If you’ve ever watched an episode of Grey’s Anatomy or heard Lady Gaga talk about the inspiration for her album Joanne (it was inspired by her aunt, who passed away due to complications from the autoimmune disease) chances are, you’ve probably heard of lupus. But how much do you actually know about the somewhat enigmatic disease?
According to the Lupus Foundation of America, lupus affects over 1.5 million Americans, yet research done by the Lupus Foundation shows 63 percent of Americans surveyed “knew little or nothing about this disease and its symptoms beyond the name.” But don’t worry — class is now in session, and we’ve got you covered with everything you didn’t know you needed to know about the disease.
1. First, what is lupus?
Lupus is an autoimmune disease. According to the Lupus Foundation, because the symptoms last for longer than six weeks and often persist for years, it falls under the category of a chronic disease. It can also affect nearly any part of the body. With lupus, your body’s immune system has difficulty telling the difference between foreign invaders (like bacteria and viruses) and healthy tissue, which leads to inflammation and pain in various parts of your body. This can ultimately cause organ damage in more serious cases.
Lupus primarily affects women, although men get the disease as well. Women of color are affected at higher rates, with minority women falling ill at younger ages, developing more severe illness, and experiencing a higher mortality rate.
2. There’s more than one kind of lupus.
Though we typically just hear the term “lupus” and assume it refers to one singular condition with a definitive set of symptoms, there are actually four types of lupus: systemic lupus erythematosus, cutaneous lupus erythematosus, drug-induced lupus erythematosus, and neonatal lupus.
The most common type is systemic lupus erythematosus, known as SLE for short. When you hear people refer to “lupus,” that’s usually what they mean. SLE can range from mild to severe. Next, there’s cutaneous lupus erythematosus, which is limited to the skin and causes various lesions and rashes. It should be noted that people with systemic lupus can have skin involvement as well.
Then there’s drug-induced lupus erythematosus, which occurs when prescription drugs cause a lupus-like disease. Luckily, in this case, symptoms will usually subside within six months of stopping the medications. Lastly, there’s the rare neonatal lupus, which is not a true form of lupus. It occurs when a woman with lupus is pregnant, and her baby is affected in utero by her lupus antibodies. On some occasions, these babies are born with a serious heart defect. Thankfully, most mothers with lupus are able to have safe pregnancies, and their babies are born totally healthy.
3. Lupus is not contagious.
Lupus is not contagious, nor is it sexually transmitted. You can’t “catch” lupus from someone else. A study regarding the perspectives and experiences of those living with lupus has shown that many already feel stigmatized by their experiences with the disease, and that it has a “severe and pervasive impact on patients’ self-esteem and independence.” The authors conclude that lupus is “trivialized, misunderstood, and stigmatized by their family, friends, and physicians, which intensifies their sense of isolation.” It’s not hard to see how erroneously believing lupus to be sexually transmitted or contagious could easily lead to misunderstandings, stigmatization, and further isolation amongst peers or in relationships.
The stigmatization of illness is also associated with higher rates of depression in women with lupus, which is all the more reason for those living with the disease to make sure they aren’t isolating socially, and ensure that they’re surrounding themselves with a strong support system that understands lupus.
4. The symptoms mimic those of other diseases.
Each case of lupus presents differently and it can often mimic other illnesses, such as fibromyalgia or rheumatoid arthritis, which is one of things that makes it so enigmatic and difficult for practitioners to diagnose.
“Lupus can affect any part of the body. The most common manifestations are joint pains with evidence of inflammation like redness, swelling, warmth, and different types of rashes on the skin, which can be exacerbated by sun exposure. However, lupus can also cause inflammation in the kidneys, around the heart or lungs, or even the brain, abnormalities of the blood cells, and a multitude of other manifestations,” says Amit Saxena, a rheumatologist and assistant professor in the Department of Medicine at New York University Langone Health.
Other signs and symptoms include a butterfly-shaped rash known as a malar rash, mouth sores or ulcers, headaches, fatigue, fingers turning white or blue when cold, anemia, and fevers. For a complete list of signs and symptoms, visit the Lupus Foundation.
5. It may take a really long time to get a diagnosis.
Because lupus has so many possible symptoms that can imitate or overlap with so many other diseases, it can take a long time to get an accurate diagnosis. This means some patients, unfortunately, have to deal with a medical system that doesn’t believe them at first, discriminates against them, gaslights them by telling them their complaints are “in their head,” or pushes them off from specialist to specialist in search of a diagnosis as they suffer from a very real disease with potentially serious consequences.
“Some of the symptoms of lupus can occur in many other diseases, such as fatigue, fevers, brain fog and confusion, and hair loss. Primary care physicians may consider more common causes of these symptoms before considering lupus as a possibility,” says Saxena.
According to stats from the Lupus Foundation, it took people an average of six years from the onset of symptoms to be diagnosed, with over half (55 percent) needing to see a whopping four or more different healthcare practitioners before they received an accurate diagnosis. A large majority of patients (63 percent) reported being given an incorrect diagnosis along the way.
This information greatly contradicts what the [general public believes](https://www.lupus.org/resources/lupus-facts-and-statistics) about the care lupus patients receive; when surveyed, over half of respondents believed that lupus could be diagnosed in only six months or less.
6. Lupus can take a huge toll on a person’s mental health.
Being chronically ill can greatly impact your mental health. Some stats suggest that up to 60 percent of people with chronic illness experience depression.
“Many lupus patients have chronic fatigue and brain fog, as well as complaints of memory issues or confusion. While the exact cause of these symptoms is not clear, a chronic activation of the immune system can deplete the body’s energy supply. Dealing with a chronic disease and the associated symptoms can certainly be a factor in depressed mood, which is common in lupus patients,” says Saxena.
7. This disease can affect people in many ways.
It isn’t hard to imagine that a disease like lupus could wreak havoc on your life in many ways, including in your interpersonal relationships. Intimacy often takes a hit. Fatigue, joint pain, rashes in weird places, ulcers in the mouth or on the genitals.
“Dealing with chronic illnesses, particularly ones that don’t always manifest in outward symptoms (like when the main issues are fatigue or memory issues) can put stress on relationships. Furthermore, the disease most commonly occurs around ages 20 to 30, when many relationships are being formed. Rashes that can be at times disfiguring can be a big stress as well. That said, supportive relationships and the ability to alleviate stress in these types of illness can be a major help,” says Saxena.
8. There is no “cure” for lupus.
There is, unfortunately, no cure for lupus. However, organizations like the Lupus Research Alliance and the Lupus Foundation of America are actively lobbying lawmakers to dedicate more funding to lupus research and just won big recently, as the House of Representatives approved $17.5 million in lupus-specific research programs for 2020 this past June.
9. Treatments are incredibly limited.
Saxena admits that the treatment options for lupus are very limited: “There is no cure for lupus at this time, so our goal is to put the disease into remission. When inflammation and symptoms are acutely active, we use steroid medications such as prednisone to decrease symptoms. However, there are many long term side effects of these medicines, so the goal is to quiet the overactive immune system with immunosuppressant medications. There are only a few options for treatment, however, and most are medications that were initially created for other diseases. There is a major focus on developing novel, lupus-specific medications that is ongoing.”
Some of the drugs used to treat lupus include chemotherapy drugs that were originally designed for cancer, and anti-malarial drugs.
10. It’s astronomically expensive to have lupus.
We all know healthcare is ridiculously expensive in 2019, but it’s really expensive to have lupus. The Lupus Foundation estimates that each patient loses $20,000 a year in healthcare and lost productivity. Other reports indicate annual costs of up to $35,000 a year. Additionally, lupus primarily affects women (hello, wage gap) and disproportionately affects women of color (in fact, it’s two to three times more prevalent amongst women of color). It’s basically unaffordable to have this disease.
Benlysta, an immunosuppressant for lupus, costs approximately $35,000 per year, and can have some hefty patient co-pays. My own experience with Benlysta — or “Benz”lysta, as I call it, because it costs basically as much as a Mercedes-Benz — is such that when my insurance company started charging $1,700 a month for the auto-injectors, I went without medication for around six months because I couldn’t afford it. I had to have a port surgically installed so I could receive the drugs via an IV infusion instead.
11. Your loved one will have unique needs, and it’s important to understand them.
Selena Gomez has been vocal about her struggles with lupus, and had to have a kidney transplant. But the truth is, not all of us with lupus will have kidney involvement, known as lupus nephritis.
Saxena sums it up: “Lupus can mean different things for different patients; some can have mild symptoms that are only limiting in minor ways, while others can have severe, life-altering disease. There is a need for a better understanding of the disease among the public and increased funding for research so we can develop new medications that can be tailored to each particular patient.” Rather than assuming everyone with lupus needs the same thing based on what you’ve seen in the media. asking your loved one what they need is important.