Two Women Living With Vitiligo Share How They Persevered To Overcome Challenges And Find Their Voices

Vitiligo is an autoimmune condition that appears as notably white patches of depigmented skin on the face and body. A visible condition, vitiligo can affect how you look and are perceived by others, and living with vitiligo can be a difficult journey with a profound impact. For those living with vitiligo, their diagnosis is a fundamental part of who they are.

To better understand what it’s like to live with vitiligo, we spoke with two women about how it has impacted their lives and how they manage the condition, persevere through challenges and use their experiences to advocate for themselves and others.

Below, they share their vitiligo journey — from the moment they first learned about their vitiligo, to the experiences that helped them grow their confidence and find their voices.

The Diagnosis That Changed Their Lives

While vitiligo can develop at any age, initial symptoms usually appear before the age of 30. For Kim, it appeared in her early twenties after getting a sunburn on vacation that didn’t seem to go away. Sam was diagnosed in the second grade after visiting the dermatologist due to depigmented patches of skin that first appeared on her body and, later, her face. Although both women were diagnosed at different points in their lives, both were left feeling overwhelmed and uncertain about what the future would bring.

Kim’s initial reaction was to go home and do her own online research, where she was immediately inundated with photos of extreme presentations of vitiligo that looked very different from her own: “I was looking at the one spot on my hand that was affected compared to people who were deeply depigmented in many parts of their bodies, and it was scary and difficult not to know how it would play out for me.”

Although she was only six years old at the time, Sam also remembers fearing the unknown: “It was tough to know that it wasn’t necessarily going to get better, and actually it was likely going to spread throughout my body — making it noticeable to the point where people would want to ask me questions about it.”

Persevering To Overcome Challenges

Both Sam and Kim experienced significant moments throughout their vitiligo journeys that shaped them into the women they are today.

When Sam was a teenager, her vitiligo spread across most of her body and face. She constantly felt different from other people because of her skin, which was compounded when she received difficult and sometimes cruel questions from other people about her condition.

“When I was younger, I at one point chose to not wear makeup at school and I remember a substitute asked me, ‘Are you sick?” Sam recalls. “It was embarrassing and uncomfortable that I had to address these types of questions in front of my classmates.”

Receiving these types of questions from her peers, teachers, and other adults in her life was difficult, and Sam felt overwhelmed at the aspect of trying to come up with an answer on the spot.

After receiving her diagnosis, Kim spent an hour every morning airbrushing her skin with makeup to cover up areas of depigmentation, even hiding her vitiligo from her then-boyfriend (now her husband). She struggled with her decision to cover her white patches with makeup — knowing that she had nothing to be ashamed of but yet still not wanting people to look at her differently.

It wasn’t until she became a mom that she reconsidered her choice to cover up her vitiligo. To make more time for her son, she decided to go just one day without makeup to see what the experience would be like.

While out on a walk, her neighbor noticed her natural skin and told Kim that her own mother had vitiligo and had always been too self-conscious to wear short sleeves or go out without covering her arms. She commended Kim for being confident in her own skin.

For Kim, this was a pivotal turning point:

I stopped wearing makeup for a day, and it opened up a conversation that I might not have had if I had still been covering up my skin. It made me think: what else am I missing out on by covering this, and what may lie ahead if I share more about it?

Learning How To Advocate For Yourself

Finding a dermatologist who can advocate for you and be a part of your journey is important for both Sam and Kim. Sam has worked with multiple dermatologists and explored a variety of treatment options throughout her vitiligo journey and encourages others to stay connected with their dermatologist as well.

“It’s important to stay connected with your dermatologist and make sure you’re taking care of your skin, because vitiligo can make your skin more sensitive to a lot of things,” Sam explains. “Additionally, you may not really know what options may be out there to address your specific skin needs unless you find a dermatologist that’s right for you.”

Kim reminds others to find a dermatologist who is willing to work with you. The first doctor Kim worked with told her there was essentially nothing she could do for her vitiligo, given there weren’t many treatment options available at the time. Through extensive research, Kim was able to see dermatologists who were able to evaluate her holistically and address her individual needs and concerns.

Looking Ahead

Living with vitiligo has taught Sam and Kim valuable life lessons. For Kim, the condition has inspired her to become an advocate for herself and other people living with the condition. When she was diagnosed, there weren’t many resources available about vitiligo, let alone other people who understood the condition.

Today Kim continues to advocate for herself and maintains a positive outlook on what the future holds: “For people with vitiligo, it’s important to know that the condition doesn’t define who you are or how you look. It’s exciting to see that now there’s a different outlook on vitiligo. Don’t give up hope, find a dermatologist who will dedicate time to listening to you, understanding your needs.”

For Sam, it made her hyper-aware of the fact that other people may be dealing with similar insecurities and managing similar feelings as she was.

“At first the comments, stares, and uncomfortable questions really bothered me,” said Sam. “Now I use these opportunities to educate others about this condition. I’ve learned that people aren’t ill-intentioned, they’re just not informed, and I hope to continue to have productive conversations that serve as a learning opportunity for others.”

Individuals were compensated for their participation.

Director of Photography: Joshua Echevarria; Makeup + Hair: Tomoyo Shionome; Wardrobe Stylist: Nina Attal; Production Designer: Sharon Vion; Set Dresser: Lana Boy; Producer/Director: Panita Chanrasmi-Lefebvre/BDG; Art Director & Photographer: Angela Poccia/BDG; Production Lead: Nancy Valev/BDG; Branded Content Lead: Irma Elezovic/BDG

© 2023, Incyte Corporation. MAT-DRM-00992 09/23