Aspiring to work at a major fashion magazine since she was a child, Lauren Finney saw her dreams almost crumble when she was devastated by the diagnosis of lupus about five years ago.
Within weeks of her moving to New York and pursuing a career in the fashion industry, Lauren developed a hard, painful, red and growing rash all over her neck and face—a horror for someone trying to excel in a field so focused on appearances! This first warning sign was followed by extreme fatigue, hair loss and a multitude of doctor’s visits. But, after multiple opinions and doctors, two hospitalizations, a strict medicine plan, and—thankfully—the enduring support of her fashion colleagues, Lauren was finally diagnosed with lupus, an autoimmune disease that impacts the skin, joints, kidneys and other organs.
Lauren may have broken into the competitive fashion world, but not without simultaneously enduring a diagnosis that felt confusing, frightening and dream-destroying. But she is hardly alone; 1.5 million Americans suffer from lupus, 90 percent of whom are young women. Lauren’s work with the SLE Lupus Foundation has allowed her to help others cope and find hope through research that’s taking place. Here, she answers a few questions about her experience:
Q: Why do you think more people don’t know about lupus?
LF: Lupus is such a weird topic. Every time I told someone I have it, they say,” Oh, I know someone who has it…what is that?” People know it’s out there, but what manifests as symptoms and issues in one person is not necessarily the same for someone else. This makes lupus hard to spot, hard to diagnose, hard to treat and hard to understand.
Q: Is the difficulty you had in getting diagnosed with lupus typical?
LF: Yes, it’s entirely common for someone to have trouble getting diagnosed. The symptoms one sees with lupus are often symptoms of other disorders and diseases. It takes on average three years for someone to get fully diagnosed. I feel lucky it only took a year for me.
Q: In your experience, what did you find to be the most common misconception about the disease and how did you overcome it?
LF: A lot of people think that because I don’t always look sick, I must not be sick. While my skin is the main organ affected, I also have joint problems, fatigue and stomach issues. I could have what I call a “great face day” on the outside but be in so much pain internally. People often think that lupus patients are “faking it” or “playing the sick card,” but they have no idea how the disease affects someone.
I try to overcome this disease every day by doing what I love to do—working in fast-paced fashion in New York—and not let it alter my life goals in huge ways. By doing that, I hopefully prove to others that lupus is something totally manageable, once you understand the facts.
Q: You experience an unexpected and painful rash on your face as the first sign of lupus. Is that a common indicator? What else should FITNESS readers look for as a tell-tale sign?
LF: The classic symptoms include a traditional “butterfly” rash across the bridge of the nose, achy swollen joints, extreme fatigue and sun sensitivity. You might have one, none or all. In my case, I had a rash on my face but not in the traditional “butterfly” pattern. It was on my eyelids, across my forehead and lips, and down my neck. I knew something felt off—if you feel something is wrong in your body, you’re probably right and need to get to a doctor. If you don’t feel settled with their opinion, get a second one. I got three before I felt things were on the right track, however life-altering that track might be. There is a simple ANA (anti-nuclear antibodies) test they can run to see if you have the predisposition for lupus and can monitor you accordingly from there.
Q: What have been some of your “life savers,” i.e. how you’ve dealt with lupus?
LF: My number one lifesaver has been an adjustment in my lifestyle: moderation, moderation, moderation! It was so hard for me to learn this at 23 years old, when so many other things seem important. But I learned that my body simply can’t handle certain stresses, whether that be an intense job, an overly aggressive workout or a long night out on the town. So I’m now a freelance fashion consultant, which allows me breaks when I need it, I do low-impact exercises and yoga and I say goodnight to my friends when I feel it’s right to leave.
I also had to change my entire beauty regimen to all sensitive skin products, all the time. My must-have products are what I call the “bottom shelf dwellers”: CeraVe lotion for face and body, Vaseline, Aveeno Baby body wash, Albolene face wash and Tan Towels. Through excessive trial and error, I’ve found these are the only products that work for me. I’ve also learned little tricks. For example, I can’t stand to have water running on my face in the shower because it dries it out so much it’s painful. Now I coat my face in Vaseline before showering so any water wicks away from my face. It sounds insane and is a hassle, but now that I’ve figured it out, I don’t even think about it! I also use Dermablend and Tarte cosmetics exclusively— they’re so gentle and moisturizing, and they cover my rash seamlessly on bad face days.
Q: How can people help in the fight against lupus?
LF: You can help the “life without lupus” campaign most by spreading awareness and information; the more information young women have, the better equipped they are to face lupus.
For more information about lupus or to sign a pledge that you’ll help bring awareness to lupus, visit WorldLupusDay.org.