My Vitiligo

It dawned on me this morning as I was mulling over my blog that to many people the word Vitiligo means nothing, I mean to be honest it does sound like complete nonsense! Don't get wrong until a few years it would have been a complete alien word to me too. So I figured it was about time I explained the meaning behind my blog name....

Vitiligo: 

a condition in which the pigment is lost from areas of the skin, causing whitish patches, often with no clear cause.

Around six months after Evie was born I began having lumped rashes on different areas of my body, they varied from my shins to my forearms to my feet. They were the sort of rash you just have to itch, I'd often itch my legs until they bled as I couldn't stop myself once I had started (TMI I know!). The rashes would come and go and after a couple of weeks I decided a trip to the doctors was in order, the doctors decided it was simply Hives and could have been caused by a food allergy. It was suggested that I tried removing certain foods from my diet to help determine what was causing these rashes but after numerous attempts and weeks of removing different foods nothing seemed to be making a slightest bit of difference. Oh and just to add into the mix my face had started swelling up too, just randomly. So I'd quite often one minute look like a normal human being and the next look like a hamster. I returned back to the doctors for them to suggest a blood test, to check my thyroid. Apparently pregnancy and labour can do assorts of random bizarre things to your body and this could be one of them! The blood test came and went, with nothing to report back other than my iron levels will still low. But that wasn't new news! The doctors were pretty much stumped.

A few months later I had noticed some white patches on the skin joining my arm to my shoulder, I returned to the doctors and so so so luckily managed to get a standard GP appointment with the skin specialist GP at my surgery. She took one look at the patch and straight away seemed to have a good inkling what was going on! She asked me to have a look and see if there were any other patches I could notice on my body. In the mean time she referred me onto a skin specialist at the hospital but there were no treatments she could give me from the pharmacy.

Around 6 weeks later it was time for my specialist appointment, to say I was nervous was an understatement. I had no idea what I was going into. Wether there would be a treatment, a cure, a cause. Would the doctor be nice? How often would they see me? I had so many questions whizzing around in my head and so many emotions bubbling up inside.

The answer was.... no they didn't have a cure, they didn't know the cause either (although I've done my research!)there were treatments although everybody reacts to them differently. The doctor, consultant I can't remember his correct title was awful. Chuffing hell, don't get me wrong the NHS is a god send but this particular constant couldn't have left me feeling any lower. I spent most of my appointment in tears, unable to understand what was being said and in a mist of confusion. After being prescribed some cream I was sent over to have my photos taken and when I say photos I meant photos. I had every area of my body photographed in every angle and position that had a patch of Vitiligo on. Nobody had warned I'd be stripping down my underwear!!

6 months later it was time for my next appointment, I had stopped using the cream roughly a week after my first appointment as it had made my skin sore and I couldn't face the skin not only being different to the rest on my body but sore too. I was dreading this appointment, I felt sick to my stomach with worry and had that huge sense of disappointment hung over me that I still wouldn't get any answers. I again had the same consultant, I again got no answers and I again left in tears. The consultant was hearing what I was saying but not listening. Not dissecting the emotional damage the condition was doing to me.

After we left the appointment my mum told me to file an official complaint, so I did. I always made a request that in any future appointments I would see a different consultant and if that meant I would be waiting longer between appointments or travelling longer, I was happy to do either or both. I needed to stop anybody in the same position as me from being forced into a horrible headspace from a condition that has so many already unanswered questions attached to it. 

A few years down the line now I have tried every treatment there is going, I've even done a clinical trial through the hospital to help determine wether or not some of the treatments combined help. But nothing will alter my skin. Since I have learnt to control my stress levels I have noticed a difference, slowly some of the patches are disappearing but there is still a very large amount of my body covered in the patches. 

But the condition didn't just affect me physically, it affected me mentally and emotionally too. At the age of 19/20 the age where you've finally learnt to do your make up half decently, your spots have calmed down and most women are looking their best suddenly the first barrier you have as a human- my skin- had changed and in my eyes it was dramatically. I found it hardest in summer when my 'normal' skin tanned the usual fab tan colour it goes and the Vitiligo patches stood out so much or at the gym where you have most of your skin exposed. I felt like a fish in a tank as though people were staring at something they hadn't seen before. I had comments about a dodgy fake tan or once something about me being desperate and bleaching my own skin. There were many times where I would sit and cry over something I had no control over, something so many people knew nothing about, something I didn't even know the cause behind. I have spent many hours reading into research about the cause of Vitiligo but there doesn't seem to be a clear cut diagnosis. Some research suggests high amounts of stress, pregnancy or a gene you inherit from generation to generation. But nothing concrete. 

I am a lot more comfortable in my own skin now, there are many times I forget I look any different to the next cherub thats stood next to me. Don't get me wrong there are times when I wish my skin didn't look the way it did but the reality of it is I can't do anything about it, I have two children to raise, a household to run and a husband to love so whats the point in worrying over something I can't change? 

Hopefully one day more research will be done and answers will be given to the questions I have. But until that day comes I will love my skin and not be ashamed of the condition I have and I hope that anybody else out can do so too. 

Much Love

Soph

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