What People With Lupus Need to Know

Lupus is an unpredictable and misunderstood autoimmune disease. It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus has a range of symptoms, and strikes without warning. For some, lupus can be mild — for others, it can be life threatening.

Right now, there’s no cure for lupus. The good news is that with the support of your doctors and loved ones, you can learn to manage it.

Start by learning as much as you can about lupus.

Understanding Lupus

Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system — the body system that usually fights infections — attacks healthy tissue instead. Lupus most commonly affects your skin, joints and internal organs, like your kidneys and heart.

Because lupus affects many parts of the body, it can cause a lot of different symptoms. Since these symptoms can be hard to pin down, many different lab tests play an important role in helping doctors understand what’s happening in your body that can happen with lupus. The results of each test help your doctor get a fuller picture of your health.

Lab tests alone can’t diagnose lupus., your doctor will also consider other signs and symptoms of the disease when making — or ruling out — a diagnosis. Every day, around the world, extensive lupus research is underway. These efforts aim to uncover new treatments, improve diagnosis, and ultimately enhance the lives of people living with lupus.

Find a Treatment Plan that Works for You

Treating lupus can be difficult. It can take months — or even years — to find the right combination of treatment options . Your treatment plan may depend on things like your age, your lifestyle, and any other health conditions you have.

Lupus treatment is different for different people. That’s because no two cases of lupus are the same — each person experiences lupus differently. That’s why it’s so important to work closely with your lupus doctor to come up with a treatment plan that’s right for you.

Your  lupus clinician, a healthcare professional who specializes in diagnosing, treating and managing lupus and related autoimmune conditions, can recommend treatments to help with your specific symptoms and concerns and they can also help you understand the risks and benefits of different treatments.

Keep in mind that while working with your doctor is important, you make the final decision about which treatments you want. The importance of following your treatment plans cannot be overstated. While it’s important to remember that you can change your treatment plan over time if something’s not working well, never make changes to your treatment plan without first discussing it with your doctor.

Work with Your Health Care Team

Knowing how to work with your care team is an important part of being your own advocate. It also means preparing for appointments, communicating openly with your doctor, and sharing your needs with family, friends, or coworkers.

Tracking your health is another powerful tool to stay proactive in managing your lupus. By documenting symptoms, medications, and treatment changes, you can give your doctors a clearer picture of your condition. Journaling or using a symptom tracker makes it easier to notice patterns and stay engaged in your care.

Take Care of Your Mental Health

Taking care of your mental health is just as important as managing the physical side of lupus. Resources like therapy, meditation, yoga, and support groups can help you cope with the stress of the disease. Learning as much as you can about lupus and connecting with a mentor or someone else living with the condition can also provide guidance and reassurance, since everyone’s experience with lupus is different.

Finding the right kind of support can make a big difference. Surrounding yourself with people who understand your journey—whether professionals, peers, or loved ones—can give you the strength and perspective you need to navigate life with lupus.

Daily Living with Lupus

Living with lupus can be challenging, but there are steps you can take to support your health and well-being. Lifestyle changes like sun protection, healthy eating, regular exercise, stress management, and good sleep can help manage lupus. Finding routines that support your body and overall well-being is key.

You may also need support beyond daily health practices, such as workplace or school accommodations, which differ between K–12 and college. Understanding your health insurance can also help you access the care and resources you need.