Living with vitiligo on a day-to-day basis, the condition of my skin was never far from my mind. Over the years I always tried to think about it as little as possible. But deep down I often felt isolated. And, in a way, I felt alienated, despite having supportive parents and a wonderful husband. It was not until my recovery was well underway, and with the benefit of hindsight, can I really came to appreciate how profoundly vitiligo impacted my life.
But then I became aware of the Vitiligo Society and realised I was not alone in having to contend with this condition on a daily basis. (And since then, I’m glad to say, many more vitiligo support groups have sprung up.) Reading about research and hearing others’ experiences helped me to feel less isolated. It gave me hope that one day there would be a cure. I would recommend to anyone affected by this condition to join one of more of these support groups. Or at least visit their websites.
Of course, the internet has radically changed the situation for vitiligo sufferers over recent years and social media in particular now means that no one need feel alone. There are many vitiligo groups and forums out there where we can support each other and swap knowledge and experiences. Some of these are listed on the Useful Links page.
Growing up with vitiligo
In my late teens and early 20s I enjoyed being a student, travelling, and having a good social life and a great bunch of close friends. My vitiligo, and the need to conceal it, was never very far from my mind. But I was too preoccupied to let it slow me down very much. I was successful at, not only hiding it from others, but even managing to forget about it myself most of the time. My anxiety and depression over it would occasionally surface whenever a new boyfriend came on the scene. And I would worry about him noticing something wrong with my skin and dread having to explain what it was (mainly because almost no one seemed to have heard of it).
I longed to be the carefree person I had been before vitiligo…
Throughout my late 20s and 30s I found the psychological effects of vitiligo a significant burden to bear. I had married by then and my husband was very understanding. He never thought me anything other than beautiful. But my pigment loss had spread quite considerably by then. And it seemed to impact on every area of my life.
I felt saddled with all sorts of irksome considerations. Like the need to select clothes that would give me sufficient camouflage. The importance of always having to have a full face of make-up. The difficulties of avoiding social situations like beach holidays with friends or trips to the swimming baths, where I might have to reveal inadequately camouflaged skin.
Before going on summer holidays I would spend hours applying self tan to intricately patterned areas of white skin that looked like the pieces of a jigsaw puzzle. And in hot climates, I would long to lie in the sun with everyone else but would constantly dive for cover every time I felt myself burning or starting to sweat off my fake tan. I found myself having to do the opposite of everyone else around me. As the weather became sunnier, everyone else would take garments off and I would put more on! This kind of experience reinforced the feeling that I was an outsider. I felt like an oddball. I became more introverted. And I wondered if others thought I was being unsociable or unfriendly.
In short, I became aware that vitiligo had changed me on the inside, as well as the outside.