Hair care: How to do more with less

Lupus Foundation of America

Resource Content

When Mali Minter started losing her hair to lupus at age 25, she was surprised—and angry. The high school teacher from Dunmore, WV, was already dealing with other symptoms, all while preparing to get married.

“Then on top of everything, I started losing my hair,” Minter says. “At the time, I wasn’t even sad—just really angry.’”

Thinning hair is common among people living with lupus. So is the whirlwind of emotions that comes with hair loss. Whether the result of lupus or a side effect of medications, hair loss can be a big shock, particularly when hair does not grow back.

For Karen Patch, 44, a senior technical architect for a software firm in Durham, NC, losing her hair dramatically changed her perception of herself. “I had long blond hair, and I was always complimented on it,” she says. But by the time she was in her 20s, she was hiding her hair in a ponytail because that hairstyle made the loss less noticeable. The experience was overwhelming. “When you think of yourself as looking a certain way, it’s really hard.”

Fortunately, you can take steps to regain control of your style—and confidence.

Find Your Style

Find a stylist you trust, says Gail Lockwood, owner and master stylist at Urban Organic Hair Designs in Fort Worth, TX. “A good stylist can be just as important for your sense of well-being as a good doctor,” she says. “You want someone who understands what you’re going through and can help you maintain a look that still feels like you.”

Lockwood advises her clients living with lupus to keep their hair cut short to prevent breakage from extra weight. “A bob can go from classic to modern and edgy, and can fit many different looks,” Lockwood says.

Vickie Lacey, owner of Vanasons Salon in Atlanta, agrees. “Fine hair is my specialty—the thinner the better,” she says. She recommends shaped cuts with light layers to give the illusion of thickness.

Treat Your Locks Well

The right products can affect the health and strength of vulnerable hair and even help preserve it, Lacey says. Her salon uses Aveda products, which she notes are all-natural and well-suited for people with sensitive scalps and brittle hair.

Lockwood recommends hair-loss treatment systems such as Nioxin, an organic hair care product that uses tea tree and peppermint oils to help prevent further loss. “If you’re taking medications like cortisone, your hair is already dealing with a lot of chemicals,” she says. “A nonmedicinal shampoo will protect hair, cleanse the scalp of medication buildup in the follicles, and stimulate new growth.”

If your hair was naturally thick, coarse, curly, or dry, it needs plenty of moisture, Lockwood says. If your hair is fine and light, look for something that can gently boost volume or color. “The darker the hair, the more full it looks,” she says. Lockwood advises avoiding any products with ammonia, particularly straightening products, which can dry and damage hair.

Covering Up

Women with more substantial hair loss have options, too. Patch, who has discoid lupus scarring, often wears wigs. Shopping for wigs in person for the first time was tough, though. “I went to the store and didn’t know what I wanted,” she says. “The clerks were trying to help, but it was just really hard.”

Online options, such as, let her experiment at home. “There’s a type of wig called a monofilament, which is synthetic but looks like real hair and scalp,” she says. “Human hair wigs tend to be more brittle and didn’t work for me.” She notes that now she can change her style often—and even gets compliments on her cut.

Minter prefers clip-in hairpieces that blend with her natural locks. Her favorite came from an unexpected place. “My dad and I went to the Minnesota State Fair,” she says, “and someone was in the grandstand selling hairpieces. My dad said, ‘You should look at these.’” Though skeptical, she agreed to try it. “I clipped it on the top of my head, and it turns out my dad was right!” She wore her “fair hair” to her wedding two months later. “It’s the best piece I ever wore.”

Lockwood and Lacey note that there are new extensions that won’t break even the most fragile hair. “Stay away from extensions or pieces that use glue or tape, including ‘fusion,’” says Lockwood. “Try ‘micro links,’ which braid individual strands of extensions to hair.” Lacey suggests Simplicity extensions, which are lightweight and single-strand.

For some people, hairpieces are too itchy, time-consuming, or expensive. Heather Farrell, 40, developed lupus-related discoid alopecia 11 years ago, while also experiencing chemotherapy-related hair loss. “My hair fell out in huge circles around my head,” says the San Francisco-based interpreter. “The first time was the hardest because I really wasn’t expecting it. I looked moth-chewed.” Wigs weren’t working for her, so she finally shaved her head. “I would wear hats or a bandanna when I went out, or scarves. It just felt easier that way.”

One rushed morning, however, Farrell left home without a cover-up. “It was awful. I got to work and realized I didn’t have anything on my head, and I didn’t know what to do. I was extremely self-conscious. I didn’t want to get out of the car.”

Out of that most difficult day came a moment of clarity. “I realized I wasn’t uncomfortable for myself, but because others were looking at me,” Farrell says. “And I finally thought, I have enough of my own problems to deal with. I don’t have the energy to worry about others.” There are still hard days, of course, but now Farrell puts her energy into educating others about lupus.

Patch says a support group helped get her through the worst. “It helped me come to terms with the fact that, because of scarring, my hair is not going to come back.” Humor, friends, and family support really helped, she says. “Sometimes you feel like, well, it’s just hair. With everything else that’s going on, why am I so upset? But it’s a big deal, and it really helps to talk to someone who knows what it’s like.”

The group also helped her get over her fear of others’ judgment. “For me, it was about not hiding my hair loss. I want to make people aware, and I don’t want to be afraid to show who I am.”