As someone who has a keen interest in language, I believe that terminology is important. How we talk about things influences how we think about them and how we think about them influences what we do about them. That's why I think that the terminology we use when we talk about vitiligo is important. If we aren't careful, it can lead to false assumptions about what vitiligo is and those assumptions can take us in unhelpful directions when it comes to what we choose to do about it.
This is why I persist in calling people with vitiligo “sufferers”, even though I realise I risk the disapproval of others who have decided to embrace their vitiligo by “celebrating their uniqueness”. Don't get me wrong: I respect that attitude totally. I appreciate the value of accepting those things beyond our power to change. I approve of positive mental attitude and I admire everyone who has a philosophical and constructive reaction to whatever hand life deals them. But the reason I never chose to “embrace” the loss of my skin pigment is because I never regarded it as being a normal or natural part of me. Unlike my rather short legs (which I choose to view – through rose-tinted glasses - merely as the result of having a longer than average body) I was not born with white patches on my skin. And unlike the loss of a limb or one of my senses, I never saw vitiligo as an accident or a disability with which I ought to have to come to terms. And, although there certainly were times when I doubted I would ever find an effective treatment in my lifetime, I never truly believed that vitiligo was, in fact, completely beyond my power to change. I see the condition as a sign of sub-optimal health rather than a badge of individuality.
I have always endeavoured to be a “glass half full” kind of person. Nonetheless, I definitely see vitiligo as losing pigment, not as gaining white patches. And my own view is that to seek to normalise it by using positive terminology can in fact be counterproductive because it can cause us to stop seeing it as something we can and should try to treat.
Is vitiligo a blessing or a curse?
Some people claim their vitiligo is a blessing because it makes them unique. I can appreciate what they mean. But, to my way of thinking, it is not the vitiligo that is the blessing in these cases. It is the admirable ability of the individual to find good in a bad situation that is the blessing. I myself feel that good things have come out of my having lived with vitiligo for so many years. It has made me so much more understanding of other people and their problems. It has, I hope, kept me humble. It has helped me to appreciate all the good things in my life and not take them for granted. And, above all, it has given me an empathy for other vitiligo sufferers and a desire to help them whenever possible. So I would say it has led to a number of valuable blessings, for which I am grateful. But I do not regard the condition itself as a blessing and I am more grateful than I can say to have made such a dramatic recovery from something that I always felt was much better described as a curse.
Is vitiligo a disease or a symptom?
Most doctors refer to vitiligo as a skin disease. But, again, I would disagree with this choice of terminology. In my opinion, it isn't a disease in the usual sense of the word. It certainly isn't a viral or bacterial infection. Sometimes it is referred to as a “skin disorder”. This is more accurate, since it is – let's face it - an abnormal condition that is acquired (we are not born with it). However, I think that a more meaningful label for vitiligo would simply be to call it a “symptom”. It is a visible sign that all is not well inside the body. Just as a cough or a rash are not diseases in themselves, neither - in my opinion - is the loss of pigment. All of these things are signals of some underlying issue - maybe a real disease, certainly a loss of full health. And to label it a disease (just like labelling it a blessing) can rob us of the incentive to rid ourselves of it. After all, a disease is something you "have". And, all too often it is something you keep. Once it is diagnosed, it is somehow official, written in stone and "embraced" in a medical context just as surely as it is embraced philosophically by those who call it a blessing.
If we are going to be really pedantic about terminology (oh, go on then, let's - I love a good bit of pedantry now and then!) I would have to say that the white patches that we refer to as vitiligo are the symptom, the process happening in the skin to cause the white patches is the disorder and whatever the underlying cause is is probably the real disease.
Is vitiligo your past or your future?
We never really know what is around the corner. It fascinates me to think that the day before I noticed my first new pigment starting to appear in my 50 year old vitiligo patches I had no clue that it was going to happen. Sure, I had been taking nutritional supplements for about 6 weeks at that point in the vague hope that they might help. But nothing else I tried ever had so I had no real expectations. One day vitiligo was my entire past (having started when I was an infant) and it would be, as far as I knew, my entire future. The next day the impossible had begun to happen and from that point on everything changed.
If, like I did for so long, you are assuming that your vitiligo will always be with you, you might want to reconsider how you talk about it and how you think about it. I'm not suggesting that you can "think it gone" by sheer willpower. If that were possible I'd have been cured decades ago. But I am suggesting that seeing it for what it is - a symptom of a deeper health issue - and thinking of it as your past, not a permanent feature of your future - you may feel empowered to take on this thing called "vitiligo" and be proactive about consigning it to your past.
My name is Caroline.