The most devastating vitiligo symptom …

Last Updated on 14th May 2024 by Caroline Haye

… is curable

In my opinion, the most devastating vitiligo symptom 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… In which case you are not in any position to offer hope, or help, to others.

For years I believed what successive doctors told me. And I believed what I read in the official medical literature of the time. They all claimed – in so many words – that vitiligo was incurable. That it is a purely cosmetic, non life-threatening condition that must simply be endured. This opinion 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. I simply pretended to myself, and the rest of the world, that they were not there. But there was a problem with that strategy. I was successful enough in hiding it from the rest of the world. But undressing and taking off my make-up at the end of the day was always a fresh reminder. A reminder of my “secret self”… The blotchy reality behind the façade .

I read recently about an old lady whose Alzheimer’s meant she suffered the full force of bereavement on a daily basis. It hit her 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 looked 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. 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. In other words, to 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… Nor to expose myself to the curiosity and comments of others. The other way 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 by browsing the menu at the top of this page. I won’t go through it again in this post. But what I do want to emphasise is that the very process of finding a therapy that worked was therapeutic. It finally helped me to stop living in denial. It was only a few freckles to start with. But the visible proof that my white patches were capable of producing pigment changed the way I thought about my condition. I no longer felt the same sense of despair. (See My Vitiligo Pictures.)

New hope

My outlook changed from resignation to being proactive. And this revolutionised the way I felt about myself and my whole future. I immediately felt a sense of normality returning. It was 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 with others too. The result was this story site and blog. (Plus 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. You may have had too many 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 recognised therapies in the past. And they made absolutely no difference to my vitiligo at all. But I take the view that enough of us have our own proof that vitiligo can be reversed. So 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 come along.

There are lots of things we can do right away… Like learning as much as we can about how our skin produces pigment… And what other health conditions we might have that could be contributing to our vitiligo. Not to mention 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 participation in various programmes. These sometimes aim to raise awareness, develop treatments or improve available support for patients.

Sadly, vitiligo itself is not yet curable. But new treatments are on the way. And there are many existing therapies that are effective in reversing and managing it. The key to finding the best ones for you is to be proactive and make sure you are as knowledgeable as possible on the subject. (And this is pretty easy nowadays, thanks to the internet.) Taking a positive approach to treatment, and to life in general, can make all the difference to your results. And, at the very least, it will protect you from the worst vitiligo symptom of all, which is discouragement and loss of hope.