Living In Fear With Vitiligo

Effects of Vitiligo

When someone gets a diagnosis, it is a very medical moment. The doctor tells you what the condition is called, (hopefully) explains what it might mean for your body, and what treatment options are for your future. This is the information you need in order to make decisions and keep things moving, but there are things they never tell you. You never know that you will be living in fear with Vitiligo. 

When it comes to Vitiligo questions and answers, doctors are pretty good about it. There isn’t a ton to say, so they make sure that you know that it’s a cosmetic disorder, it isn’t lethal, and to stock up on sunscreen. This is all well and good (and very important), but no one touches on the psychological impacts.

When one has Vitiligo – and speaking as someone who does – it takes an emotional toll. We all have fears and insecurities just like everyone else, but there is a true fear component that no one ever talks about. It is a very deep rooted, innate fear that probably never leaves you. I have had my diagnosis for over twenty years, and I can surely tell you that it hasn’t budged in me. 

Everyone lives with some fear of the unknown. Whether it is worrying that your job might be in jeopardy, wondering why your boyfriend hasn’t called or being scared that a meteor might hit your house – we don’t control most things. We live our lives to the best of our abilities and hope that those unknowns don’t kick us while we aren’t looking. 

With an autoimmune disorder, your body is the unknown. Your body makes decisions that don’t make medical sense, don’t run parallel with logic, and don’t give you signs before they happen. They just happen. 

Onset of Vitiligo

Vitiligo starts with a single spot, whether you notice it or not. It usually spreads – at a rate and volume at which your body decides on its own – and there is very little that you do can make it stop, if anything. What you do begin to decide, however, is all of the things that you do that could make it worse. Because in our minds, almost anything can.

Living in fear with Vitiligo and what you can do to poke the monster is a very real fear when your skin has decided to have a mind of its own. And when that mind of its own is a permanent change from each and every decision you make, it can get very scary.

If I pluck my eyebrows and irritate my skin, will my melanin rebel? What about electrolysis? What about a cut? Just because it didn’t happen this time, can I be sure that it won’t happen the next? 

We work hard in our lives to be stronger and forgive the mistakes we have made, but when you make one like this – which you know could have been prevented – it is hard not to spend a lot of time blaming yourself.

Then there is the sun. Most people with Vitiligo have a strong relationship with the sun, even if the relationship itself is very different. It is best for us to stay out of the sun due to fear of burning our unprotected skin patches, but there is more. 

Many of us feel that being exposed to the sun can worsen the patches themselves. Is this true? Probably not, but it feels that way – and sometimes it is difficult to separate a fear from what might be reality. No one can tell you 100% in any direction, so you believe what you believe.

Facts About Vitiligo

For many of us, tan skin enhances the spots that we have, as the contrast is greater. Depending on skin tone and level of melanin, it might not be as obvious. For someone with very dark skin, spots and the contrasting darker pigment may look very similar year round – except when it spreads. This means that they deal with the trauma of their disease and fear day in and out, every day.

For someone who is Caucasian, during a few of the winter months, your skin is more pale, making the spots blend in a bit more easily. For me, if you’re not looking at my pale hands, you might not notice the Vitiligo since the rest of me is covered up. When I begin to tan (around April), all of my spots are highlighted and I suddenly see everything that has spread while I was busy trying to avoid it during the winter and it is retraumatizing. 

We all share the same fears though, regardless of our skin tone. When you have Vitiligo, as much as you try to accept it or not, there is repeated trauma and fear in trying to help yourself not get worse. Every new spot or patch, every time you’ve seen the Vitiligo spread, you are retraumatized – at least a little bit – regardless of how far you are in your acceptance of the disease. 

If a skin change would happen and stay that way it might be easier, but this disease progresses and spreads. And our actions have the potential to increase the rapidity.

Fear of the Unknown

So we find ourselves living in fear with Vitiligo. It waxes and wanes all year, every year. Should I wear long sleeves all the time? Avoid all beaches? Start a treatment that could make it spread? Try no treatments and hope that it doesn’t get much worse?

Here is the thing – what we believe is our reality. And if we have fears, they are real to us. 

If you have Vitiligo, know that you are not alone. We all feel this way, regardless of what stage we are in with the acceptance of our disease. It is possible to be totally comfortable with yourself and then in a complete panic as you have to decide something that could impact your skin. 

If you don’t have Vitiligo, please try to be understanding. Just because this disease can’t kill us doesn’t mean that it doesn’t have a huge impact on our mental health. If you feel that your loved one is exhibiting unhealthy behaviors (never leaving the house, never allowing anyone or anything to touch their skin, etc.), strongly encourage them to seek professional help, but don’t get down on them. This fear is real. The consequences to our skin mistakes are often permanent and that makes some of our daily decisions much heavier than anyone could realize.