Last Updated on 12th June 2023 by Caroline Haye
Talking therapies can help
A common complaint among vitiligo sufferers is that their doctors lack an appreciation of the psychological effects of their condition. They just don’t seem to get that vitiligo is not just about skin.
I don’t doubt that there are many medical practitioners out there who are sensitive and sympathetic to their vitiligo patients. But I do know from personal experience (and from the many stories I hear from other vitiligo sufferers) that this is not yet the norm. In fact, many doctors have a distinctly poor bedside manner when it comes to this misunderstood and under-represented skin disorder.
Just because vitiligo is not life-threatening and just because there is no definitive cure many doctors seem to take the view that a simple diagnosis is all that is required of them. If you are very lucky, you might get some scraps of additional information. But these are, more often than not, along the lines of “Yes – it is vitiligo… No – it won’t kill you… No – there’s no cure… Go away and live with it and don’t let it worry you… My job here is done”.
Vitiligo sufferers can talk to each other now
If it weren’t for organisations like The Vitiligo Society and Vitiligo Support UK in the UK and the American Vitiligo Foundation and their counterparts in other countries around the world, support for those who have to live with this condition would be thin on the ground. Above all, without the internet, social media, blogs and online support forums like My Vitiligo Team, people with vitiligo (sometimes called leukoderma) would still feel as isolated as I did growing up before the world wide web ever existed.
It’s true, I know, that awareness of vitiligo has never been as high as it is today. (Though I do wonder if that would be the case without the publicity surrounding Michael Jackson.) And research has never been as well funded as it currently is. But vitiligo is still very much the poor cousin in the world of dermatology. And it baffles me why that should be.
How vitiligo affects mental health
A person’s skin colour is a key component of their identity, their culture and their self-image. To have it change randomly, piece-meal and virtually overnight can be distressing, frightening, depressing, alarming, devastating, stigmatising… I could go on … In short, pigment loss is only one of the symptoms of vitiligo. The mental symptoms can be just as bad, if not worse. If you have been affected by vitiligo you probably know what I’m talking about.
In view of all the above, it is encouraging to note that mental health issues are very much in the news nowadays. To the extent that the subject no longer carries the stigma it once did. And more people are open to the idea of asking for professional help. The kind of counselling that we used to call “analysis” now encompasses a whole range of talking therapies. And these can be every bit as important as skin treatments.
7 thoughts on “Treating vitiligo is not just about skin”
Your site is great Caroline, very helpful – and this is a great point. I have felt much better about my continually spreading vitiligo since doing cognitive behaviour therapy. I would highly recommend this to any vitiligo patient.
A great resource is also “skin deep” written by Grossbart. Very very insightful and sounds like along the same lines of “mind and skin” you mentioned above.
Thanks for that, Erin. I will do a separate blog post on the subject 🙂
I have extreme vitiligo which is devastating. I would love to be part of any media to help me deal. I use microskin makeup which certainly helps. I would be open to any info
Thank you Lisa
Awesome Article!!! Its simply superb.
good post keep going…
I sympathise with your distress at having widespread vitiligo, Lisa. You are welcome to correspond with me and I will be happy to help in any way I can. I will email you too in case you don’t see this reply on the blog.
🙂