A woman sitting on a couch, indicating abdominal pain or discomfort, a common symptom of lupus.

Unmasking Lupus: The Invisible Illness

There is no cure for lupus, so getting a proper diagnosis and having the right treatment plan is critical for managing lupus.

The Lupus Foundation of America estimates that 1.5 million Americans are living with lupus. Despite this number, lupus is often considered an invisible illness because many of the symptoms are hard for others to recognize.

Lupus is an autoimmune disease that affects women and certain racial and ethnic groups at a disproportionate rate. As the military and Veteran communities become more diverse, both in gender and race, more of its members will be affected by this disease.

Let’s learn more about lupus, its causes and common symptoms, and the treatments that can make the disease more manageable.

What Is Lupus?  

Lupus is a chronic autoimmune disease that can affect many parts of the body. It occurs when your immune system, which normally helps protect your body from infection and disease, attacks its own healthy cells and tissues. This causes inflammation which can affect the skin, joints, heart, lungs, kidneys, circulating blood cells, and brain.

When you have lupus, you may experience periods of illness (flares) and periods of wellness (remission). Flares can be mild or serious and are often unpredictable. However, with treatment, many people with lupus can manage the disease successfully.

Who Is Most at Risk for Developing Lupus?

Anyone can get lupus, but certain people are at higher risk for developing it.

  • Ninety percent of people living with lupus are women.
  • Most people develop lupus between the ages of 15 and 45.
  • Lupus is two to three times more prevalent among African American, Hispanic/Latina, Asian American, Native American, Alaska Native, Native Hawaiian, and other Pacific Islander women than among white women.
  • If you have a family member with lupus or another autoimmune disease, you may be more likely to develop it.

What Causes Lupus?

The exact cause of lupus is unknown, but researchers know that the disease results from a complex interaction of certain genes and environmental factors, including:

  • Sunlight
  • Certain medications
  • Smoking
  • Viral infections like a cold or an illness
  • Immune and inflammatory influences
  • Traumatic injury
  • Physical and emotional stress
  • Exhaustion
  • Chemicals and toxins

Because many of the factors listed above can also be related to military service, such as traumatic injury, exhaustion, exposure to certain chemicals and toxins, emotional stress and more, it’s important for Veterans, especially female Veterans, to pay attention to their bodies and any symptoms they may experience that could be related to lupus.

What Are the Symptoms of Lupus?

The symptoms of lupus vary from person to person and can range from mild to severe. You could have just a few symptoms affecting one area of your body, or you could have several symptoms impacting many parts of your body. For example, someone with lupus may have swollen knees and a fever. Another person may have extreme fatigue or kidney trouble. Someone else may have a rash on the roof of their mouth.

Here are some examples of common lupus symptoms:

  • Painful and swollen muscles and joints
  • Stiffness
  • Fever
  • Extreme or prolonged fatigue
  • A red butterfly-shaped rash that appears on the face across the nose and cheeks
  • Round scaly rashes that can appear anywhere on the body
  • Sensitivity to sun or light
  • Hair loss
  • Sores in the nose and mouth, most often found on the roof of the mouth
  • Change of color in the fingers and toes
  • Swelling in the legs or around the eyes
  • Chest pain when lying down or when breathing deeply
  • Abdominal pain
  • Headaches
  • Dizziness, confusion, or memory problems
  • Depression

These symptoms are the result of the inflammation lupus can cause throughout the body. This inflammation can also lead to more serious problems in your organs, including:

  • Kidney damage, decreased kidney function, and kidney failure
  • Seizures and memory problems due to changes in the brain and central nervous system
  • Heart problems such as inflammation of the heart muscle or the lining around it
  • Blood clots
  • Inflammation of blood vessels
  • Low blood cell counts
  • Inflammation of the tissue surrounding the lungs

What Treatment Options Are Available for Lupus?Close-up of laboratory test tubes labeled "Lupus Anticoagulants," highlighting the diagnostic process for lupus.

There is no cure for lupus, so getting a proper diagnosis and having the right treatment plan is critical for managing lupus.

Diagnosing lupus can be difficult because symptoms are often mistaken for symptoms of other diseases. Many people have lupus for a while before they find out they have it. The Lupus Foundation offers a lupus symptom questionnaire that you can take and share with your health care provider.

There is no single test to diagnose lupus, but your health care provider will start by gathering information, such as a description of your symptoms and your medical and family history. Then, your provider may do a physical exam, complete blood or urine tests, or do a skin or kidney biopsy. Your provider may use any or all these tests to make a diagnosis.

Once you have a diagnosis, you and your health care providers can work together to create a treatment plan that’s right for you. The goals of your treatment plan may include:

  • Controlling or improving your symptoms, such as joint pain, swelling or fatigue
  • Preventing flares and keeping your immune system from attacking your body
  • Protecting your organs from damage
  • Preventing or managing other health problems often caused by lupus

It can take a long time to find the right combination of treatment options. It may depend on your age, lifestyle and what other health conditions you have. However, once you have a good treatment plan, most people with lupus can expect to live long and healthy lives.

What Other Steps Can I Take to Manage Lupus?

Your first step is to create a treatment plan with your health care providers that keeps you as healthy as possible. In addition, there are steps you can take that may help you manage your symptoms and improve your overall health. Here are some ideas to consider:

  • Eat a healthy diet. There is no particular diet recommended for people living with lupus, but eating a healthy diet can improve your overall wellness and help you manage other health conditions. A diet rich in whole grains, healthy proteins and a variety of fruits and vegetables is a good start. If you need help making healthy food choices, connect with a registered dietitian nutritionist through the Department of Veterans Affairs (VA).
  • Take care of your body. When you take care of your body, you reduce the amount of stress you put on it. This may include things like:
    • Get movement that feels right for your body. If you experience extreme fatigue or joint pain, talk to your health care providers about effective and safe ways to move your body, such as walking or swimming.
    • Get enough sleep and rest.
    • Seek preventative care and stay on top of important immunizations. What vaccines are safe to get with lupus? What screenings are important to have?
    • Quit smoking.
  • Consider complementary health care approaches. Talk to your health care providers about complementary ways you can try to manage your symptoms. For example, in addition to your treatment plan, would massage therapy help with swollen joints or muscle pain? Would yoga help with chronic pain or stiffness?
  • Figure out the signs that a flare is coming. If you can, try to spot the warning signs of a flare and see if you can take steps to minimize it. Maybe you’ll spot a trend, like you get them after being out in the sun, after an illness or after several days of not getting enough rest. Maybe you’ll notice a warning sign like a new rash or a bout of fatigue or joint pain. The more you know about when a flare is coming, the more you can prepare and take care of yourself.
  • See your health care team regularly. Stay on top of your treatment plan and discuss any questions or new issues that arise.
  • Create a support system. Living with a chronic condition like lupus can take a toll on your mental and emotional health too. Find people you can rely on to support you and assist you as needed.
  • Get the care you deserve. The right treatment plan is a good first step, but you may need additional support. Living with lupus may cause stress in your family life, your financial situation, and impact your ability to work and socialize. Consider seeking mental health care or joining a support group. The Lupus Foundation of America offers virtual support groups and provides a directory for support groups across the country.

Where Can I Find More Information?

The Lupus Foundation of America provides a lot of great information and resources for people who want to know more about living with lupus. Find answers to frequently asked questions, connect with a health education specialist who can offer free information and resources, hear stories of people living with lupus and much more.

The Veterans Health Library has an article about lupus, including a detailed list of symptoms, its impact on pregnancy, an explanation of common medications used in treatment and much more.

As the military becomes more diverse, it’s important to educate ourselves about diseases like lupus, its impact on our health and wellness, and how to live well while managing it.

Tell us what you think.

* Required form fields

This field is for validation purposes and should be left unchanged.