... is curable
In my opinion, the worst symptom that anyone with #vitiligo can suffer is not the loss of skin pigment: it is the loss of hope. If you lose patches of colour, but still have hope, you are so much more likely to find a treatment that helps. But if you lose your hope of finding something, it becomes highly unlikely you ever will. Not only that, but without hope you feel helpless and are not in any position to offer hope, or help, to others.
For years I believed what successive doctors told me and what was written in the official medical literature of the time, which claimed - in so many words - that vitiligo was an incurable, purely cosmetic, non life-threatening condition that must simply be endured. This left me feeling both hopeless and helpless. The only coping strategy left to me was to use every means possible to cover up my white patches and pretend to myself, and the rest of the world, that they were not there. The trouble with that strategy was that, whilst I was successful in hiding it from the rest of the world, undressing and taking off my make-up at the end of the day was a fresh reminder of my “secret life”.
I read recently about an old lady whose Alzheimer's meant she suffered the full force of bereavement on a daily basis every time she found out that her husband had died years before. Well, that is the best way I can describe my feelings during those years. The more successful I became at putting my vitiligo out of my mind during the day, the harder it was to come to terms with it every time I was forced to look at it. What I now realise is that living in denial for decades is incredibly stressful and destructive. The inner tension it causes is like being at war with yourself and you can never fully relax and be the real you. To me, this is the literal definition of being uncomfortable in your own skin.
Looking back on it all now, I think there were probably only two ways I could have relieved this constant tension and they are not mutually exclusive. One would have been to stop trying to hide my skin condition from others and just make my peace with it. Some strong people are able to do this and I cannot describe how much I admire them. But I'm sure many people reading this blog will understand me when I say that I simply didn't have it in me to achieve that kind of acceptance or to expose myself to the curiosity and comments of others. The other way – which I kind of fell into by chance – was to be proactive, rediscover my lost hope and take my treatment into my own hands.
For any readers who don't know the story of my re-pigmentation you can find it here. I won't go through it again in this post. But what I do want to emphasise is that the very process of discovering a protocol that helped my vitiligo finally helped me to stop living in denial. Even though it was just a few freckles to start with, the visible proof that my white patches were capable of producing pigment allowed me to think about my condition without my former sense of despair. Just the very fact of changing my outlook from resignation to being proactive totally changed the way I felt about myself and my whole future. I immediately felt a sense of normality returning - as if I were re-joining the rest of the human race for the first time in decades. I finally realised I was not helpless after all. Not only that, but the process empowered and motivated me to start sharing my new found hope and experiences with others too. The result was my story site and blog (and the hundreds of email conversations I have had with vitiligo friends all over the world ever since).
You may be reading this and thinking you have been disappointed too many times by false hopes and treatments that didn't work. I have certainly felt that way in the past. The approach that eventually worked for me has helped a lot of other people too but I don't suppose it works for everyone. Effective vitiligo treatments are not a one-size-fits-all. I know this myself because I tried several therapies in the past, including PUVA, which is proven to help some people but made absolutely no difference to my vitiligo at all. But I take the view that enough of us have proved that vitiligo can be reversed and that we no longer have to believe those doctors who tell us nothing can be done. We no longer have to feel hopeless and helpless. We can be proactive now, without having to wait for a miracle cure to be invented. There are lots of things we can do right away, like learning as much as we can about how our skin produces pigment, what other health conditions we might have that could be contributing to our vitiligo, avoiding environmental triggers, improving our diet and trying safe treatments that have worked for others.
Finally, supporting each other and contributing to vitiligo groups and research are also ways of breaking free from the sense of helplessness that so often accompanies this skin disorder. Vitiligo research projects and support organisations around the world often ask for the participation of vitiligo sufferers and their families in helping to develop treatments or improve available support for patients. I mentioned one of these on this blog a few months ago. It was a UK based trial - the "Hi-Light Vitiligo Trial" - designed by the Centre of Evidence Based Dermatology at the University of Nottingham to test the effectiveness of home-based light therapy with hand-held UVB phototherapy units. The same team at Nottingham has also been asking for feedback from people with vitiligo, or carers of children with vitiligo, to find out more about their experiences of looking for information or treatment for the condition. This involves answering a survey which will be used to raise the profile of vitiligo amongst health professionals, particularly GPs. The findings will also help to form plans for advertising the findings of the HI-Light study in the future. So, if you live in the UK and would like to contribute to this survey, there is still time to participate by clicking here – but only if you are quick. The deadline is this Sunday 13th March.
My name is Caroline.