Fifty shades of white - Vitiigo

Should I rave or should I rant? Well, it should come as no surprise that I am going to rant yet again! This time it is against my decision to use this attention seeking title. I know many people pretend not to have read the book ‘Fifty shades of grey’. Well, I am not one of them. I don’t pretend; I have genuinely not read the book because from what I hear, the best thing about the book is its title. All smut, no substance doesn’t actually entice me to read a book – give me a good crime thriller any day (or night which is when I tend to read). Anyway, I digress, as one often does while ranting. Just to be clear, I am not ranting against the book, its author or its readers. I haven’t read the book (or books, I have heard, horror of horrors, that there are sequels) so, despite the impression I am giving, I am fifty shades of neutral.

I guess the reason I am actually using a slightly frivolous title is because it is a terribly non-frivolous and personal topic that I am writing about. A few months back, I noticed a small white patch (the size of a 5 pence coin) on my face, between the left side of my mouth and my jaw. I squinted to get a closer look and then dismissed it. But it kept getting lighter and lighter (hence the title) until I could ignore it no more. It also increased in size very gradually. The corners of my eyes near my nose started to lose pigmentation and a few more white spots decided to take up residence on my face, like unwelcome guests at a party thrown by teenagers when their parents are away. And, just like those parties, it appears to be leaving devastation in its wake.

My GP has referred me to a dermatologist and it remains to be seen what the outcome will be. I suspect it will confirm Vitiligo. I don’t recall any member of my family having Vitiligo and as with everything that doesn’t affect you personally, it is easy to dismiss it or feel mildly sorry when you see someone who suffers from it. I remember when Michael Jackson’s skin colour changed and he said that he had Vitiligo, I harrumphed in disbelief. A likely story I remember thinking at the time. In my defence, I wasn't the only one who thought or said it, or indeed harrumphed. I have done some research and apparently it is an auto immune condition and, with no familial connection or physical cause, it can be caused by stress. Now, I am not a medical person but I have a sneaky suspicion that ‘auto immune condition’ and ‘stress’ are sometimes polite ways of saying that no one has a bloody clue! And if the word ‘idiopathic’ is thrown in as well, your suspicions are confirmed and your goose is well and truly cooked.

So, if I do have it, how do I cope? It’s not like a ‘proper’ disease where people trip over each other to offer ‘thoughts’, ‘prayers’ and hope for a ‘cure’. To start with, there is no apparent cure. And thoughts and prayers appear to be reserved for life threatening diseases (please forgive me for sounding ungrateful and a bit sorry for myself).Never mind that psychologically this disease can be life destroying. It can also be extremely isolating. No one calls to find out how you are; how you are feeing;  whether the disease is contained or spreading.The reason for this, I suspect, is that at some point I am sure most of us dread getting a serious disease, hence we can empathise but I suspect no one actually imagines suffering from Vitiligo. Why would they? It always happens to someone else…..until it happens to you.

I will be seeing a specialist next week but I am not holding my breath. That would be plain stupid, since a whole week of holding my breath would lead to fifty shades of blue! Seriously, I can guess what the outcome of the diagnosis will be, but until then I will keep calm and avoid looking in the mirror because, superficial though it may seem, it saddens me to gradually see the face of a stranger looking back.

To be continued.........

25-10-2016

Well, I did see the dermatologist and as predicted she diagnosed Vitiligo. I got emotional and thank goodness she was very empathetic. She prescribed a very potent steroid ointment which I started using and amazingly, after about two months, my skin started re-pigmenting! Not a 100% but enough to make me cautiously optimistic. I was loathe to stop after two months as advised, so I carried on for a bit longer and watched as more pigment kept filling in,very slowly but going in the right direction. 

 I had an appointment with my dermatologist in August and it could not have gone better. She and I celebrated the fact that my lesions were practically re-pigmented bar for a slightly speckled look. I actually didn’t have any makeup on because I was seeing her and I wasn’t self-conscious for a change. BUT and that’s a big but (hence the caps) I had to stop the very potent steroid cream as it would thin my skin and cause even more problems. Thanks to the internet I have actually been able to see the result of overuse of this steroid. She cautioned me as well, so I moved to tacrolimus and the patches started reappearing. Not like wild fire but spreading nonetheless. And back I go to feeling self-conscious, depressed and all the rest. This is a cruel disease. Not just because it changes your appearance physically but it can sometimes change it in a cruel way like someone with a paint brush and a sick sense of humour. For example, the pigment below my nostrils started fading. Which is bad enough but it decided to leave a thin line of pigment, thereby giving the appearance of two brown streams pouring from my nostrils. Yes a disease with a macabre sense of humour and I had to get it.

I have been reassured that the tacrolimus can actually work but it can take a while, so I am waiting (though not holding my breath just in case I turn blue and heaven knows I don’t need another shade to add to my already ‘interesting’ face!) with a touch of optimism and some cynicism.

It is now March of 2017 and I am up and down on this roller coaster Vitiligo ride. Unfortunately there appear to be more downs that ups, so I have developed a new philosophy, "it is what it is". With acceptance comes peace.