Newly Diagnosed? You Are Not Alone

When you are diagnosed with lupus, you might feel like your world is crumbling. It’s a mix of confusion, loneliness, anger, and sadness. You are not alone—statistics say that around 16,000 people develop lupus each year. This article unravels 4 tips for newly diagnosed lupus fighters on what to do to monitor and maintain both your physical and mental health.

*Disclaimer:

The information provided in this article is for general informational purposes only and is not intended as medical advice. It should not be used as a substitute for professional diagnosis, treatment, or advice from a qualified healthcare provider. Reliance on any information provided in this article is solely at your own risk.

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Imagine on an important day, the weather forecast said it would be sunny. But when you step out of your house, it begins to thunder and rain. You wonder, “Why today? Why me? I have so many things to do.”

This thunderstorm is an analogy for how being diagnosed with lupus might feel. You have so many years ahead of you, so many things to do. And when you receive your diagnosis, it’s normal to wonder why this had to happen to you.

It’s okay to take a moment and reminisce about the life you used to have, lupus-free. You don’t have to be strong all the time. Sometimes, getting through the day is more than enough. Your struggles are real, despite lupus being called “The Invisible Illness”.

Lupus is an autoimmune disease. It occurs when your body attacks its own tissues and organs. Most of the time, lupus can disguise itself very well, as its signs and symptoms often mimic other illnesses, making it difficult to diagnose. Lupus fighters may experience inflammation and pain in their joints, brain fog, emotional confusion, and other symptoms.

Us Against Lupus has a Resources page dedicated to helping you understand more about lupus.

No, this does not necessarily mean finding your own Captain America. This “Avengers” means a health team. Curate a team of your most trusted professionals to help you whenever you need them. Examples of professionals for your team include:

• Your rheumatologist: A rheumatologist specializes in the diagnosis, treatment, and management of autoimmune diseases. Your rheumatologist should know about your lupus condition the best.

• Your specific specialists: Depending on which specialists you might need according to your lupus case, this may be a neurologist, cardiologist, or pulmonologist.

• Your pharmacist: A pharmacist will keep you updated on your medications. It is important to always consult a professional for your medication.

• Your mental health professional: Being diagnosed with lupus can be a heavy burden on your mental health. A mental health professional can help alleviate your stress.

• Your financial specialist: To assist you with financial decisions and manage health expenses.

Keeping the names and numbers or the contact platform for your health team can be very beneficial.

One target that lupus warriors are fighting for is the remission phase. It is a phase where doctors decide that your lab results are great, and medications can be reduced. Your lab results are key to understanding your lupus symptoms, severity, and treatment options.

Understanding lab results can be difficult, especially when there are so many abbreviations and measurements. This article provides a comprehensive guide to interpreting lab results.

Don’t let lab results stress you out. You don’t have to know everything even the basics are already informative. If you have questions, reach out to your doctor. Over time, you’ll learn more about interpreting lab results and about your own body.

Lupus symptoms can make even basic tasks feel difficult. Internally, you might experience new discomfort or pain, such as constant fatigue, nerve and joint pain, shortness of breath, or brain fog and memory issues. Externally, some might notice a butterfly-shaped rash across the cheeks and nose, hair loss, or rashes triggered by sunlight. Don’t blame yourself for being tired and don't feel like you have to give 100% every day.

After being diagnosed with lupus, your mental health may suffer. Know that it is okay to be sad or angry. It’s also normal to reminisce about the times when you didn’t have lupus. Though you need to also keep trying to make the most of each day, even with lupus, and, though it is hard, accept that life won’t be the same. But never give up on making it as good as it can be.

If you’re ever stuck with negative thoughts, try shifting your focus to something else—something you are able to control. Practice being kind to yourself by saying things like:

• “I’m not alone. I can get through this.”

• “What can I do to make myself happy?”

• “I can’t choose to not have lupus, but I can choose how to take care of myself.”

Practicing such sentences can be very beneficial. In the end, you don’t have to be strong all the time. Being kind to yourself is a good start.

Being newly diagnosed with lupus might make you feel lonely. Seeing people around you live their lives unrestrained by a chronic illness can be hard. But in reality, there are so many people out there facing a similar struggle.

It can get tiring repeatedly hearing condolences or unsolicited advice, when you’d like to be heard but not responded to with predictable and overused words. This is where support groups come in. Hearing responses like, “I agree, I have faced that too,” or suggestions that worked for fellow lupus fighters can be uplifting.

You can find peer comfort from in-person or virtual support groups, online communities, and community events. Talking with others who resonate with you can be the first step to understanding yourself better.

Whether you’re newly diagnosed or just learning more about lupus, know that you’re never alone in this. Every day, people with lupus continue to grow, live, and learn—and so can you.

Lupus | Conditions | UCSF Health

Lupus remission | Lupus Foundation of America

Newly diagnosed with lupus? Start here.