Getting The Vitiligo Diagnosis

When To See Your Doctor

When you see a white patch on your skin, you may start wondering if you have Vitiligo. There are many questions and answers about living with Vitiligo, so it is important to see a health professional to get a correct diagnosis – but the mind does wonder. Here is the beginning of my Vitiligo story. 

I was 20 years old and away at college when I found my first white spot. I am Caucasian with a deep tan in the sunnier months just from walking from my house to the car. I used sun screen and did the things that I was told I was supposed to do for my skin – most of the time, anyway (let’s be honest!).

I had just gotten out of the shower and was drying off when my eyes passed by the mirror casually. Doing a double take, I noticed that I had a strange white spot on my left breast. It had uneven edges and I’d absolutely never seen it before. Not knowing anything about anything, I called my parents. 

I told them what I saw and thought that maybe something was wrong with my breast. They thought I should go see a dermatologist first (because life experience helps to tell you what is more likely) and I made an appointment.

My father flew in to go to the appointment with me, so I was definitely comforted, but absolutely terrified. I had seen a book when I was younger, casually opened to this page where a person had spots all over their body. It must’ve been at a dermatologist’s office, and likely during one of my mother’s doctor’s appointments when I was a child (she does not have Vitiligo), but I don’t remember much more about those details. What I do remember is that photo.

It was scary. I didn’t know what was happening or what would happen in the future. Was I going to look like the person in the book from all those years ago? Was seeing it some kind of premonition for later in life? What did that person have? What did they look like now? Did they know they were in a book? Man, I wished I could’ve asked them some questions…

 My father and I met the doctor, who neither of us knew and would only end up meeting this one time. I remember him being a very nice and respectful practitioner who asked me to undress from the waist up and cover myself with a gown. 

When he entered the room, he took out what I believe was a black light flashlight and asked me to place my right hand over my left breast for modesty reasons. Being a dermatologist instead of a gynecologist, I’ve never forgotten how considerate I thought this was. 

Shining the light onto the area where my breast and hand were, he asked me to confirm that he was looking at the right spot. I said, yes, it was what he was seeing. And until the day I die, I will never forget what he said next. “Just like the one on your finger.” 

It turns out, there was another spot on my right hand. The hand that was covering my breast and the one that was also under the black light. It was on my ring finger, on the bottom section. I had never seen it until that second and it was the first moment where I understood that – whatever these spots were – would spread elsewhere. 

I don’t remember the next moments clearly because I was a little shell-shocked. He told me and my father that I had Vitiligo. It was a cosmetic disease and there were no real recommended treatments available. Some people took massive doses of vitamins, some tried light therapy, some bleached their skin instead of waiting for the progression of the disease. There weren’t consistent results, and in many cases, no results whatsoever. 

It has been over 20 years since that appointment. I am older and – I like to think – a little wiser than I was back then. One of the major things that I’ve come to learn is that what you look like is not the be-all and end-all. Magazines and television and your peer group at school may have told you differently, but they really are wrong.

You can love people with spotty skin and people will still love you. You can be a professional and a parent, a partner and an athlete. The Vitiligo diagnosis does not change who you are or what you can become. 

Am I the same person that I was the day before I found my first spot? No, I’m not. For better and worse, I am not. I have been far more insecure than I ever thought possible. I have been far stronger than I ever thought possible. I learned that people care a lot less about what you look like than you think they do. They are too busy thinking about their own insecurities, they really don’t have room in their heads for yours. 

Life with Vitiligo moves you into a place of the unknown because you have no control over it. It will do what it does and you are along for the (hopefully) very long ride. But it doesn’t have to control you. 

If you are comfortable, I’d love to hear your diagnosis story. When did you see your first spot and what did you do from there? If you don’t have Vitiligo, feel free to share your diagnosis story of another kind. None of us are alone in our insecurities. It is just tough to remember that sometimes. 

*I am not a doctor and am not offering medical advice. If you have medical concerns, please consult your doctor.