Newly diagnosed with lupus? Start here.

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.

Here is some more advice and resources from support groups, our health educators and Lupus Foundation employees who are living with lupus themselves.

Find your care team

Doctor’s appointments and finding the best care for you are facts of life with lupus. Seek referrals from your primary care physician or other trusted healthcare professionals. A strong doctor-patient relationship is important and will help you to better manage this disease. It may take some perseverance, but it’s worth the work to make sure you have the care team that’s keeping you and your needs in your battle with lupus as a top priority.

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.

Understand the disease

Lupus is a complicated disease. It can take an average of nearly six years for people with lupus to be diagnosed, lupus can affect any part of the body, and, maybe most importantly, lupus is different for every person that it affects. For a disease that is still so mysterious, it may feel like a big task to “understand” lupus. But start with the basics, and keep reading, searching and learning.

Understand your medications

It is important that you understand your medications. What are they for? What are the doses and how to take them correctly? Be sure to ask your doctor or pharmacist if you don’t know the answer to these questions.

There are three medications specifically approved for lupus, but many more are used to treat and ease lupus. Work with your healthcare team to make sure that you’re using the best medicines for you. Be sure to talk  with your doctor about your medications and any concerns you may have. Staying on top of your medications is a good way of managing lupus but keep in mind that your treatment plan can change depending on how you respond to it. 

Even if you’re newly diagnosed with lupus, you still have a story to tell and experiences to help others learn from. You can be a part of a clinical trial, use your experience to help inform research with RAY, or share your story of diagnosis. Each person who shares their unique experience to lupus research moves us closer to a future where lupus is better understood, managed and treated.