Talking therapies can help
A common complaint among #vitiligo sufferers is that their doctors lack an appreciation of the psychological effects of their unexplained and progressive pigment loss. I don’t doubt that there are many medical practitioners out there who are sensitive and sympathetic to their vitiligo/ #leukoderma patients. But I do know from personal experience - and from the many stories I hear from other vitiligo sufferers - that the mainstream medical profession (at least here in the West) - is not famous for its great 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”.
If it weren’t for organisations like The Vitiligo Society in the UK, the American Vitiligo Foundation and their counterparts in other countries around the world, organised 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 Vitiligo Friends, people with leukoderma would still feel as isolated as I did growing up before the world wide web was ever conceived.
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 that 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 I am baffled as to why that should be. 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 ... If you have been affected by vitiligo you probably know what I'm talking about.
In view of all the above, I was encouraged today to come across a new(-ish) UK charity called Mind and Skin whose aims revolve around using talking therapies to improve the quality of life for people whose skin conditions cause them psychological distress. Here is their "About Us", taken from their website:
Mind and Skin is a charity that aims to improve the daily quality of lives for skin disease sufferers. We will provide “talking therapies” for our service users. We help dermatology patients by increasing their self-esteem, reduce stress and manage the physical and psychological aspect of their condition.
The charity will generate new research to lobby and influence health care policies so that dermatology patients can be offered “talking therapies” from their local health care provider. We aspire to promote improved communications between Government, all health related officials and their patients.
Mind & Skin is a psychodermatology charity that was established late 2013 in the county of Sussex.
We are the only dedicated psychodermatology charity in the UK. We have a board of trustees who are responsible for the direction and governance of the charity. The charities services are delivered by a combination of staff members, volunteers and official advisors.
In my opinion, this is very worthwhile work and I wish everyone involved with Mind and Skin success in communicating their message and making a difference to a lot of lives in ways that the medical establishment so often fails to do.
A vitiligo blogger since 2011. My name is Caroline. I had vitiligo for nearly 50 years before finding an effective treatment. I created this blog to share my experiences with others affected by this skin condition.