For Tonja Johnson, 53, the emotional toll of living with vitiligo was once so intense and distressing that she would scrape into her skin with her fingers, a nail file, or whatever she had on hand, in an attempt to remove the depigmented patches on her body. “I hated to go out in public without being covered with clothing and makeup because of the stares, whispers, and pointing,” Johnson tells SELF. “I remember paying for items at my local gas station and the cashier dropping my change on the counter as if I were contagious.”
Johnson, who experienced severe depression related to her condition, is far from alone in her experience. The stigma tied to vitiligo—an autoimmune condition in which the skin loses its pigment, often in spots and patches—goes beyond physical symptoms. Individuals with vitiligo also frequently experience mental health effects like low mood, self-esteem issues, social anxiety, withdrawal, and embarrassment—all of which can deeply affect a person’s quality of life.1
“People often have concerns that transcend the medical nature of this condition,” Evan Rieder, MD, dual-board certified dermatologist and psychiatrist at Weiser Skin in New York City, tells SELF. “Because of this, vitiligo is as much of a psychological condition as it is a [physical] medical condition.”
He points out one conspicuous reason for that: It’s often very visible. Some people lose pigment in just one or a few spots, but for others, the condition is widespread and affects multiple areas of the body. In rare cases, people lose pigment in the majority of their skin. And, unfortunately, we live in a society where people quickly judge others based on appearances.
“People [with vitiligo] have something that’s not [often] seen and accepted in society and they’re depressed by it, they’re devastated, they’re emotional, they’re anxious,” Nada Elbuluk, MD, director of the Skin of Color and Pigmentary Disorders program at the University of Southern California’s Keck School of Medicine, tells SELF. “[These feelings are] a natural human reaction when people have diseases that are visible to the world.”
People with vitiligo often experience intense judgment, which can lead to anxiety, stress, and shame.
Riya Agrawal, 24, felt comfortable in her skin as a kid thanks to a supportive network of friends and family. Both of her parents also have vitiligo, so she generally didn’t pay much attention to what other people thought of her. She was, unfortunately, introduced to the harsh realities of society during her teenage years, when people started to stare and make comments about her skin. She quickly realized others didn’t consider her “normal,” she tells SELF. This affected her confidence and led her to question where she fit in with other people her age.
McKyla Crowder, 29, was diagnosed with vitiligo at age five and also started to feel the emotional burden tied to the condition as a teenager. Having vitiligo, and watching her skin change before her eyes, made these years extra challenging for her.
“I definitely felt a lot of stress and anxiety when I was younger because I had a lot of bullies in school that liked to ostracize me and put me down for having vitiligo,” Crowder tells SELF. She recalls an incident where a group of cheerleaders chased her out of a high school basketball game “because just me being in the bleachers bothered them.”