And how I have my skin to thank for my internet addiction!
Hardly a day goes by that I don't marvel at the way the internet has changed daily life for most people on the planet. It's hard to believe that it has only been two and a half decades since the World Wide Web (doesn't that sound quaint now?!) was invented. I'm sure I'm not the only one who struggles to remember a time when there was no such thing as going online, emailing, messaging, social media, internet shopping, mobile apps and, above all, 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 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, 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. Having grown up and lived almost half a century with little or no access to helpful information on my poorly-understood, never-talked-about, incurable and largely ignored skin condition called vitiligo, the advent of the internet was like finding Aladdin's Cave. Suddenly, I could ask any question I liked about it and get a whole bunch of answers 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.
However, the availability of massive quantities of information about vitiligo comes with a downside – and the downside is: 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 and 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 too far removed from that of the international intelligence services, trying to keep ahead of the global terrorist threat: swamped 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 who has first-hand experience of having the condition and who would be willing just to talk through it.
This is the general approach I tried to adopt myself when I was asked earlier this year to write a #Vitiligo-Guide for Mind and Skin (an excellent charity I first came across a year ago) to offer some straightforward #advice to anyone who might be looking for guidance from someone who has been through what they are going through. I tried to include all the basic information I would have liked to have when I was first diagnosed but I also wanted to keep everything as simple as possible. The Guide covers the following points:
You can find the full text here but, in case you don't want to read the whole thing, I have copied the 10 #tips portion below and inserted some additional links that may provide useful further browsing ...
My name is Caroline.