Living With Vitiligo

Vitiligo Stories

Living with Vitiligo is a challenge. Not the kind of challenge that you experience while climbing a mountain or swimming across a lake. With those types of challenges, you get to the other side. When you are living with Vitiligo, there really is no other side. 

Unless you have taken a journey with this disease, you might have a lot of questions about Vitiligo. So allow me to give you some answers. 

What is Vitiligo? 

For a physical disorder that affects approximately 1 in 100 people, it is surprising sometimes that many people haven’t heard of it. 

According to Mayo Clinic, “Vitiligo is a disease that causes the loss of skin color in blotches.” This is true, and a bit of a clinical definition, but there is a little more to the story. 

Vitilgo is a disease where you lose pigment in skin that formerly had pigment. It can appear in anyone of any background, race or gender. It is believed to be an autoimmune disorder, which means that the body attacks its own healthy cells. While one may be born with a healthy body and healthy skin, at some point, the body decides that the melanin that colors your skin is harmful. The body attempts to “help” in the only way it knows how. It kills off what it sees as the problem. 

While this strategy is excellent for keeping us alive and kicking (imagine your body not fighting the common cold, flu or pneumonia), it contributes to some major life issues when it comes to autoimmune patients. 

Does Vitiligo Hurt? Is Vitiligo Itchy?

No, Vitiligo does not hurt and it is not itchy. In fact, you can’t even feel it. If I closed my eyes and someone traced the spots on my hands, feet, elbows or elsewhere, I would not be able to tell that sensation from the sensation of tracing a circle on my skin that does contain melanin. There is no difference in sensation at all, only appearance. 

Does Vitiligo Cover The Whole Body?

The answer to this question embodies the issues that many people have when dealing with Vitiligo. It can end up covering the entire body, but for most people, it lives somewhere in between. 

Most people figure out that they have an issue when they find one or two spots. After consulting a doctor, you obtain the diagnosis and basically just go back home. Treatments for Vitiligo are limited and do not work for everyone. 

This leaves you living with Vitiligo. Spots appear or spread and there is very little you can do about it – other than watch while your body changes before your eyes. It can be a slow or quick progression, which can be different from person to person and year to year. 

Is Vitiligo Life Threatening?

This is a question that I am asked often when people find out that I have Vitiligo. No, in and of itself, Vitiligo is not a life threatening disease. It is often described as a “cosmetic disease” because medically, it only affects your appearance.

Vitiligo itself is a disease that affects your skin pigment. It is not a cancer or any other type of disease that is related to mortality or survival rate. 

Does Vitiligo Affect You In Other Ways?

Just because it isn’t life threatening in the way of suggesting that the disease can end one’s life, Vitiligo is an extremely distressing socially related disease. It is isolating, psychologically painful, and something that many people diagnosed with the disease do not want to speak about. I know that because I have always been one of them. 

Living with Vitiligo affects your self image, your self worth, and your general confidence in huge ways. I will be talking about this more in the coming weeks, but before getting into it further, I wanted to make sure to answer some questions. Please feel free to ask anything else if you have further questions.

Because this is a sensitive topic for me and so many people living with this disease, I wanted to create a safe space in which to talk about it. If you have a friend, family member, child or loved one who suffers from this disease, please feel free to comment. In my experience, the best healing from this disease comes from learning that you are not alone. 

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