Why vitiligo is so confusing

Last Updated on 19th September 2023 by Caroline Haye

Part 1: mysteries and complexities

Assuming you landed on this page intentionally, you are probably looking for information about vitiligo. And, unless you are completely new to the topic, you will have discovered that any search containing the word vitiligo returns a lot of results. (Well in excess of 60 million at my last count.) That’s a lot of information. So it’s not surprising that some of it is helpful and some is not. Articles and websites on the subject range from scientific to social, factual to frivolous, informative to inaccurate. (Which is probably a pretty good description of the entire internet, now I come to think about it.)

This super abundance of information is remarkable, given the shocking lack of vitiligo awareness and resources that existed as recently as a decade ago. But, on the other hand, the sheer quantity (and variable quality) of information can be bewildering. In fact, it sometimes seems like one massive mess of opposing facts, theories, opinions, attitudes and recommendations. That’s why vitiligo is so confusing for anyone trying to research it in any depth. Sure, it’s easy enough to find a simple description and the most basic facts about it. But, once you start delving any deeper into the subject, it rapidly turns into a tangle of mysteries and complexities.

For a start…

Defining vitiligo is not straightforward

Everyone agrees that vitiligo is a patchy loss of skin colour. But that is about as far as total consensus goes. One definition you will keep coming across if you look at the medical literature is that it is “an acquired skin disorder of unknown aetiology.” In other words, it is something that people get (aren’t born with) and no one knows what causes it. That’s not very helpful. In fact, some experts today would actually disagree with that description on both counts. They would point out that there are some genetic and heredity factors involved, that very occasionally babies are born with it, and that research has now uncovered many of the processes involved in its development. But opinions vary on many of these finding too.

So, who is correct? For example, is vitiligo a genetic anomaly, a rare autoimmune disease, a common skin disorder, or just a symptom of other underlying conditions? I have heard it called all of these, and more. So which definition is right? Maybe all of them. The fact is that, despite everything science has discovered about vitiligo in recent years (which is impressive), there are still many puzzles to solve.

Not only is a definition of vitiligo not straightforward, but…

Vitiligo diagnosis can be difficult

Because of my blog site I receive a lot of messages and emails from people in search of vitiligo information and moral support. And a question I often ask them, before attempting to answer theirs, is whether or not they have had a definite medical diagnosis. The reason being that there are other dermatological conditions that look so similar that even specialists sometimes have difficulty telling them apart. Not only is there very little point in trying to tackle a problem if you aren’t 100 percent sure it’s the one you think it is. But the other conditions that are most commonly mistaken for vitiligo are actually easier to treat. So it’s really important to get a proper diagnosis at the outset.

But, once you have a correct diagnosis, knowing what to do next can be tricky…

Whether to treat vitiligo at all is a complex question

The question of whether or not to seek treatment for a given health problem is usually a simple one. For example, if you had diabetes or a heart condition you would be reckless not to do something about it. But vitiligo is a condition that divides opinion. Some people with vitiligo have no symptoms other than pigment loss. So they don’t even view it as a health issue. They see it (as do some doctors) as a purely cosmetic one. And some decide to embrace the unique patterns it creates on their skin.

Many more, I suspect, are like me. They have additional symptoms or conditions that are very likely linked (like other autoimmune disorders or digestive issues). So they see their white patches as a warning sign of underlying health problems. And there are many whose vitiligo, regardless of whether or not they have other symptoms, causes them psychological distress. So, for them, treatment is a priority.

Which brings us to the next puzzle…

Treating vitiligo is not an exact science

There are lots of treatments that can help to reverse vitiligo. But deciding which one to use involves a fair bit of trial and error. It’s not just a matter of asking your doctor for some pills or an ointment. There is still no universal cure for the condition (at least, not yet). And opinions vary as to which of the currently available therapies are best. This is partly because different remedies work better for some people than for others. In fact, there is no guarantee that, for some people, any will work at all. (And you never know which category you will fall into until you try.) Partly, it depends on individual preferences and priorities. For example, some people prefer using natural remedies, whereas others are happy to use prescription drugs, or even surgical procedures, if they think there is a chance of improvement.

In addition to these variables, there’s the question of how practical or affordable a given therapy might be. For example, laser treatment, skin grafting techniques and certain topical creams and ointments can be too expensive to use on extensive vitiligo. So you would need to decide what parts of your body were a priority and just treat those.

If you want to treat your whole body at once narrowband UVb phototherapy is a popular choice because of its relatively high success rate in reversing pigment loss to one degree or another. But, again, there are no guarantees and for those who have to pay for this therapy privately the cost of a sufficiently long, full-body course of treatment is high.

Most experts seem to agree that combination therapies (e.g. phototherapy together with certain skin sensitising drugs, herbs or other nutrients) produce the best results. But, again, which combination therapy will be the most effective is something that varies from one individual to another.

Hopefully, one of the therapies you try will start to deliver results. Which brings me to my next point…

Measuring the success of treatments can be confusing

Measuring the success of a given treatment can be exciting but it’s rarely plain sailing. If you undergo treatment in a clinical setting your practitioner will likely use various tools for measuring your progress. (Like taking medical photographs, using a Wood’s Lamp. And taking into account your feedback based on an established index designed to assess and score changes in your condition). But, if you are trying different therapies at home, monitoring your success is something that you will need to do yourself. And, unless you take plenty of photos on a regular basis, it is surprisingly difficult to gauge if, or by how much, any changes in your pigmentation occur.

Finally, there is the question of time frames. Most vitiligo therapies don’t produce visible results for at least several months. So, how soon do you stop one and try another? Even if you do see progress, how long do you continue? Particularly if the treatment you are using involves potential side effects. For those of us who achieve significant or total repigmentation, how do we know when to discontinue our treatment, if at all? And, since vitiligo tends to return after a period of time, how long do we wait before starting again?

Whether you opt for treatment or not, vitiligo is the kind of condition that can complicate your life on a daily basis…

Daily life with vitiligo can be complicated

Even those individuals who decide to celebrate their vitiligo instead of treating or hiding it encounter challenges in their daily life because of their condition. For some, the decision to embrace their visible difference is a choice that they make once. Others have to make it afresh each day. For them this decision gives them a sense of freedom to be who they are. But they still have to deal with the curiosity and thoughtless remarks of others. And they may still find themselves wrestling with issues of self-confidence as a result.

There are many others who feel more comfortable hiding their patches. They prefer not to have to answer questions about their skin. Their vitiligo causes them significant mental distress and they just want to cover it up so that other people can’t see it. And so that they themselves can try to forget about it too. (That is the category I was in.)

This strategy is neither right nor wrong, of course. It’s just a common way of dealing with the situation. But it does make life more complicated. Keeping your vitiligo under wraps (literally) impacts your choices of clothing, hair style, activities and social interactions. For example, instead of taking each day as it comes, it means you have to plan ahead, wear garments that hide your skin in all the right places, rather than the fashions you like, and avoid situations where you might feel embarrassed or attract unwanted attention.

So, you might well ask, is there anything about vitiligo that is not complicated…?

Is it possible to simplify vitiligo?

As I have tried to illustrate, vitiligo is anything but straightforward. For those who research it, and for those who live with it, it can seem fiendishly complicated. But, like any other phenomenon, the more you study it, the less complicated it eventually appears. Obviously, the more that scientists discover about this condition, the closer they get to a permanent cure. And the more we ourselves learn and observe, the better we become at dealing with it day to day.

You may have heard that the best way to eat an elephant (and I’m not suggesting you do) is one bite at a time. And the best way to understand any puzzle is to break it down into more manageable parts. In many ways vitiligo is a puzzle (hmmm, yes, more like a puzzle… so maybe forget the elephant). And looking calmly at one piece at a time makes it a lot simpler to tackle. So my advice, if you want to simplify vitiligo, is to learn as much about it as you can. It doesn’t matter how long it takes. And it doesn’t matter whether you understand everything you read or not. In fact, you will probably find that some of the most useful information comes from your own experience. You’d be surprised how much you can learn by just listening to what your body is trying to tell you.

Noticing how your vitiligo and general health respond to different factors and therapies, as well as learning some basics from reliable sources online, will make a big difference to your understanding of your condition. And, if my own experience is anything to go by, a little “book knowledge” and a lot of self knowledge may be all it takes to start making sense of the mystery and complexity of vitiligo… helping you to make sense of the puzzle and putting you back in control of your skin, and your life.

You just can’t stop picturing that elephant can you? 😉