> Mushypea, Sprout et al: Vitiligo
Showing posts with label Vitiligo. Show all posts
Showing posts with label Vitiligo. Show all posts

Wednesday, 26 June 2013

Changing faces

I wrote about my vitiligo a few months ago and thought it time for an update.  The area around my mouth has spread further but I am no longer at that angry, shocked state that I was in then.  The tears that were shed at the beginning no longer flow - I guess in a small way I have come to accept that this is going to be me for the rest of my days so there really is no point in my being upset for the long term.

1.  There really isn't the time for me to wallow in my own self pity.  The toddler that is Munch sees that I am firing on all cylinders from the moment he wakes right up to the moment his head hits the pillow and there is that peaceful sleepy breathing.

2.  There are plenty more worse off than I am and if they can face each day with a smile and the strength that I admire then so can I.

The last time I truly shed tears was during my visit to a beauty counter to get make up advice.  It didn't matter what the make up artist said, or what Sprout said for that matter - for me it mattered that I could still see where the pigmentation no longer was even with make up on.  It is hard to explain how it has picked holes in my self confidence, it is the little things like turning my face away from people when they look at me or the slight hiding of the bottom half of my face when talking and people are looking directly at me.  Chances are others cannot see - helped by my fringe and geek chic glasses so the attention is drawn away from the bottom half of my face.  But inside I am acutely aware and although more accepting in what is happening am still petrified to what is to come when it comes to reactions of others.

There was a point in this here long journey where I could feel that I was losing hold of myself.  Was it time to admit that I needed help in coping as I was sinking into this pit that was all consuming?  As I sit here and write this I realise that the feelings were the same as those when I first had Munch.  That mourning for a me that was changing and evolving.  Sounds vain but it is the only way I can describe it.

My doctor's appointment ended up with blood tests to check for any problems with my thyroid, diabetes and cortisol.  They all came up clear and so I found myself back at the doctors to discuss my next steps.  I know my doctor very well and work with him in a professional capacity so it was a frank and open discussion about what he could offer and for me to tell him what I would prefer to do next.  There were light therapy treatments that ideally needed 50-100 sessions for some or no improvement.  I do not have that sort of time to commit to treatment in that way and in all honesty I would be heartbroken after the 100 sessions if nothing had happened.  To hang my hopes onto that - I am not sure I am strong enough to do that especially as it is not a life threatening condition.

There are steroid creams but that does not appeal to me.  I currently cover up using normal make up and I wholeheartedly thank the lady from the bottom of my heart for being so kind when she helped me and for not making me feel a total idiot for breaking down in front of her.  So, when it spreads across my face to the point where I can no longer cover it myself I will ask to be referred to the dermatology department at a nearby hospital.  It was empowering to know that I made my decisions as to where I want to go next with this.

There's the applying sunscreen every day to protect my skin that is no hardship, the makeup takes all of 5 minutes if not less these days and to be honest all my fears so far are in my head.  I watch the vitiligo slowly get bigger but its progress is slow so the only person that notices it happening is me.  I keep smiling and going about my days as normal - life goes on.

Saturday, 9 March 2013

Face value

Slowly, ever so slowly I have noticed a change to my face since having had Munch.  It started as though I had sunburn around my lips and I gave it not much thought even though I am not prone to burning at all.  I put it down to a change in hormones and carried on as normal.  The change has crept up without me realising until this past month.  The pigment from my skin is slowly but surely vanishing in an ever increasing area spreading outwards from around my lips. I've never been one to pay that much attention to my face other than to make sure I moisturise but this has unnerved me.


It is my face.  It is the part of me that people look at and see every day.  It is my identity in part and watching the colour slowly leave parts of my skin has rocked my confidence.  My brain tells me that in an ideal world it shouldn't matter how I look but part of me is struggling to deal with the change that will keep coming.  How far and how fast will this loss of colour go?  How are those around me going to react?  How will I deal with their reactions?  How will it affect my son growing up?  Do I cover it up or do I wear it strong and proud and set about to educate those that don't understand it?


For now, I am slowly coming to terms with the condition that is changing my face - vitiligo.  It is one where the melanocytes, which are responsible for giving skin its colour, become damaged or destroyed and result in the skin turning white in patches.  I have an appointment with my doctor to discuss my options but for now I am using makeup to cover it up.  In all my adult years I have never thought to put a face on.... until now.  Well, not even a full face but just enough to cover the patches that exist right now.  I am not ready in myself to deal with any comments and questions from strangers, or even friends, so I am 'hiding' until I am stronger.  The tears flow freely as I sit and write this.  This is my reality, it is not one I ever imagined, it is not life threatening yet having it upsets me that I have cried many tears this week.


I had a total stranger say to me,  "What's wrong with your face?" at work this week.  That comment triggered something in me and once home I sobbed in a blubbering heap on Sprout.  That day made my vitiligo real and since then my heart and brain have been attempting to deal with the knowledge.  I am fearful and anxious of what the future brings - there will come a time when I accept the changes that are to come graciously and with ease but I'm working towards that.  My face is only a minor part of who I am.  I just need to have faith that people will be able to look past my face and see the person I am.