Is vitiligo trying to tell you something?

Last Updated on 20th May 2023 by Caroline Haye

Your doctor can’t listen to your body 24/7. But you can.

It takes many decades (a whole lifetime even) to become thoroughly familiar with the peculiar workings of one’s own body. After all, we are not born with an owner’s manual to help us unravel the mysteries of the complex piece of living machinery we inhabit. And, unless we choose a career in medicine, most of us don’t have much idea what to do when it goes wrong. However, it is a fact that we all know things about ourselves that no one else knows. No other person has the same experience as we do ourselves of what makes us tick. And, if we learn to pay attention to the signals our body sends us, our common sense and instincts can provide vital clues on how to stay healthy. It’s all about being self-aware, taking note of how our body reacts and listening to what it is telling us. So let me ask you this… Is vitiligo trying to tell you something? Mine certainly was.

I belong to a generation that grew up with the mantra “doctor knows best”. But, now that I am older and wiser, I recognise this view was a tad naive… Not to mention unfair on doctors. They are only human after all and can only be expected to know a finite amount. Despite their extensive education, there are some things our doctors cannot know about us, unless they are psychic. (Or move in with us and follow us around all day, every day… And, even then, they would not have quite the same insights as we do ourselves.)

Each of us has first-hand insights into our health that no one else has

A doctor can listen to our heart and lungs, of course. But we alone are able to listen to our whole body… All the time… From the inside. So, if we listen to it intelligently, there is a lot we can learn about how it works. And there is a lot we can do to take responsibility for our own health and well-being, vitiligo included.

In my case, I’ve lived with this body and its many idiosyncrasies for over six decades now. And, largely as a result of seeing vitiligo (and several other chronic issues) come and go, I’ve developed a pretty reliable working knowledge of it. I now accept that it is primarily my responsibility to look after my health. And I do this, on a day-to-day basis, using my common sense and intuition. This approach also helps me to provide my doctor with helpful context on the odd occasion I do seek medical help. After all, doctors rely heavily on the information their patients give them.

Vitiligo is a message, telling us that something is not right

Research has shown that vitiligo is complex and a variety of factors can trigger it. And, because it involves damage to melanocytes throughout the body, not just in the skin, it has health implications beyond the loss of skin colour. This explains why one person’s experience of it may differ from the next. Some people enjoy good health, aside from their lost pigment. But many others (myself included) experience additional long-term conditions and symptoms that may or may not be connected to their vitiligo. And this is where the medical profession (for the reasons I mentioned) struggles to join the dots.

Too many vitiligo patients are told that their condition is harmless and incurable. The lucky ones may be offered a course of phototherapy or steroid cream to try to stimulate some re-pigmentation. Some may even get the chance to try the newly approved drug Opzelura. But, as good as they are, all these treatments are only ways of treating the symptom, not the root cause, of vitiligo.

So, in most cases, the only way to dig deeper into what our vitiligo may be trying to tell us about our wider health is to do it ourselves. After all, no one else is as motivated to get to the bottom of these mysteries as we are ourselves. Not that I am recommending anyone embark on a hypochondria-fuelled rampage through the internet in a half-baked attempt at self-diagnosis. But I am saying that you can learn a lot by taking an inventory of your general health and looking at possible links between your symptoms, conditions, lifestyle and circumstances… In other words, taking the kind of holistic overview that your doctor isn’t in a position to do.

Joining the dots

In my case, my white patches were just one of numerous persistent conditions that developed over the years, which included the following…

• Skin that was often itchy and highly reactive
• Sensitive mucous membrane (i.e. irritation to the lining of my nose and throat)
• Chronic fatigue (diagnosed as ME because my doctor did not know what else to call it)
• Lifelong digestive problems (diagnosed as IBS for want of another label)
• Joint problems (arthritis and bone spurs)
• Cartilage and tendon pain (diagnosed as undifferentiated connective tissue disease)
• Allergies (especially to mould)
• Significant gluten intolerance (despite a negative test for coeliac disease)

These frustrating health issues may sound familiar to many readers. (I talk to a lot of vitiligo sufferers with a similar medical history to mine.) They are frustrating because, like vitiligo, they defy the medical establishment’s ability to pinpoint their root cause and cure them. And they are all the more frustrating because they seem, on paper, to be random and unrelated. Yet they feel as if they are all part of the same underlying problem… Even to the extent that, when one gets worse, they all do and when one improves, they again follow suit. Realising this enabled me to start joining the dots. And I eventually understood that all of these health issues can develop over time from a faulty digestive system.

I don’t claim to have all the answers to my vitiligo and other chronic symptoms. I know there are probably genetic factors at play too. But what I do know is that nutritional supplementation enabled me to reverse my pigment loss. And I know that all my other ailments also improved when I did this. Later, I also discovered that cutting gluten from my diet, reducing my sugar intake and taking probiotics all helped with every other issue too. So, whilst I can’t claim to have found the root cause of my problems, I have been able to narrow down the main triggers to my gut.

So, how can you listen to what your vitiligo may be telling you?

Your situation may be completely different from mine. And you may or may not have other long-term symptoms and conditions in addition to vitiligo. But, if you do, I suggest you start by making a list of them all. Put approximate start dates next to each one, so that you have an overview of the chronology. This can help identify whether one event may have triggered the next. And be sure to include any historical conditions too because, if you have recovered from something, you might be able to figure out what cured it. For example, did you change some aspect of your diet, lifestyle or medication at that time?

I also recommend you make a note of anything your experience and intuition are telling you about how your skin (and the rest of your body) reacts to different factors and events. Remember, you instinctively know more about this subject than anyone.

Once you have your list and accompanying notes, you can start doing some detective work. Start by using reputable, authority websites to see what possible links may exist between your symptoms and conditions. Read any available research on whether environmental, dietary or lifestyle factors might be involved. Then you can begin to make some experimental adjustments in your daily life, based on your new knowledge, to see if they have a positive impact.

There are no guarantees that doing this will give you all the answers you are looking for. But you will definitely learn a lot along the way. And I would be surprised if something you discover didn’t significantly help improve your health on some level. At the very least, should you need to see your doctor again, you will go armed with a clearer and more comprehensive picture of your medical history and current state of health.

To sum up my message…

There are limits to what your doctor can do for your vitiligo and potentially related symptoms. Doctors can’t know everything about you. They aren’t mind-readers. They don’t know what you haven’t told them. And they cannot be expected to have total recall when it comes to your entire medical history. What’s more, they very rarely have the time or training to take a holistic approach. So the person best placed to attempt this is you.

In an ideal world, anyone with complex, chronic health issues (and vitiligo is certainly an example) would work one-to-one with an experienced holistic practitioner to figure out what their triggers are and how to manage their condition(s) as naturally as possible. But this kind of help is expensive, not to mention hard to find. So I hope that this post will help at least one person to find answers by asking themself the right questions.

Personally, I went through this process in reverse. I found some answers before I even knew what questions to ask. I was lucky enough to stumble upon a particular nutritional programme that triggered my re-pigmentation and improved my health in every respect. Without that accidental discovery, I would never have thought of joining the dots between my poor digestion, nutritional status and all those other chronic issues that I had always assumed were unrelated. And I would never have traced everything back to a common denominator.

If you, on the other hand, are starting from scratch, with a complete history of your pigment loss and any other symptoms or conditions, the process of discovering what your body is trying to whisper in your ear may lead you to similar conclusions as me. Or it may lead you to totally different ones. Either way, I promise you that you will know a lot more about vitiligo and about yourself at the end of it than you knew at the start. And, who knows? It may even change your life.