When Karon Beasley was diagnosed with lupus and Sjogren’s syndrome in 1998, she immediately became concerned about how the disease and her medications would affect her appearance. “I was suddenly taking over 20 medications each day, and I wasn’t sure how they would affect me,” Beasley recalls.
Classic lupus symptoms, such as a rash on her face and chest, began to appear. Despite continuing her workouts, she put on 14 pounds as a result of the prednisone prescribed to control her lupus. Her face swelled, and she felt out of proportion. “I was aware of what I looked like. I would take pictures of myself and compare them to older pictures. It was difficult.”
Though it wasn’t easy, Beasley was determined to remain positive. “I realized that this was my reality now. I hated looking at my pill tray with the various medications, but I realized, ‘OK, that’s where I’m at now.’
“Most of all, I had to learn I was not my looks,” Beasley says. “I am still a vital person with a lot to contribute. I needed to focus on who I was, not just define myself by a disease.”
Bolstered by supportive family and friends, Beasley took measures to make herself feel more comfortable with her new look. After being forced to stop tanning because of sun sensitivity, she started to use self-tanners to give her skin some color. She cut down on sodium, which helped her battle the weight gain and water retention. When her hair thinned and darkened following chemotherapy, Beasley’s mother treated her to some highlights and a new style that flattered her “new face.”
“I had to start thinking outside the box,” Beasley says. “I was so determined to look my best and be my best. I didn’t want life to pass me by.”
But her favorite piece of advice has little to do with appearance and everything to do with being open to the opportunities life presents. “Never turn down an invitation,” she says. “You never know what doors will be open for you.”
Mind over matter
It’s natural for the physical effects of lupus and the prescribed medications to get you down. “But it’s important to realize that body image and self-esteem are not synonymous concepts,” says Robert H. Phillips, Ph.D., psychologist and founder of the Center for Coping in Hicksville, NY. “You may not be happy with the way your body looks, but it’s up to you how much you allow it to affect your self-esteem.
“You can have a malar rash or prednisone bloat, and it’s unpleasant. But there are people who have the exact same side effects, and it doesn’t bother them or change the way they feel about themselves. Then there are people who have tiny, little side effects, and it blows them out of the water,” he says, adding that the difference is all in the way each person thinks about herself.
“If you don’t feel good about yourself, there are things you can do to change it,” Phillips says. “You need to become aware of the relationship between your pattern of thinking and your self-esteem.”
To develop positive self-esteem, you need to identify negative self-references, such as, “That rash looks disgusting,” or “I hate what this disease is doing to me,” he says.
“I’m a believer in realistic goals. It would not be a realistic goal for someone to say she is going to stop thinking negative thoughts. Instead, you want to teach yourself to recognize these thoughts will happen from time to time, and you need to catch yourself and work on turning them around,” Phillips says.
“Gaining weight was really awful for me,” says Mali Minter, a Green Bank, WV, Spanish teacher who was diagnosed with lupus at age 20.
Now 41, Minter recalls getting fitted for a bridesmaid gown soon after receiving her diagnosis.
“I had to tell the person at the dress shop that I had no idea what size I would be at the time of the wedding,” she says. A few years later, she begged her doctor to allow her to taper off steroids so she could lose weight for her own wedding.
Many women have a hard time adjusting to the weight gain that comes with taking steroids often prescribed for lupus. “I was always a slim person, but I went from 115 pounds to 155–160 pounds in about a month in 2002 because of the high doses of prednisone I was taking at the time,” says Samantha Williams, 33, of Fort Myers, FL, who was diagnosed with lupus at 18. “I became sort of a recluse for a while, because my clothes didn’t fit and I felt ugly.”
But Williams began taking positive steps to make herself feel better about her weight. She took up salsa dancing for exercise and began a regimen of healthful eating. “I try to cook more and eat out less, and if I do eat out, I order baked or grilled dishes with veggies, no potato or pasta,” says Williams, who has lost 25 pounds since making the changes.
Both Williams and Minter lost hair as a result of lupus medication.
“The loss of my hair hit me hardest,” Williams says. “When I was washing my hair, handfuls would come out, but I totally rejected the idea of shaving my head, because I based my beauty on my hair.”
Williams says she now uses a product called Nioxin® that is helping her hair growth.
“I have my ‘fair hair,’” jokes Minter, explaining that her father helped her choose a hairpiece at the Minnesota State Fair. Between the livestock pens and the corn dog vendors, Minter’s dad spotted a booth selling hairpieces and extensions and urged his daughter to buy a wig.
Minter’s sense of humor—and supportive family—go a long way in boosting her self-esteem. “I know it’s all a trade-off. Steroids do terrible things to my body, but the good they do is more important,” she says.
“I’ve always been outgoing, with no self-esteem issues,” she adds. “I’m not the most beautiful girl in the place, but I never disliked the way I looked.”
It’s a guy thing
Hearing you have lupus is always hard. But if you’re a man, the news presents a different challenge.
“A lot of men have huge problems with this,” Phillips says. “Not only are they experiencing all the changes my women patients are, but they’re also questioning their own masculinity, as lupus is too often considered a woman’s disease. Only one in nine [people with lupus] is male.”
Phillips says he encourages his male patients to focus less on gender and more on the ways lupus affects their own lives. “Make it a strategy for improvement, not a comparison to women,” he suggests.
He also believes peer support is extremely important for men living with lupus. “Check with your rheumatologist or the LFA. You’ll find it helpful to talk to other men.”
Accentuate the positive
From wearing hairpieces to dancing salsa, most suggestions for bolstering self-esteem and combating negative thoughts rely on focusing on the positive. You’ll feel good about yourself if you are proactive in your positive thinking and surround yourself with people who do the same.
“I always try to be upbeat,” says Irma Nydia Concepción Ruiz, 43, a Puerto Rico resident diagnosed with lupus in 2006 following a stroke. “I try to stay animated so my family and friends wouldn’t feel sorry for me.”
Ruiz uses a variety of methods to keep looking her best, which, in turn, makes her feel more positive. “I just don’t feel beautiful without makeup. I put on my face, even when I have a moon face,” she says. She also enjoys shopping for new outfits, hairstyles, and wigs.
She encourages fellow sun lovers not to shun the outdoors. “We can’t be exposed to too much sun, but we have things that protect us, so we can still enjoy being outside,” Ruiz says.
If malar rashes or other lupus-related skin problems are affecting your body image, speak to your doctor. “First, your doctor will need to make sure you’re on adequate treatment,” says Victoria Werth, M.D., professor of dermatology at the University of Pennsylvania. “You have to make sure nothing is going on systemically.”
Makeup can go a long way toward covering up rashes and blemishes. Werth suggests products such as DermaBlend® or CoverMark® to cover the pigmentation. “At the University of Pennsylvania, we even have a clinic that helps our patients with makeup,” she says. Many hospitals across the country offer such a service. Werth suggests consulting with your doctor for referral to the one nearest you.
“If someone is really stressed out about some physical manifestation, there’s nothing wrong with going after something to make yourself feel better,” says Phillips. “There are cosmetologists who can help with makeup and stylists to advise you what to wear. I’m a strong believer in a healthy balance between tangible changes and working on your thinking. You want to do both.”
Other tips for keeping that balance include:
- Join a support group. “The Lupus Foundation of America is so valuable because they provide support groups. You don’t have to grieve alone,” Phillips says.
- See yourself through other eyes. On a sheet of paper, create two columns and list your negatives and positives next to each other. Can’t think of anything positive? Ask yourself what a well-intentioned, honest friend would say. The results can be eye-opening—and self-esteem-boosting.
- Reach out. If you can’t do a lot, do a little. If you can’t work, volunteer. “You need to be involved with other people. It’s harder to be miserable with others around you,” Minter says.
- Invest in a pet. “Having something that depends on you makes you feel necessary,” says Beasley, the proud owner of a dog named Wendi.
- Give back. “You can encourage other patients, share your story, or become an advocate, all from your computer at home,” Beasley says. “Thinking of others will help take the focus off your current situation and will boost your self-esteem while helping someone else’s.”
- Seek counseling, if necessary. You may need help adjusting to the changes lupus brings to your life.
And remember Beasley’s advice: Accept every invitation. When you’re focusing outward and grabbing new opportunities, it’s harder to beat up on yourself and mourn what you’ve missed.
The roller coaster of lupus in the high school years
Most eighth-graders count the days until they enter high school, and at age 14, Angela Maselli was no exception. A dancer since the age of 4, Maselli pictured high school as a swirl of social activity, dance competitions, studies, and dates. She couldn’t wait until it was her turn.
But by the time she entered high school in 2000, Maselli, now 25 and living in Atlanta, faced bigger challenges than finding a date for the prom. At the end of eighth grade, she started experiencing symptoms of what was eventually diagnosed as lupus.
She suddenly began to lose a lot of weight, causing her formerly healthy dancer’s body to plummet to 82 pounds. “I was 5 foot 3, and all bones and braces,” she recalls. “I did continue dancing, but all my costumes had to be altered.”
Not long after, Maselli started taking prednisone and Plaquenil to get her lupus symptoms under control. Her weight ballooned, and she started losing her hair. “I always had a fantasy of how my high school years would be, but now I felt I was just a kid with a disease.”
Despite the roller-coaster ride of emotions, Maselli decided she wouldn’t squander her high school years. “During my first two years, I just went to school, went to dance class, and slept, but right before I started my junior year, I realized my high school years were passing me by. I didn’t want to end up regretting all the things I could have done.”
Maselli started by building a support system of close friends who knew about her diagnosis, which she had kept secret. She started dating a trusted friend and even attended the prom with him. Dance also became a lifeline. It had always been her passion, and she was determined to keep up with her classes.
Maselli says finding a passion will help young people stay focused and happy while living with lupus. “When you’re young, you should try to discover what makes you happy and pursue it. Try things that interest you and embrace those things when times get hard.”
Finally, Maselli says developing a sense of humor is key to staying positive during trying times—and everyone has those in their high school years. “You have to find the humor in a situation,” she says. “Keep a positive mindset and learn to laugh at yourself when necessary. You’ll find that most things aren’t as serious as you thought. And if nothing fits that day, it’s always a good excuse to go shopping.”
Maselli believes the challenges she faced during her teen years helped her grow. “Looking back, dealing with lupus made me the person I am today,” she says. “I’d like all young people to know that, yeah, it’s hard while it’s happening, but living through hard times makes you a stronger person.”