Self-advocacy means taking an active part in your lupus care. It can mean asking questions, being open about your needs, or tracking your symptoms so you get the best care. About 9 out of 10 people with lupus are women in the U.S. And this autoimmune condition occurs more often in Native Americans, Alaskan Natives, Hispanics, and Black people. Remove any roadblocks that can stop you from getting the best possible care.

Keep a daily symptom diary to bring to your doctor’s appointment. Note when you have pain, where it’s at, and how serious it is. Write down any triggers and log your moods. Make a note of any treatments that did or didn’t help. Also log any thoughts about your sleep, habits, or feelings. If your low on energy, try an app or just text yourself to keep a record.

Ask and answer your doctor’s questions based on how you feel at your worst, not how you feel at the moment. Don’t downplay what you feel at the height of your symptoms. You may look fine, but that doesn’t mean you don’t need care. Ask questions about how your treatment helps you get better. You always have a choice and the right to a second opinion if you don’t feel heard. Trust yourself and what you’re feeling—you know your body best.

Good doctors take the time to listen and explain. Don’t be scared to ask questions. One study found that Black patients with lupus felt more rushed by doctors. And hurried communication about lupus may lower your confidence when making treatment decisions and can worsen your health. So it’s important to take your time and never be afraid to ask questions, especially if you don’t completely understand something your doctor says.

When you visit your doctor, bring a friend or family member. It helps to have another person there for support, to help you remember the information. If you are in the middle of a flare, it’s often hard to stay in the moment. Your person can take notes so you understand what’s being said and done. The other person can also speak up or remember some symptoms that you’ve forgotten.

It can help to talk with others who have lupus and are going through the same things you are. Support groups offer a community with educational programs, conversations, and activities. Groups might meet in person or virtually. There are lupus support groups for everyone. Some groups may be gender affirming, for men, or for Black women. Ask your doctor for help finding a support group that may fit you best.

You might worry about missing work when you don’t feel well. One study found that almost half of Black patients with lupus lost their jobs after diagnosis. Because lupus treatments may not respond as well in Black patients and progresses faster, it’s important to know your rights. You can ask your employer for reasonable accommodations under the Americans with Disabilities Act (ADA).

There are days when you might not have the energy or motivation to go somewhere or do something. It’s OK to say no. Listen to your body and do what makes you feel better. Don’t worry about letting someone down or what others will think. Your body is doing work while you’re resting, it’s healing. So know and respect your limits.

Teach yourself it’s OK to accept help. Life can be easier when you let someone bring you lunch or drive you to work. Sometimes, it can be hard to admit that you need a little extra support. Don’t be afraid to ask for what you need. It might not come easy at first, but when you let others help, they feel like they’re taking an active part in helping you get better. Giving your loved ones a chance to help also allows them to support you.

Clinical trials should test participants similar to the people living with lupus. Trials test if a new medicine can safely help your lupus symptoms get better. In the U.S., Black women make up about 43% of the lupus cases but only 14% participated in clinical trials. There are efforts to sign up more diverse participants into lupus clinical trials. Ask your doctor if you are eligible to join a trial.

Being tired is a common symptom of lupus. You might be too physically exhausted to get out of bed or be so mentally drained that you can't think about a project. Stress and lack of sleep can make fatigue worse. Try to develop a sleep routine and get a good night’s sleep. Try to reduce stress with yoga or meditation. And it might seem counterproductive, but regular exercise can actually boost energy levels.

A lot of people don’t know about lupus is or how you deal with it. They might not understand why you cancel plans or stay in bed for long periods. Explain your symptoms and treatments to close friends and family. It can help them know why you ask for help or need to cancel plans. Help others know more about lupus and allow them to give you the right kind of support.

The signs of a lupus flare can be different for everyone but often include fever, fatigue, and joint pain. You may also get a “butterfly rash,” a rash that spreads across the cheeks and on the bridge of the nose. Some studies show that people with darker skin tones are more likely to get lighter or darker skin discoloration or dyspigmentation. They may also experience rashes on the ears or scalp.