Last Updated on 2nd September 2022 by Caroline Haye
And how I have my skin to thank for my internet addiction!
I grew up and lived almost half a century with little or no access to instant information. In fact there was no information at all on the poorly-understood, never-talked-about, incurable and largely ignored skin condition that we call vitiligo. So, for me, the advent of the internet was like finding Aladdin’s Cave. Suddenly, I could ask any question I liked about it. And, hey presto! A world of vitiligo information would appear in less time than it takes to say… “There’s no cure – go home and live with it”. This was wonderful, it IS wonderful. And it is getting better all the time as good advice, clinical research and social media support all become more accessible.
Hardly a day goes by that I don’t marvel at the way the internet has changed daily life for most of us. It’s hard to believe that it has only been three decades since the invention of the World Wide Web. (Doesn’t that sound quaint now?!). I have noticed, though, that a lot of my contemporaries spend much less time online than I do. (A few even choosing not to take part in the internet revolution at all… Maybe feeling that it all happened slightly too late for them). I suppose I have my vitiligo to thank for being more internet savvy than most of my peers.
I’m sure I’m not the only one who struggles to remember a time when there was no such thing as going online. No emailing, messaging or social media. No internet shopping, mobile apps and, above all, no endless googling on every topic under the sun. (Mind you, as a post menopausal woman, I struggle to remember lots of things!) I wouldn’t mind betting that the majority of us would find it difficult to say which would be more inconvenient…An interruption to our water supply or to our internet provision! It seems that access to instant information “on tap” has, literally, become as essential to life as water. I, for one, would feel as if I had lost my right arm if I had no access to vitiligo news.
However, the availability of massive quantities of information about vitiligo comes with a downside. And that downside is… exactly that… massive amounts of information about vitiligo. There are now such vast quantities of the stuff out there that it can be a tedious and time-consuming task finding exactly the right search terms. Not to mention sifting through the mountains of results. And then it is not always easy to separate the reliable from the misleading or misinformed.
For the past 6 years or so I have spent a tremendous amount of time researching everything I can find on the subject. And I sometimes feel that the task is not dissimilar from that of the international intelligence services. It’s like trying to keep ahead of the global terrorist threat… Awash with data and hard-pressed to distinguish what is relevant from what isn’t.
Having said all of that, I’m not complaining. I love researching. I admit I am addicted to it. And I love sharing what I find. But I still sometimes find myself thinking how much easier it would be for someone who is newly diagnosed with vitiligo to have a real, live person sitting next to them. Someone who has first-hand experience of having the condition and who would be willing just to talk through it. A Vitiligo Guide, if you like.
