I recently caught up with Caroline Haye who runs The Vit Pro website and blog. Everyone's vitiligo story is different, and Caroline's is the result of nearly 50 years of experience. Her website offers friendly advice, guidance, support and hope for others with vitiligo.
When did you first develop vitiligo?
My vitiligo began when I was just a toddler, starting off with a penny-sized white patch on my ankle bone and a similar one on my spine. These were followed later in childhood by more patches... Around my eyes, at both corners of my mouth and on the backs of my hands.
I only remember one childhood visit to the GP in connection with my skin. The doctor duly diagnosed vitiligo and had very little to say about it, apart from the fact that there was no treatment and not to worry about it. The only encouragement he offered was to reassure my mother that it would not make my eyes turn pink like an albino’s!
The condition spread much faster in early adulthood. And by the time I reached 50 I was roughly 80% pure, blinding white. I had no colour at all left on my hands, feet, face, lower arms, lower legs and chest. And I had large white patches on my upper back and either side of my waist.
How did you feel about these changes to your appearance?
I often felt quite panicky. Not knowing where or when I would discover the next patch was scary. And not being able to do anything to stop it made me feel powerless. I also felt isolated because, until the internet and social media came along, vitiligo seemed to be virtually unheard of. The doctors I saw knew almost nothing about it. And I didn’t know of anyone else who had it. It felt as if I had a strange and secret disease... And I was the only person on the planet to suffer from it.
Now I sometimes wonder how many other people I walked passed in the street back then also had vitiligo and, like me, were covering theirs up too.
So, how did you cover it up?
Unfortunately, there was nothing like Vitiliglow back then. So I started using make-up at an early age.
I can remember being asked by other children at school why I had white eye lashes on one eye and feeling completely mortified by this. They didn’t bully me: they were just curious. But I was so sensitive about what was happening to my skin that I didn’t want to have to answer questions about it. So, from then on I was careful to cover up my blotchy skin and white lashes. I used mascara and foundation and always chose my clothes carefully so as to hide my patches.
Later on, when the first fake tans came along (you know, the smelly, streaky orange varieties) I used those. They were better than nothing. But, as my vitiligo was so advanced by then, they took ages to apply. It was like trying to fill in a drawing in one of those colouring books without straying over the outlines. The whole process was laborious and quite depressing.
Given how hard you tried to hide yours, how come you became a vitiligo blogger?
Yes, it is quite ironic. I’d spent years avoiding the topic, only for it to become an all-consuming interest. Like a lot of things in life, it happened organically. I didn’t wake up one morning and decide to become a vitiligo blogger. There were really three catalysts…
The first, and most dramatic, was that over the course of about 18 months, I unexpectedly recovered almost all of my lost pigment. It began with a few freckles that I mistook for remnants of fake tan and tried to rub off in the shower! Then, almost daily, new freckles appeared and eventually joined up. I can’t describe how excited I was. And I wanted to share that excitement with others. In particular, I wanted to let people know that, despite vitiligo being incurable, pigment can actually come back. It would have made such a difference to me if I had known that when I was younger. So I desperately wanted to share the good news.
The growth of the internet was the second prompt towards my writing about vitiligo. After a lifetime with no access to information, I suddenly found that the internet was an Aladdin’s Cave of the stuff. I set about reading everything I could find on the subject and became increasingly fascinated by it. It helped me to understand more about what may have caused such a turnaround in my own condition. And it enabled me to appreciate how the impact of vitiligo varies from one person to the next… But also how it can unite people because of their shared experiences.
My third reason for starting a blog was that I have always enjoyed writing. (I wrote poetry when I was younger. In fact, I think it was one of my coping mechanisms. And I still find it therapeutic, so I have included some vitiligo poetry on my site.) The excitement I felt over my own situation, coupled with my new-found passion for learning about vitiligo, just needed to find expression in some way. And the natural choice for me was to write.
Who is The Vit Pro blog designed to help?
Well, before I even started blogging, it just began as a simple website with a few pages describing my personal vitiligo story. (Originally, it was called Vitiligo Protocol, later abbreviated to The Vit Pro.) My motivation was to encourage others who may have given up hope of ever seeing any improvement in their condition. A lot of readers came into this category, as I soon found out when they started contacting me and sharing their experiences.
But I also discovered that a lot of people were simply thirsty for information. Just like me, they had hit brick walls in the past when they tried to find out more about vitiligo. And, like me, many of them felt isolated. So, I started adding anything and everything I could that might help visitors to understand more about their condition and also feel less alone… Which is how the blog started.
Does your vitiligo blog have any particular focus?
For a long time, my main focus was on the subject of possible treatments… From natural therapies to medical research. This was because that was my particular interest. But I gradually realised that not everyone with vitiligo is preoccupied with how to cure it. An increasing number of people only want that kind of content occasionally so they can stay up to date with current developments. What really interests them is finding ways of feeling comfortable in their skin the way it is.
So now I also post on issues like body image, self confidence, vitiligo awareness and community. I especially love sharing tips that make living with vitiligo easier and more positive. In a nutshell, I try to make my blog the kind of resource I wish had existed when I needed it the most.
What is the most important thing you have learned about vitiligo?
That’s a hard question to answer. But I think the most important thing I have learned is that you don’t need to feel like a victim just because you have vitiligo. It is something none of us ask to have. But there are a lot of very effective ways of coping with it... Whether that means embracing it, camouflaging it or treating it. You don’t have to feel helpless. And I’ve learned that anything you do to empower others also empowers you… Which is why I admire Polly so much for creating a product that enables people to feel confident about their skin.
Having vitiligo has been a blessing in many ways. It has definitely made me a stronger person. And I think I am a more compassionate one too. Knowing first hand what it is like to live with a visible difference definitely makes us more empathetic to others in a similar situation. And I think that this is one reason why the vitiligo friends I have come to know over the past few years are some of the strongest, kindest and most compassionate people I have ever come across.
For more information about The Vit Pro, visit www.thevitpro.com, or subscribe to the blog at www.thevitpro.com/subscribe.