Nicknamed the “invisible disease”, lupus is an autoimmune disorder that disproportionately affects women and even more specifically, Black women. It occurs when the immune system begins a pattern of attacking the body’s organs when immune cells are inappropriately activated in the body. It’s difficult to diagnose, and when it is, it’s accompanied by major lifestyle changes to help keep the condition under control.

The autoimmune disorder gains its nickname because it’s difficult to diagnose. The standard diagnosis period is 3 to 5 years and is typically longer for Black women.

Lupus looks different from patient to patient and its symptoms tend to ebb and flow. This means that patients who are experiencing symptoms one week may not be experiencing the same symptoms by the time they are able to see their doctor making it challenging to run tests or solidify a cause.

Lupus Warriors, a patient-preferred term, can take steps to help advocate for themselves in medical settings and change their lifestyle habits at home.

Self-advocating about your symptoms

The difficulty in diagnosing and treating patients with lupus normally results in patients feeling like they aren’t being heard by their doctor. Many Lupus Warriors struggle with feeling like their complaints aren’t taken seriously by their health care providers, and it can be easy to find yourself feeling frustrated with the amount of time and self-advocating the diagnosis process takes.

Because symptoms present similarly to other ailments, your doctor may not test you for lupus. Many go through a process of elimination through testing for other causes of the symptoms first.

While it is frustrating to not feel like your symptoms are being heard or go through a trial and error of solutions that don’t work, it is important to find confidence in the fact that the symptoms you’re experiencing are real.

“There were instances where I had to really advocate for myself with some doctors,” said Toya Oglesby, a second-generation Lupus Warrior.

Oglesby has discoid lupus which impacts the skin. She experienced about two to three years of symptoms and doctors’ visits before she was able to get a diagnosis. Throughout this period, there were multiple points where she struggled to keep hope that she would receive an answer for how to keep her symptoms under control.

Leading up to the diagnosis, Oglesby found that it was important to find a doctor that she felt she had a connection with and heard her concerns.

“The rheumatologist I have now is my third one,” she said. “It took a while to find someone who I felt I meshed with.”

A crucial part of getting to a diagnosis is tracking your symptoms, tracking your activities and monitoring what you eat to help spot trends. Some ways you can track symptoms include:

• Using a chart system: The University of Michigan Health System has a tracking chart on their Conquer Lupus website where you can enter the symptoms you are experiencing, the activities you have done, the foods you have ate, and more. The tracker will calculate data to see the changes in your symptoms over time.
• Spreadsheets and documents: Create your own form of a chart using home office programs. Creating your own tracker allows you to tailor it to your symptoms and make changes over time.
• Journaling: Keep a journal of your symptoms and daily activities. Create an entry at the end of each day describing your symptoms and activities of the day to look back on and find trends in symptom behaviors.
• A tracker of your own design: From bar graphs to journal entries, it’s important that your symptoms are being tracked in a way that can be shared with your doctor. Presenting this information to your doctor can help them have a clear understanding of what you are experiencing.

Taking care of yourself

Finally receiving a diagnosis can come with relief along with some major lifestyle changes. It’s important to talk with your doctor about the specific treatments, medications and lifestyle changes that are right for you.

Michelle Kahlenberg, M.D., Ph.D., an associate professor of rheumatology at the University of Michigan Medical School, says some lifestyle changes can help keep symptoms of lupus under control. Those include:

• Exercise: Regular physical activity keeps your body healthy and combats some of the muscle weakness that can come with taking steroids for lupus symptoms. It’s important to make sure that cardio is incorporated into your daily routine. For patients with arthritis, moving your joints everyday can help loosen the fibers in the joints and remove some pain. Listening to your body to know your limits (which can change day by day) is also important.
• Diet: Each patient will have different dietary needs, so it’s important to consult with your doctor when it comes to specifics. A general rule of thumb for Lupus Warriors is to avoid food with chemicals or high amounts of sugar.
• Rest: A common symptom of lupus is fatigue. Whether you’re exercising or just going about your day, listen to your body and don’t push yourself too far. “For patients that are typically very active this can be difficult,” said Kahlenberg. “But powering through and not getting enough rest can make symptoms worse.”
• Avoid nicotine and always wear sunscreen. For all Lupus Warriors, it’s important to not smoke any type of nicotine products and always wear sunscreen. “No matter the skin color, the skin cells in patients with lupus respond differently to UV light,” said Kahlenberg. “It doesn’t matter if they are UV rays from the sun or just an office light.”

These lifestyle changes can be a challenging adjustment, but they don’t necessarily mean giving up all your favorite things.

“I do everything I can to keep a healthy diet, but I love sugar,” said Oglesby. “The rule I live by is everything in moderation except love.”

Kahlenberg also advises against taking any supplements before discussing them with your doctor first.

“There are thousands of articles about over the counter supplements that can help with lupus symptoms. Many of them are not tested, not all of them work, and they can end up making your symptoms worse.”

You’re not alone

Between advocating for yourself and lifestyle changes, it can be hard to keep hopes high when it seems like nothing is working in your favor. Oglesby says this five-step process has helped her understand her disease better:

• Reevaluating after diagnosis: Think about how you would like to move forward with your life. What are activities that are important to you? Are there any areas of pain you would like to focus on?
• Finding useful resources: Do research about any questions you have on ways others have controlled symptoms or kept their hopes up.
• Making a plan with your doctor: After doing research, talk to your doctor about what choices for care are best for you. Listen to your doctor’s suggestions and come prepared with your own ideas to discuss.
• Accepting your new reality: Unfortunately, the ebb and flow of symptoms doesn’t end with a diagnosis. Accepting this can be one of the most challenging parts, but it’s important to remember that it doesn’t mean there isn’t room for growth.
• Emotionally healing: After coming up with a collection of ways to control symptoms with your doctor, look to the future and picture what healing looks like for you. Healing isn’t linear, and comprised of small steps, but it’s possible.

There are lots of community groups and online resources to help Lupus Warriors navigate their experiences and symptoms. The Michigan Medicine Conquer Lupus website is designed to help Warriors learn about their symptoms, including some strategies for managing symptoms like pain and fatigue. The website also provides information about navigating health care and stories from other Warriors like Toya Oglesby, who can help validate their experiences.

Rachel Bergmans, M.P.H., Ph.D., a research investigator in the University of Michigan Department of Anesthesiology, Chronic Pain and Fatigue Research Center who helped lead site development and her team wanted to create a place where Lupus Warriors can find the answers to questions they may be having about their diagnosis.

“Lupus is a condition that can manifest in a variety of ways and be difficult to navigate,” said Bergmans. “Our goal is to help make this process a little easier.”

Before making any lifestyle changes or trying different methods to treat symptoms, make sure to have a conversation with your doctor about what is right for you and your lupus.

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