We deliver workshops and webinars for patients, families, and providers. Learn symptoms, treatments, self-advocacy, and how to support someone living with lupus.

What is 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
• Internal organs, like your kidneys and heart

Because lupus affects many parts of the body, it can cause a lot of different symptoms.

What questions will my doctor ask?

If your doctor thinks you might have lupus, they’ll ask you questions about your symptoms, like:

• What symptoms are you having?
• How often do you have these symptoms?
• When did your symptoms start?
• Does anything make your symptoms better or worse?
• Are your symptoms constant or do they come and go?
• Do your symptoms get worse at a certain time of day?
• Do your symptoms get in the way of your daily routine?

Your doctor may also ask if anyone in your family has had lupus or another autoimmune disease (a disease where the immune system attacks healthy tissue). That’s because people who have a family member with an autoimmune disease may be more likely to develop lupus.

Diagnosing Lupus

Diagnosing lupus can be challenging. There’s no single test that can give doctors a “yes” or “no” answer. Sometimes it can take months—or even years—to gather all the right information.

Making a lupus diagnosis is kind of like putting together a puzzle. Your doctor will look at several different puzzle pieces: your symptoms, medical history, family history, and lab tests. If enough of the pieces fit together, you may be diagnosed with lupus.

Get ready for your appointment

Before your doctor’s appointment, take a few minutes to think through the questions above. Try writing down your answers and taking them with you to the doctor’s office.

Newly diagnosed with lupus? 

Getting a lupus diagnosis can be overwhelming, and not just for the worry about your health. There is so much to learn and do, from deciding whether or not to tell your family, friends and employer that you have lupus, to figuring out how to learn to live with the disease. We’re here to help you through this difficult part of your new life with lupus.

One of the difficult parts can be gathering the information at a high level.

• What kind of doctors treat lupus?

• What medications will I need to take?

• What can I expect?

• What should I watch out for?

• And where can I find support? 

A piece of advice we often hear in our support groups from people who have been living with lupus for a long time: stop and take a deep breath. You are not alone. There are many people here for you. Read up and educate yourself, but take it as it comes.

Take care of your health

Living a healthy life is important for everyone, but it becomes even more important for those with a lupus diagnosis. Be kind to yourself and mindful of your body’s limitations. Some easy steps are to simply be more conscious of the food you eat, get physical exercise, and prioritize your sleep. 

Your emotional well-being is equally important. Learning to manage your stress may help prevent lupus flare-ups. Practicing relaxation techniques, such as mediation or focused breathing, can help you regain a sense of control, especially when lupus brings you discomfort. Consider also seeking support from therapists or counselors who specialize in chronic illnesses to address the emotional challenges that come with this disease. 

Find your support network

There are millions of people living with lupus who have found strength not just from friends and family, but from support groups (both in-person and virtual), events, and communities. 

It’s really important to look for those people in your life willing to help out and be there for you. And keep in mind that they may not always be the people you would guess! Many people will be able to help out in ways big and small, but finding those people who will always be there for you may be challenging, but is so important.

The good news is that, in one of our surveys of people with lupus, most lupus patients (78%) reported that they are coping well with lupus and that their family members are understanding and supportive (72%). In fact, 84% of people with lupus named other family members as their primary support network.

A supportive community can help you cope with the emotional challenges that lupus brings.