What Living With Lupus Is Actually Like, ICYWW

·6 min read
Photo credit: John Francis
Photo credit: John Francis

From Cosmopolitan

You're probably familiar with lupus thanks to Selena Gomez. Between the announcement of her diagnosis in 2015 and her lupus-related kidney transplant a couple of years later, the autoimmune disease has gotten major media coverage.

But the singer definitely isn't the only one living with lupus. According to The Lupus Foundation of America, 1.5 million Americans have some form of the disease. Oh, and 90 percent of those people are women. Another stat worth noting? Lupus is two to three times more common among women of color than it is among white women.

Now that we've talked numbers, let's break down what lupus actually is. The CDC defines it as "a chronic (lifelong) autoimmune disease that can damage any part of the body." To get more specific, having lupus means that your body's immune system can't tell the difference between viruses, bacteria, and germs and healthy cells, tissues, or organs—so it just attacks everything.

Some of the most common symptoms of the disease include extreme fatigue, pain or swelling in the joints, fevers, and a butterfly-shaped rash on the face, according to The Lupus Foundation of America. But since lupus can affect a lot of different parts of the body, there are a ton of potential symptoms.

That's why to understand what living with lupus is really like, it's best to to talk to people who actually, ya know, live with it. Here, four women share their experiences with the disease.

1. Lupus can be super hard to diagnose.

The symptoms of lupus often mimic those of other conditions, which makes it very hard to accurately diagnose. Sharon Harris, founder and president of Lupus Detroit, says that doctors suspected she had Crohn's disease at first because her lupus was causing gastrointestinal problems. It wasn't until she went to the dermatologist for a rash on her face and encouraged to get bloodwork done that she was correctly diagnosed with both discoid lupus and systemic lupus.

Manya Glassman, a graduate student at New York University's Tisch School of the Arts, has a similar story. When she was 12 years old, she started suffering from joint pain and soreness, which experts thought might be related to Lyme disease. The pain continued until Glassman ended up in the emergency room with kidney failure. At that point, the ER docs were able to identify her symptoms as lupus.

2. Even with medication, you can still experience symptoms daily.

"I experience symptoms of lupus every day," says Jess Goldman Foung, author of the blog Sodium Girl. "The most constant are extreme fatigue, joint pain, skin issues, and chronic migraines as a result of the seizures I had from lupus cerebritis in 2004." She also copes with stage 3/4 kidney disease and adrenal failure as a result of her initial lupus flare up.

Ayanna Dookie, a stand-up comedian and writer, says she usually feels "like the tin man" when she wakes up because her knees, back wrists and hands usually ache. And she notices that if she doesn't stick to an exercise routine, her fatigue gets worse.

3. But it is possible to go into remission.

Glassman considers herself lucky because with her medication, she's been able to keep her lupus in remission for the past 12 years. That said, she notices that if she doesn't get enough rest or spends too much time in the sun she'll start to feel stiffness in her fingers, which she takes as a warning sign that her lupus could be starting to flare. Which brings me to our next point...

4. You have to do a lot to manage your health with lupus.

All four women take medication in order to keep their immune system in check and prevent flare ups, usually multiple medications. Beyond making sure they take their medications regularly, they mentioned routine doctors appointments, regular bloodwork, and lifestyle factors like getting enough rest, exercising regularly, eating a balanced diet, and managing stress as key to managing their symptoms.

Another important part of managing your health with lupus? Trying not to get sick, says Glassman. Because most medications for the autoimmune disease are designed to suppress the immune system, it can be dangerous to get a virus since your body won't be able to fight it off properly.

5. Sometimes it makes you cancel plans.

Harris says that one of the hardest parts about living with lupus is having to cancel plans with friends or loved ones because she feels too fatigued. "[You're] constantly trying to balance work, life, loved ones, and the needs of your body," adds Foung.

6. The medication is expensive without insurance.

Both Harris and Glassman say they're grateful to have insurance because without it, lupus medications like Plaquenil and CellCept can cost hundreds of dollars a month. Harris's organization Lupus Detroit offers emergency financial grants for individuals with lupus that need assistance paying for their medication. She recommends that people look into patient assistance programs as well if they're not able to afford their lupus drugs.

7. Just because you look healthy doesn't mean you are.

"The biggest challenge is that I don't look sick," Dookie explains. "Because of that, people are surprised that I have an autoimmune condition, but they also don't take it seriously because I don't present as sick." Glassman agrees, adding that she thinks about her lupus every day, multiple times a day, but most people in her life don't know that because the disease isn't visible.

8. You can still live a full life while having lupus.

The main thing Harris wishes people knew about having lupus? That you can still experience life to the fullest. "A lot of people don't think that you can live with it. And they think they're gonna die but you can live a full life," she says. "It's something prevalent and something to take care of but it's still not going to stop me from doing anything," adds Glassman.

9. Some people feel grateful for the condition.

Foung says that despite the many obstacles of having lupus, she wouldn't trade her current life for one without the autoimmune disease. "It has made me who I am. It constantly provides me with bigger perspectives and a way to connect with a bigger community than I would have ever imagined," she explains.

Glassman agrees, noting that she's grateful to have gone through the experience of being diagnosed with lupus because it gave her perspective, which allows her to have a more fulfilling life.

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