Lupus is a chronic autoimmune disease that can damage any part of the body, including the skin, joints and internal organs. About nine out of 10 adults with lupus are women. Lupus is two to three times more common in African-American women than in white women. Some women have only mild symptoms. But, for others, lupus can cause serious problems.
Gabrielle Davis, a former journalist, found out she had lupus in 2009. She says her diagnosis turned her world upside down, and it took her a few years to feel like her pre-lupus self. Below, Davis, now a lupus activist, talks about her diagnosis, how it changed the way she thinks about herself and what she wants others to know about the disease.
Q: How long have you been living with lupus? And how were you diagnosed?
A: In February 2009 I experienced severe lupus symptoms for the first time. I had shooting pain, fatigue and inflammation [swelling] so bad that it was nearly impossible to walk. The doctors were so alarmed by my high white blood cell count that I was admitted to the ER on Valentine’s Day, when I was supposed to be celebrating with my new husband. I was in the hospital for four days. After a lot of tests, there still wasn’t a conclusive diagnosis. I didn’t learn that my symptoms were being caused by an autoimmune disease until I went to see my primary care physician.
In July 2009, I went through another round of testing with my rheumatologist, a doctor who specializes in the diseases of joints and muscles. That’s when I was formally diagnosed with SLE [systemic lupus erythematosus]. It’s the most common type of lupus. Looking back at my time in college, I was always tired. It was more than your average busy college student tired, but I didn’t know that at the time. I realize now I could have been exhibiting signs of lupus then.
Not too long after my diagnosis, my nephrologist found that lupus affected my renal system. It scarred my kidneys. They don’t work as well as they should now. In March 2013, I was told that I would need a kidney transplant in the future. It was a major blow for me and my husband. For now, my kidneys function well enough for me to live without dialysis or a kidney transplant. It’s a blessing.
Q: What symptoms do you experience now, and how do you manage them?
A: Having lupus affect my kidneys is dangerous medically, but there aren’t any physical symptoms of the kidney damage right now. It’s the debilitating fatigue that makes it rough to balance a career, being married and attend to additional commitments. I manage it by eating well most of the time and exercising regularly. But when it stops me in my tracks, I practice good self-care and I rest. I call in sick from work or cancel my plans for the day.
Q: Has lupus changed the way you think about yourself?
A: The beginning of my journey with lupus was really tough. I was 28, a go-getter by nature and newly married. My lupus diagnosis knocked me off my feet. I was tired and nauseous a lot. I can laugh about it now, but I used pain-relieving creams regularly to ease my inflammation. I felt like a young woman in an old woman’s body.
No one really thinks they’ll experience the “in sickness and in health” part of their vows so early in their marriage, but my husband and I did. I didn’t look like myself. The steroids caused weight gain and I developed the dreaded “moon face.” This happens when the medicines make your face puff up. It’s something all lupus patients know and hate.
I had waist-long dreadlocks I had to cut off because they were falling out. One time I found fallen dreadlocks on my apartment steps. I didn’t recognize myself physically or mentally. I had essentially checked out.
I felt horrible that my new husband had to walk that road with me. Honestly, it took a few years for the pre-lupus Gabrielle to show up again. It took ongoing love and support from my husband, counseling and encouragement from friends and family. We’re still navigating a road neither of us signed up for. We also want to start a family. But with my kidneys in the shape they’re in, we have to postpone and carefully plan what we’re going to do.
Now, I can honestly say that lupus brought out a fire in me that I never knew existed. I’ve always been one to persevere, but having to fight a disease took it to another level. There’s a saying, “You don’t know how strong you are until being strong is the only choice you have.” My faith in God and the determination to carry on has gotten me here. I’m able to exercise up to four times a week, and I’m in better shape than I’ve been in my entire life. I’ve also gained a new perspective. I’ve learned not to sweat the small stuff as much. I don’t wish lupus on anyone. It’s a hard disease to navigate, but I can’t say I’d be as physically or mentally healthy if I wasn’t faced with beating this disease every day.
Q: The holidays can be a tiring and stressful time of year. What can women with lupus do to ensure they continue to prioritize self-care?
A: These are my best pieces of advice:
Schedule time to rest in the midst of the madness. Whether it’s taking a nap or enjoying the silence, do whatever you need to do to relax. And let your family and friends know that you need this time. Don’t try to be Superwoman. That’s not helpful for you or them.
Communicate with family and friends. Let them know that you need time to slow down and rest. They aren’t mind readers. You have to communicate your needs.
Delegate, delegate, delegate. You don’t have to do it all. Pacing yourself and splitting up holiday duties is a win-win for everyone. Can someone else host the family this year? Can someone else go to the store or bake the pies? How can you truly enjoy your family and friends if you’re worn out and fatigued from trying to do everything on your own?
Q: What role can partners and family members play in helping women with lupus manage stress?
A: I feel most supported when the people around me take a genuine interest in my well-being and step in without having to be asked. My husband is awesome about asking me if there’s anything he can do to help around the kitchen or run errands. It’s been a great relief to let down my guard and allow him to help. He’s also good about stepping in if I butt heads with that one annoying family member. Everyone has one.
Q: Will you tell us a little bit about what you do to raise awareness about lupus?
A: I launched Lupus Sistas in 2013. My mission is to spread awareness not just about lupus facts but also to share my everyday experiences, to put a face to the disease. I share the ups and down of tackling life issues as a lupus patient.
I also have a passion for spreading lupus awareness among black women, the group most affected by lupus. Lupus is two to three times more common in black women than in white women. Lupus is also more common among other minority groups. I love going to health fairs in these communities to educate women on how to shed light on this disease and offer support. I think offering answers and support to the communities most affected by lupus is a win for the entire lupus community.
Q: What do you want people to know about lupus?
A: In many but not all cases, lupus is an invisible chronic illness. Because many people with lupus “don’t look sick,” I’ve found that their illness is not taken seriously. I’ve heard of people being accused of lying about having an illness by those closest to them. It can be very hurtful. There’s a need for a better understanding of what living with a chronic illness looks and feels like.
Q: What’s your advice for other women living with lupus?
A: In some communities, there’s a belief that because lupus affects your immune system, it’s related to HIV and AIDS. It’s not. In lupus, your immune system is overactive. In HIV and AIDS, the virus attacks your immune system so that it doesn’t work very well. I wish there wasn’t a stigma around HIV and AIDS. The stigma not only keeps people with HIV from getting care, but also keeps people with lupus from getting care. Instead of getting the treatment, education and support they need, people with lupus suffer in silence. These health fairs are ground zero for dispelling lupus myths.
I also want women to know that being diagnosed with lupus is not a death sentence. Life will change, but with good self-care, healthy eating habits and moderate exercise, life with lupus can be enjoyable. And last but not least, you must learn to be your own advocate. When you take ownership of your health—educating yourself, following your treatment plan, et cetera—you’ll be amazed at what you can accomplish.