types of lupus: systemic and cutaneous. “Systemic lupus, the most common type, involves the organs, and people who have it are usually fairly easy for medical professionals to identify,” Dr. Wallace says. “Cutaneous lupus causes achiness and rashy skin.”

Symptoms of Lupus

Lupus symptoms can vary from person to person and day to day, ranging from mild to very severe. Some common symptoms of lupus include:

• Extreme fatigue
• A butterfly-shaped rash on the cheeks and nose
• Headaches
• Low-grade fever
• Swelling or stiffness in the joints
• Chest pain when you breathe deeply
• Dry eyes
• Skin lesions that can worsen with sun exposure
• Fingers and toes that change color with cold temperature or stress

Fatigue is often the most debilitating factor, limiting ability to function mentally and physically. Most people with the illness don’t suffer continuously, though. The disease often alternates between flares, or periods of disease activity, that can vary across a person’s lifetime and with treatment. The flares can range from mild symptoms to downright debilitating.

What Causes Lupus?

No one knows the exact cause of the syndrome, but a combination of factors likely come into play, including genes, environment, and hormones, per the Mayo Clinic.

• Lupus is about 25 percent genetic, according to twin studies, Dr. Wallace says. There are more than 50 genes associated with the condition.
• Environmental factors such as excessive sun exposure, cigarette smoking, infections like Epstein-Barr virus, and exposure to silica dust in agricultural and industrial areas may all increase the risk.
• Certain drugs, including penicillin and other commonly prescribed antibiotics, may trigger symptoms.
• Stress and trauma may be associated with lupus risk. A 2017 study published in Arthritis & Rheumatology found that women who experienced post-traumatic stress disorder after incidents like serious car accidents or sexual assault were three times as likely to have lupus – and those who were exposed to trauma but didn’t develop PTSD had more than double the risk of their nontraumatized peers.
• Estrogen is somehow associated with lupus, doctors believe, given that the condition primarily affects women of childbearing age. Some people with the condition are more symptomatic before their periods or during pregnancy, when estrogen is high. “If you have lupus, you should talk to your doctor about whether it’s safe to use hormonal birth controls or hormone therapy,” Dr. Wallace says. Also, while people with lupus can have normal, safe pregnancies, they’re considered “high-risk pregnancies” because of their condition.

Black people tend to be disproportionately affected by the condition: they are three times more likely to get lupus than white people, per the CDC. Latinx, Asian, Native American, and Alaska Native people are also more commonly affected by lupus. This disparity may be due to several barriers, including language or communication, lack of access to care, inadequate or lack of healthcare coverage, and stress caused by racial discrimination, reports the American Journal of Epidemiology.

How Is Lupus Diagnosed?

Receiving a lupus diagnosis is no easy feat as symptoms vary from person to person and can change over time. “A lupus diagnosis can take up to six years from the time symptoms are first noticed. You might have to advocate for yourself to see a rheumatologist, who is better trained to identify the condition,” Dr. Wallace tells PS. (This short quiz from The Lupus Foundation of America can help you discern whether you should ask your doctor for a referral to a specialist.)

In order to diagnose lupus, experts will use a combination of blood and urine tests, symptom analysis, and physical examination, as there is no one test for the condition. They may also rely on imaging or a biopsy, if the condition is suspected to have impacted your lungs, heart, or kidneys.

How Is Lupus Treated?

Early diagnosis and avoiding triggers for the disease, like excessive sun exposure, can help people with lupus manage their symptoms. There are a range of medications that are used to treat it, from antimalarial medications like hydroxychloroquine to steroids and nonsteroidal anti-inflammatories. Patients with organ-threatening disease might require chemotherapy or other specialized treatments, Dr. Wallace adds.

Lupus is often categorized as an “invisible illness,” and experts emphasize that it’s important to advocate for SLE testing or for an appointment with a rheumatologist when you aren’t finding answers to “invisible” symptoms such as recurrent joint pain, fever, and severe fatigue. “Educate yourself about the disease – lupus advocacy organizations have high-quality information – and call your doctor when you get a fever or swollen joints,” Dr. Wallace says.

Talk to your doctor about diet and exercise, too. Both can help you feel better and function better, but you need to make sure you’re making the best choices for you and your particular condition. “If you’re on steroids, for instance, you want to limit carbs and cholesterol,” Dr. Wallace says. “The best exercise includes range of motion, like Pilates, tai chi, and yoga. Anxiety and stress reduction is vital, too.”

– Additional reporting by Alexis Jones

Alexis Jones is the senior health editor at POPSUGAR. Her areas of expertise include women’s health, mental health, racial and ethnic disparities in healthcare, diversity in wellness, and chronic conditions. Prior to joining POPSUGAR, she was the senior editor at Health magazine. Her other bylines can be found at Women’s Health, Prevention, Marie Claire, and more.

Ginny Graves is an award-winning writer in the San Francisco Bay Area whose work focuses on science, psychology, health, nature, and the human-animal bond.

Related:

• If You’re Constantly Tired, Have Headaches, or Generally “Feel Off,” It Could Be Lupus
• For Years, Doctors Told Me Anxiety Was Making Me Sick, Then I Was Diagnosed With Lupus