You Are Your Best Advocate When Managing Lupus
It’s important to take control of your lupus journey, especially as a person of color who may face an uphill battle when it comes to diagnosis and treatment.
Angela Weston, 71, was diagnosed with lupus in the late 1970s. During that time, there wasn’t a lot of information on her condition. Yet early on, both Weston and her husband, Luther, of 47 years, knew that taking an active role would be the best course.
“He wrote [to] the Lupus Foundation and got about a 2-inch stack of information about the causes, how to cope, etc.,” she says. “From day one I made up my mind to do what I needed to do.”
How Common Is Lupus in Minority Groups?
“It took more than 10 years to get a lupus diagnosis,” says Olga Torres, JD, a lupus patient advocate and the northeast region advocacy chair for the Lupus Foundation of America in New York.
Although lupus can affect anyone, the condition happens more often in people of color. And certain racial groups may be more likely to get lupus at a younger age.
“I was told I was taking too many classes and that I should drop one,” Torres explains. “Doctors said I just needed to take it easy. But at some point, I’m wondering, ‘Aren’t you going to draw blood?’” she says.
Studies show that lupus is three times more common in African American, Alaskan Native, and Native American women. And the condition happens two times more often in Hispanic and Latina women.
African American, Alaskan Native, Asian American, and Native American women make up almost 41% of lupus cases in the United States.
After being bounced from doctor to doctor throughout college for her symptoms, Torres finally saw a doctor who took her symptoms seriously, ordered tests, and diagnosed her lupus. By then, Torres says her hair was falling out, she had unbearable pain, and she was close to kidney failure.
“I didn’t know how to advocate for myself back then,” Torres explains. “I was floored that it had taken so long to find out what was going on,” she says.
Lupus Can Present Differently
Lupus is often more serious in people of color. The condition often advances faster in African American people and is nine times more likely to progress to kidney failure.
Just as Torres was adjusting to life with a chronic condition and a busy life as wife and mom, a brain injury led her to rethink her approach. “I dug deep and took stock of my life,” says Torres.
According to the Lupus Foundation of America, lupus ranks as one of the top 10 causes of death among Black and Hispanic women ages 15 to 44.
Now, Torres teaches doctors and other health professionals at Columbia University how to use narrative medicine. She says it’s an art that uses storytelling to help doctors and patients get better at talking to each other.
“It’s so important for health care providers to truly listen to their patients,” explains Torres. “I’m not able to practice law anymore, but I feel this is my way of giving back—sharing my health journey and helping providers understand the role they play.”
You Are the Best Advocate
Understanding how to advocate for yourself as a person of color with lupus is key.
“Being a complex disease, it can take a very long time to get a diagnosis of lupus,” explains Khadija Dantata, MD, a health specialist with the Lupus Foundation of America who works with lupus patients across the country.
Sharpening your communication skills can help you advocate for yourself along your lupus journey. Many times you’ll need to find a rheumatologist, which is a doctor who specializes in treating autoimmune conditions like lupus.
“On average, it can take about 6 years for a patient living with lupus to get a confirmed diagnosis that they have lupus,” says Dantata.
Another way to self-advocate is writing things down. Start by writing down your symptoms and logging any medicationside effects. This can help you feel more empowered and make it easier to talk with your doctor.
Keeping notes about changes in your lifestyle or daily habits can help you and your doctor better understand the full scope of your condition.
“Lupus is a very complex disease. It is differential, meaning no two people may present with the same symptoms. One person can come to us having fatigue as their most important symptom, while another person can have joint pain,” says Dantana.
The Power of Your Voice
Learn to say “no” by telling your loved ones what you can and cannot do. This means speaking openly about how you’re feeling and setting boundaries. Do not hesitate to speak up and tell your doctor if you feel like your symptoms are being dismissed.
“My doctor would tell me I had a mild form of lupus,” says Weston. “This really bothered me because my lupus didn’t feel mild to me.”
Tell your doctor if you feel that you are not being treated fairly due to your race or gender. This may help your doctor adjust their approach.
Weston says her doctor apologized. Her doctor explained that what he meant was that her lupus didn’t impact her organs, like her kidneys or liver.
“Instead of being mad, I’m glad I spoke up and told him it bothered me,” she says. “Now I’ve had him for more than 20 years and he’s also listed as a top doctor for lupus!”
Get a Support Boost
A great way to self-advocate is to educate your loved ones about lupus. This helps your friends and family understand how they can best support you.
“My husband is a great support,” says Weston. “He knows that I need to stay active to manage my lupus, so he’ll ask, ‘Have you walked today?’”
You can also get help through support groups that share experiences, resources, and opportunities to network with other people living with lupus. These support groups can help you feel empowered to advocate for yourself.
Weston has also had to learn to speak up when it comes to her lupus. “I requested to work indoors when I was a gate agent at the airport,” she says.
Learning about your disability rights and workplace accommodations or changes under the Americans with Disabilities Act (ADA) can help you advocate for yourself. Keep it simple: Talk about the help you need to get a more supportive work environment.
“I’ve also had hard conversations with my doctor about medications because I don’t like to be on a lot of them,” explains Weston.
Ask your doctor if you might be a good fit for a lupus clinical trial, which can expand your care options. You can also check out the Lupus Foundation of America or go to clinicaltrials.gov to check out current clinical trial offerings.
Talk about your ongoing treatments and any new medications with your doctor. Weston says she’s been fortunate over her years with lupus.
“I have a good doctor and people have been kind to me,” remarks Weston.
Use What You Can
Torres hasn’t stopped advocating for her own health and teaching others.
“I did a TEDx where I shared my acronym for how to approach a doctor’s appointment,” she says. “I came up with an acronym when I get flustered using the word ‘heal’,” Torres explains.
H for Honor. “As patients we should honor our time and our clinician’s time. Come prepared. Write down your questions, symptoms, allergies, etc.,” says Torres.
“You must maximize the small amount of time with your doctor. You don’t have to memorize it. Look up some things but don’t overwhelm yourself. Be ready for the conversation. Sometimes having labs before you come in is helpful. Look at the labs in advance.”
Torres also recommends having somewhat of a medical resume that lists your family medical history, medications, lupus symptoms, and any other medical information.
E for Expert. “Be an expert in your body. Know when your symptoms started. Know your allergies and how your body responds to certain medications,” explains Torres.
A for Assemble. “You have to put together a strong health care team,” says Torres.
“Your doctor has a team and you need one too. It might be people in a network on social media, friends, or family. Find someone to go to appointments with you and to support you in your health care journey.”
L for Listen. Hear what your provider is saying, says Torres. “Do not leave your appointment without getting most of your questions answered. We all know how hard it can be to get a follow-up appointment.”
“You know your body best,” says Torres.
Show Sources
Photo Credit: E+/Getty Images
SOURCES:
Angela Weston, 71, lupus patient advocate, McDonough, GA.
Lupus Foundation of America: “Advancing Health Equity in Lupus,” “Lupus Facts and Statistics.”
Khadija Dantata, MD, bilingual health education specialist, Lupus Foundation of America, Savannah, GA.
Olga Torres, JD, lupus patient advocate, northeast region advocacy Chair for the Lupus Foundation of America, New York, NY; professor of narrative medicine, Columbia University, New York, NY.
Association of American Medical Colleges: “Narrative Medicine: Every Patient Has a Story.”
Arthritis Rheumatology: Prevalence of systemic lupus erythematosus in the United States: estimates from a meta-analysis of the Centers for Disease Control and Prevention National Lupus Registries.
