Spotted Sunshine and Tanning Oil

Florida’s charm is undeniable, unless you have vitiligo. At eighteen, my love affair with the sun and the beach ended in a sudden realization. Basking in the sun and applying tanning oil became impossible for me.

How the Nightmare Began

I was eighteen when my first spot appeared. My memory does not record it as a gradual progression, even though it was. I remember one day looking at my right hand and seeing that four of my knuckles were white. White is no exaggeration. I had olive skin, like my father’s side of the family. They are all of Italian descent and have beautiful golden-brown skin. The stark white of the spots stood out against my otherwise tanned complexion.

Vitiligo was rare back then. Doctors knew little about it. They still do not, despite some understanding. Vitiligo has no cure. It stems from an autoimmune disorder linked to diabetes and insulin resistance. Discovering what this disease would mean for my future was a frightening experience.

During the summer, I did what I usually do. I enjoyed the South Florida beaches. One afternoon, I went to the beach and got a tan, just like everyone else. I coated myself with the Hawaiian tanning oil I’d brought, which was quite popular back then. It smelled of tropical coconut and sunshine. It gave me a savage golden tan that was the envy of sunbathers everywhere.

I lay face down for a while, then switched to my back to tan the front. Even tan was the name of the game. I was at the beach for about 30 minutes, then I got up, picked up my things, and walked home. I have sunbathed most of my life.

I had olive skin, as most of my family did, and when tanned, I’d look like a woman who spent all her time around the water and in the tropics. I did, so I guess it was fitting.

I got home and showered to wash the sand off my body. When I stepped out of the shower, I toweled off and looked into the mirror. That’s when I noticed something horrifying. My eyes were starting to puff up.

Answers

Within thirty minutes, my entire face had swelled up. My eyes were swollen shut to the point that I had only a sliver of sight left. I called my stepmother.

When she arrived, I told her I had taken an antihistamine after speaking with her. We waited about an hour to see if it would improve, but it actually got worse. My skin felt like it was boiling hot, and now there was sunburn-like pain all over my body. We decided to go to the emergency room.

Four hours or so later, the only things we walked out of the ER with were a diagnosis of sun poisoning and a stern warning from the doctor that I could have lost my vision. My burn had been that severe.

Consequences

That’s when the excruciating journey with vitiligo began. I don’t know if it brought it on, but before I realized it, my knuckles turned white. I was 20, in the prime of my youth, and life had taken a turn that would never be normal for me again.

I could no longer enjoy the beach. I burned every time, even with the highest SPF. Year after year, it progressed, achingly slowly. I could usually hide it, but after a while, it spread to parts of me where there was no hiding. Arms, legs, torso, and then my face were all affected. It does not go away. Vitiligo’s spread is so slow you don’t even notice a change unless you see a before photograph.

I would tell you it’s not so bad, but that would be a lie. It affected and still affects everything I do and who I am.

People would stare all the time. It was rude and cruel. Some asked if I had AIDS, in their ignorance of even that disease. The possibility of romance withered. Every choice I made was somehow touched by this disease.

What I wore, where I went, who I trusted, and so much more became victims of filtering everything through it.

I stopped being in photographs. For a very long time, I was hesitant to make acquaintances with people who didn’t know me. They would judge without knowing what they were looking at. In reality, they could see how it changed my appearance, but they could not see how I died a little bit more inside every day.

Years Gone By

It’s been decades. Decades. I have been in its clutches for decades, and it still continues.

Most of me is not a very British paleness, but there are just a few small areas where it is in the process of removing all my melanin.

When I was first diagnosed with vitiligo, it was so rare that I had never seen anyone else with the condition. It was just me, in a world obsessed with beauty.

Years into this long walk, I met an older woman in her 60s who worked the cosmetics counter at a department store where I bought my makeup. She noticed my skin and told me she had it too. She was completely depigmented. I asked how long she had suffered from it, and she said it began when she was 15.

I never saw her again, and it was decades later when I encountered someone else with this condition. Then came a TV show that groomed new models, and one of the models who participated had vitiligo. She was a beautiful woman. Her skin contrast was far more severe than mine, since she was a woman of darker coloring than I was. She seemed confident and as if it did not throw her off, but I suspect that was a front, a barrier she put up against the cruelty and ignorance of other people.

Reactions

I have had some people say it’s beautiful. That is probably out of kindness, because there is no way standing out like a sore thumb makes you feel beautiful. Beautiful was never in my descriptor packet. I excelled in many things, so I felt I had value in areas beyond looks. And I do. But that never changes the lash my soul takes every time I look in the mirror.

It’s not beautiful. It’s not. But not everything in life is or has to be. I know myself inside, and I feel beautiful as a person, if not as a decoration. I know those who truly love me and those who merely acknowledge my existence. In that respect, the best thing about vitiligo is that you know your friends love you for who you are. You know the man who met you and married you truly loved you for who you are. That gives a person a special appreciation for love.

I am a caring person. I love deeply and am as kind as I can be because I understand what it means to be different. I know what it feels like to be judged. I speak the same language as others in the same position, whatever the reason they are there. I am with them. I am them.

I have reached a point in life where I just don’t care what others think anymore. Like me, hate me, whatever they think of me has no bearing on who I actually am.

I have seen some of the most beautiful women in the world be completely grotesque because of who they are inside. I have also seen what society calls ugly and have gazed upon the shining beauty that radiates from them, to the point that you no longer see what is perceived as ugly. They are beauty, personified.

You don’t have to like it or find it beautiful. You don’t have to say it is. Some of us feel it isn’t.

A Little Kindness

What you should do, however, is consider that the person you notice has vitiligo has feelings that run deeper than the moment you will be there in front of them.

What you do or say, how you react or stare, will stay with us longer than the memory of us will stay with you.

Don’t be fake. Don’t compliment if it will feel insincere. Be kind and say nothing. Don’t stare; smile. Most of all, be kind. Kindness goes a long way for us, for everyone, really. But it matters even more for us. For every one kind word or act, we have endured countless unkind ones.

Be the person we will remember as kind and non-judgmental.

For My People

As for those who have just started with vitiligo and those who have been on this road a long time, know this: skin withers and ages, losing its youthful beauty. Inner beauty never ages, never loses its glow or appeal. It is always beautiful, highly prized and desired. You are always desired and loved. Don’t waste time with people who don’t.

(Published by Pen With Paper on Medium, July 2026)

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