What is lupus?

Lupus is an autoimmune disease accompanied by chronic widespread inflammation — a disease that has proven in the past to be fairly difficult to understand and control. There are several types of lupus, with systemic lupus erythematosus (SLE) being the most common form, and treatment is based on each individual’s unique case and needs.

The word lupus means “wolf” in Latin, and erythema is a Greek word for “blush.” Since lupus is often accompanied by a characteristic rash on the face, the name may derive from a physician who thought it looked like a wolf bite or wolf fur — at least, that is a common story! But the rash on the face is better known today as a “butterfly rash,” as it extends over nose on both sides of the cheeks in the shape of a butterfly. The types of the disease can range from just the skin rash to a much more serious manifestation of systemic inflammation that damages major organs, most often the kidneys or lungs.

The good news is that while the incidence of milder stages of the disease has increased dramatically (it’s unclear why), the late stages have decreased. For many lupus patients, the symptoms of lupus are uncomfortable, but manageable.

The exact causes of lupus are still unknown to us, though at least two dozen genes have been found to contribute to the disease, as do multiple environmental factors. In the US, approximately 80–90% of lupus cases are women, making lupus about eight times more common in women than in men. Certain ethnic groups are more predisposed toward it, and rates of lupus can vary depending on where you live as well.

Lupus symptoms and diagnosis

Not everyone with lupus has the same symptoms, and one of the most heartbreaking and aggravating aspects of lupus is that since the early symptoms can appear “mild” to a doctor or healthcare practitioner, women with lupus are often labeled as “chronic complainers” and allowed to get sicker before they receive their diagnosis. We always shake our head at this — not only because women with a genuine illness that can be treated aren’t being taken seriously enough by their doctors, but also because not listening to a patient’s concerns can have dangerous consequences. And it just doesn’t have to be this way.

Unfortunately, there is no simple diagnostic test for lupus. To be given an official diagnosis of lupus, you must meet 4 of 11 criteria:

• Face rash over the bridge of the nose and spreading across the cheeks
• Scaly rash anywhere on the body
• Any rash that appears after exposure to the sun
• Painless sores or ulcers in the mouth
• Any pain, stiffness or swelling in multiple joints of the body
• Swelling of the linings around the lungs or the heart
• Kidney disease
• Any neurological disorder, such as seizures or psychosis
• Low blood counts, such as low red blood count, low platelet count, or a low white cell count
• Positive anti-nuclear antibody tests, which indicate autoimmune disease
• Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test

As you can see from the list, there are several blood tests that you can get, but many of the tests can come back as “normal,” even when you know things are not 100% right in your health — one reason lupus is often misdiagnosed. However, it is important to get the tests to know where you stand at that moment, and to rule out other problems.

At Women’s Health Network, we recommend that each woman be her own best health advocate — for women with lupus, or who are entering menopause, you can begin by conducting a few interviews with different healthcare professionals. Rather than trying to remember everything off the top of your head, you can try keeping a journal of your symptoms, and bringing it with you to appointments. Try to be as specific as possible, and include the frequency and/or dates on which your flares or symptoms appear. That way, you and your provider can both begin the process of finding the right path for managing your symptoms or flare-ups, and returning your body to a more natural, balanced state.

Focus on feeling better

If we could say just one thing to a woman newly diagnosed with lupus, it’s this: take a moment and set aside the fear and concern about the diagnosis itself. Concentrate on reducing inflammation, and managing your symptoms inch by inch, or one at a time. Through treating each smaller piece or factor, you can achieve the broader, more complete balance to your life again.

Although there is no cure for lupus, women can manage their symptoms and prevent flare-ups by controlling inflammation — and for this, there are several natural strategies to try. In other words, it might help to step away from the word “diagnosis” for a second, just in the same way women at midlife can step away from the word “menopause.” Instead, take a few minutes and think about your symptoms as separate from a designated condition if you can. When we look at our symptoms instead of the diagnosis, then we’re going to figure out what we need to do to ease those symptoms — whether it’s detoxification, soothing digestive imbalance, or above all quieting inflammation — addressing any of these factors (or all!) can help you start to find relief. Because in the end, it doesn’t matter whether you’re a “wolf” or a “butterfly” — it matters only that you feel better!