2 conclusions and 4 tips for UV exposure
Many of us are finally emerging from what has seemed like endless chilly winter months and are looking forward to the light and warmth of summer. As the years since my re-pigmentation pass (and, it has to be said, as I get older) I find I crave sunlight more and more. So springtime finds me in a state of eager anticipation, keen to dust off our cobwebby sun loungers and get out into those healing rays after such a long time swaddled in woollies and fleeces.
The years I used to spend dreading hot and sunny weather seem to belong to another life now, although the memory of those feelings is still very clear in my mind. The prospect of having to cover up my vitiligo patches with clothing or cosmetics to avoid social embarrassment, when everyone around me was baring their flesh with carefree abandon, used to plunge me into a state of gloom, bordering on bitterness and self-pity, unattractive emotions that I used to mask just as carefully as I camouflaged my white patches. The whole rigmarole of hiding my vitiligo during the summer, and hiding my feelings about it, was troublesome and sometimes quite exhausting. I simply never came to terms with the condition sufficiently to go anywhere without my make-up or sunless tan on or my flesh expertly covered in well-chosen clothing. This often left me feeling tense and on edge throughout the very season when I should have been relaxing and enjoying outdoor fun with family and friends.
Nowadays, the only time I revisit those emotions is when I hear from others who are going through the same situation as I did back then. One of the most frequently asked questions I receive each spring and summer relates to the pros and cons of sun exposure: whether or not it should be avoided, whether sun protection should be used and, if so, what kind, etc.
So, in this blog, I would like to pass on some of my own experiences and impressions around this issue, in case you are wrestling with it yourself at the moment. The following comments are based on my own observations, as opposed to any formal, scientific evidence. But I hope you find them useful anyway.
Despite my first small patches of vitiligo developing when I was just a toddler, family photos show that I did otherwise develop a light, even tan whenever I spent time outdoors. By the time I reached my teens I had come to realise that what had become, by then, my annual sunbathing ritual in pursuit of a fashionable tan was leaving me with several new vitiligo lesions each summer. My perception of this (and I still believe this to be true) was that my sunbathing was not the cause of my pigment loss but that it simply revealed a process that had been occurring throughout the rest of the year.
I could see that the condition was spreading and it began to feel like a race against the inevitable to see how many more years I could enjoy developing a natural tan (with the aid, by then, of some camouflage here and there). I sensed that, sooner or later, I would have to start avoiding the sun altogether so as to make the contrast between my vitiligo and my normal skin less obvious. Eventually, the effort involved in trying to tan at the same time as hiding my white splotches became too much, added to which the de-pigmented skin was very prone to sunburn. I used to find I could only stay out in strong sunshine for about a minute before it started to burn. I used to feel myself frazzling, almost as if my skin was in contact with a red-hot poker. So I started to avoid sun exposure as much as possible, which I found quite depressing.
I now know that avoiding the sun is not only bad for morale but it further lowers vitamin D levels, which are typically lower than normal in vitiligo sufferers to start with. And even if you use sun protection creams you increase the risk of chemically aggravating your vitiligo. So, if sunbathing makes vitiligo patches burn and increases the contrast between them and the surrounding skin and SPFs are best avoided, what is a person supposed to do?
2 conclusions about sunshine and vitiligo
Well, my own experiences over the last 8 years and all of the information that I have absorbed on the subject have led me to the following conclusion: that UV light (whether sunlight or artificial UV) helps to reverse vitiligo but generally only in the following circumstances …
I was one of those cases for whom phototherapy alone was completely unsuccessful. I had tried PUVA as a young woman but it had no effect whatsoever on my vitiligo, except to make it sore. It turned pink, then pure white again.
I have come to believe that this is what happens when you try to “force“ the tanning process to occur (in this case by simply using a photosensitising agent plus UV light) without giving the body sufficient nutrients for the pigmentation to take place.
It was not until I had started to provide my body with supplemental tanning-related nutrients (in the form of Boost) and strong antioxidant protection (plus a variety of additional nutritional support in the form of Five a Day green formula) that UV exposure began to re-pigment my vitiligo patches instead of burning them. This experience confirmed my suspicions that the digestive problems I had always had since early childhood, must have left me depleted in these nutrients and that this was the reason for my vitiligo (as well as for the Chronic Fatigue that had plagued me since early adulthood).
Once I had been taking supplements for a week or so I noticed I was able to stay outside for significantly longer without burning. As a result of doing this on a regular basis for several weeks, my pigment started to return and this process continued until virtually all of my natural colour had returned. When I then switched to narrowband UVB therapy through the winter months I found this protocol a dramatically different experience from my previous ill-fated experiment with PUVA. The UVB perpetuated the rapid re-pigmentation that had started during the summer and actually seemed to accelerate it.
My feeling is that, as long as you are providing correct nutritional support to your body, it does not make a huge difference whether you use natural sunshine or whether you opt for phototherapy instead. Phototherapy has the advantage of being available year round and of being easier to administer with scientific precision. But sunshine is free of charge and a much more pleasant relaxing experience :)
My top 4 tips on UV exposure
Since people often contact me and ask for my views on the use of sun protection products, here four of my top tips:
I hope my observations on this topic have been helpful in some way. It’s fair to say that my relationship with sunshine has changed dramatically over the years. As a child I loved it. As a teenager I struggled to hang on to that love. For much of my adult life I feared and avoided it. Now I see it as a source of warmth, relaxation, enjoyment and – above all – healing. I really hope that if there is anyone reading this and finding themselves in a dark place this summer (either literally or emotionally) you might start to view sunny weather positively once more. Instead of dreading it, maybe you will decide to welcome it and use it as a vital part of your journey back to health. I do hope so.
My name is Caroline.