Last Updated on 27th May 2022 by Caroline Haye
2 points of view
One member of a vitiligo group I belong to recently raised the question of whether “suffer” is an appropriate word to use in relation to vitiligo. This is one of those questions that seems to split opinion within the vitiligo community. (The “vitiligo sufferer dilemma”, if you want to give it a name.) She felt passionately that referring to a person as a vitiligo sufferer is negative and counterproductive. She made the valid point that, for people who already feel different from everyone else, this kind of language does nothing to help the situation. I completely understand this viewpoint. But I can appreciate the opposing view too. Which is why I still often refer to people with vitiligo as sufferers. (Although I do now try to avoid using the term as often as I once did).
“Suffering” in silence
Increased awareness of vitiligo in the media during the past decade or so has been – and will continue to be – an extremely welcome development. It was sorely needed. Until various vitiligo ambassadors, celebrities and pressure groups started spreading educational and positive messages via the internet, patients and their doctors were just about the only people on the planet who had ever come across the word vitiligo. A negligible amount of research was going on into the condition. Most people who had it (including celebrities) concealed the fact and certainly didn’t talk about it. And doctors rarely bothered to explore treatment options. So it really was a case of “suffering” in silence.
Vitiligo has come out of the closet
Now, both the virtual and physical worlds at large have become aware that there is a condition called vitiligo that causes pale patches to appear on the skin. More and more images, videos, news stories, campaigns and social media posts spring up daily. And, finally, people with vitiligo are finding a voice and being noticed. You could say that vitiligo is coming out of the closet. Along with this, a feeling of solidarity and mutual support has developed and there are now numerous websites, groups, forums and organisations that can provide help and a platform for anyone affected by the condition anywhere in the world.
What unites us all is the fact that we have experienced a loss of skin colour, to one extent or another. So there are a lot of emotions and situations related to this fact that we share in common. But, of course, in every other respect we are all unique.
We all have different viewpoints on vitiligo
So, for all that binds us together in mutual respect and empathy, we are still going to have differing perspectives on things. (Vive la différence, I say! If we all thought the same, the world would be a dull place. But this is where the vitiligo sufferer dilemma comes in. )
Some people decide to cover up their white patches and get on with life, whereas some choose to show them off and educate the people who comment on them. Others “own their vitiligo” to the extent that they make a feature of it. There are those of us who actively try to get rid of our spots and there are others who don’t worry about them. A few even claim that they would not want to be rid of their vitiligo even if they could: it is what makes them special. All of these attitudes are fine and, as long as a person is happy with their viewpoint, they are all examples of positive thinking.
Different perspectives
The only dilemma, given these differing viewpoints, is how to talk about vitiligo without offending those who have a different perspective to your own. Personally, I think the answer is for all of us to accept that there are various positive ways of looking at vitiligo and none of them is wrong. These different perspectives fall broadly into two points of view:
- Vitiligo is not harmful and is just a cosmetic issue. It is beautiful and unique. We should be proud of our patches.
- Vitiligo is a skin disorder (in the same way as psoriasis and eczema). It is a symptom of underlying issues (whether genetic, autoimmune, hormonal, digestive, or whatever). It can be psychologically harmful. We should try to treat it and make it better.
I have to admit to holding more to the second view than the first. And the very fact I find myself apologising for this illustrates my point. The issue of whether or not we see pigment loss as a “disease” has become a bit of a hot potato. Some people like to compare their multi-tone skin to the beautiful pigmentation patterns we admire in the animal kingdom. But the big difference, in my opinion, is that animals have these patterns and colours by design, whereas vitiligo is the result of damage to our melanocytes: a physiological disorder. However, I absolutely think that vitiligo can be beautiful and that seeing it as such can be liberating and uplifting.
A solution to the vitiligo sufferer dilemma
Obviously, which camp you belong to depends on a variety of things. For example your personality, outlook, past experiences and general health will all influence your perspective. These differing viewpoints do not usually cause any conflict. People with vitiligo (note I resisted using the S word!) are known for their empathy and compassion, not their aggression. But, occasionally, feelings run high on one side of the debate or the other and can lead to a little bit of friction.
In particular, there is a danger that some individuals, including researchers and therapists, can find themselves being “shamed” or taken to task on social media for calling vitiligo a disease or talking about sufferers. And, equally, those who take pride in their white patches may sometimes feel they are being judged for not wanting to conceal or heal them.
Mutual respect
Happily, I have not yet heard of any punch-ups breaking out as a result of this so-called vitiligo dilemma. (Maybe just the occasional mild verbal scuffle!) But, when people feel strongly on any subject, there is always a sure fire way to prevent a genuine difference of opinion becoming outright conflict. And that is with a healthy dose of mutual respect. Agreeing to differ is sometimes the best solution all round. It’s a matter of give and take. One side of the argument tries a little harder not to give offence, while the other side tries a little harder not to take it. 😉
I wish my vitiligo friends everywhere peace, health, happiness, confidence and harmony.
