Today’s post is going to be the first of my Interview Series called “Interview with a Vitiligo Patient.” I’m starting off this series with the most special vitiligo patient in my life, my little sister, and I’ll soon move on to interview others I know who suffer from the disorder.
Interviewer (Q): Siona (me). Interviewee (A): my little sister.
Q. What has been the most insensitive thing someone has said to you about your disorder?
A. At the beginning, people made a lot of jokes, like cow jokes.
Q. Cow jokes? Please explain.
A. They used to say, “Why do you look like a cow?”
Q. And how did you respond?
A. I just laughed because I knew they were joking and they didn’t actually mean it.
Q. What is a good way to deal with these questions?
A. Definitely spread awareness about vitiligo. Explain to people what the condition is and why it happens. And make sure they know your skin isn’t white because you bleached your skin [laughs].
Q. Besides verbal communication, are there any other ways to increase awareness of vitiligo?
A. Of course. There are tons of things online, like websites and blogs like yours. Encourage them to take the initiative to learn about it. Oh, yeah! There are also entertaining videos, like Things Not to Say to Someone With Vitiligo that can help people be more sensitive and understand the effect of their comments on vitiligo patients.
Q. Describe your trips to the clinic for treatment. Have you been enjoying your experience there? Have you made any friends with the hospital staff or other patients?
A. Well, the people at the clinic are really efficient. They always greet me kindly at the front desk and say “have a good weekend” on Fridays. Check-in is a breeze, since they know me as a regular. The nurses are also really friendly when they treat me, because they talk to me a lot.
Q. I’ve heard that you have a little tradition you do after every treatment. Tell us a little bit about that.
A. Oh, I get food after every appointment.
Q. What kind of food?
A. Panera Bread, McDonalds, sometimes Burger King, and Subway.
Q: So why do you buy food after your appointments?
A: I feel like I’ve already had a long enough day at school, and having to go to treatment afterwards just kills all my energy, so I need to have food!…….especially Subway [laughs].
Q. Have you ever met someone else with vitiligo?
A. Once, when I was sitting in the lobby of my treatment clinic, I saw a woman mouthing something at me. I was really confused. I thought she was talking to me because we’d possibly met somewhere before, but she didn’t look familiar at all. Then she came, sat down next to me, and told me about a product called Microskin that could be used to cover my white spots. It was great to meet someone else like me!
Q. What was the experience like for you, emotionally?
A. The woman, who I’d just met, showed me the vitiligo on her thigh and ears. Exposing your skin, especially in hidden places, is not something that someone would normally and voluntarily do. Showing me her spots was a very intimate moment between two vitiligo patients. I really appreciated that moment.
Q. That’s a great story! What was the feeling you carried out of that interaction? Did it change your perspective of your disorder?
A. There was a sense of reassurance that people know what I’m going through and they can relate to my feelings as a vitiligo patient. It helped me realize that I’m not alone in this.
Q. How do you feel about having vitiligo?
A. Well, I first used to be super self-conscious and, to an extent, I still am. But I’m not here to please everybody. I’m just here for me.
Q: Well said! Alright, we’ll wrap it up there. Thank you for being the first guest on the brand new Interview Series. It was great having you.
A: Thanks, Siona [laughs].