Lupus can be tough to diagnose. If you notice a combination of these symptoms, ask your doctor if you could have the disease.
In 2015, when actress and singer Selena Gomez shared that she was battling lupus, it shed light on a commonly misunderstood chronic. Two years later, the conversation around the disease continued after she shared she shared on Instagram that she had to undergo a kidney transplant due to lupus complications. But what exactly is lupus? And how can you tell if you have it?
Lupus, short for systemic lupus erythematosus, affects an estimated 1.5 million Americans, according to The Lupus Foundation of America, and it occurs when something goes wrong with the immune system. Normally the immune system produces antibodies that protect us from viruses and bacteria. But when you have lupus, the immune system can no longer decipher harmful germs from healthy tissue. In turn, it creates a protein that causes inflammation and pain, and damages healthy tissue including the skin, joints, heart, lungs, and in Gomez’s case, the kidneys.
Despite the fact that it can wreak so much havoc on the body, lupus isn’t easy to diagnose, partly because it’s rare that two patients experience the exact same symptoms. “We always say lupus patients are like snowflakes: No two are alike,” says Susan Manzi, MD, director of the Lupus Center of Excellence at Pittsburgh’s Allegheny Health Network, and medical director of the Lupus Foundation of America.
Additionally, the symptoms often masquerade as other illnesses. It’s not uncommon for people to seek medical assistance for something else only to eventually learn they have lupus. “People come in, and they say, ‘You know, I think I must have Lyme disease,’ or ‘I think I must have arthritis,’” because they’re tired and their joints hurt, says Robert Goldfien, MD, a rheumatologist with Kaiser Permanente in Richmond, California. On the flip side, some doctors don’t think about lupus when they see patients with common symptoms like joint pain and fatigue, Dr. Manzi says.
This means getting diagnosed may take a bit of effort and persistence on your end. Never be afraid to ask your doctor “Could it be lupus?”—especially if you’ve noticed a combination of these lupus symptoms. While there’s no cure for lupus, it’s can be managed with a combination of medications and lifestyle changes.
You notice a butterfly-shaped rash on your face
If lupus has a calling card, it’s a sunburn-like rash that stretches across the nose and cheeks, in a shape resembling a butterfly. Its unique appearance is “highly suggestive” of lupus, Dr. Goldfien says. About 30 percent of patients with lupus get this rash, researchers say.
You have a fever that just won’t go away
Fever can be a sign of inflammation, and some patients may be feverish during a lupus flareup. While having a fever isn’t unique to lupus, if you have a fever that you just can’t shake or it keeps returning, it’s best to see a doctor—especially if you’ve noticed any of the other signs of the disease.
You get rashes or sores on your skin after going outside
Very often, people with lupus are photosensitive, meaning their skin is very sensitive to ultraviolet light. Breakouts typically occur on sun-exposed areas of the body, including the face, neckline, and arms. UV light exposure can also set off lupus symptoms or trigger a flare-up of the disease.
Dr. Manzi cautions her college-aged lupus patients who hit the tropics for spring break to slather on the sunscreen before heading outdoors. “They get intense sun exposure, they get a rash, they come home, the rash doesn’t go away, and then boom, boom, boom, all these other things start happening.”