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