A while ago... I have been busy... Christian Krueger PhD sat with me and we chatted one on one about the psychological effects of vitiligo. Christian has not only conducted a comprehensive literary review soon to be published but also recently conducted his own study on the psychological impacts of childhood vitiligo.
Christian was a wealth of knowledge and I thank him for sparing this time for me.
He spoke about the impact of being stigmatised as being someone with vitiligo and also competencies and the need for all children to have one.
Stigmatism
People with extensive obvious vitiligo cannot meet people without it being one of the first thing that they discuss. This then stigmatises the individual. They believe that this is who they are because it is continually reinforced by people. Here we explored the Explain, Reassure and Distract technique. See previous post. Very useful tool for the kids.
Competencies
This is "your thing", those things that define you. "Hi , I'm Emily, I'm 11 years old, my friends are A,B and C, I have 3 sisters and I love water polo. We train 3 times a week and play a game on Saturdays". Water polo could be described as Emily's competency. It's that thing that the kid loves. You don't need to be good at, just love it, and love doing it. Christian said that every kid should have a competency but especially kids with physically challenges so that they see themselves as being this thing, not the kid with vitiligo.
So... We then thought that it would be quite useful to have a session with the kids where we put these findings and strategies into good use. We did this for kids club. Christian and Paula ran the show. Paula is a cognitive behavioural therapist (CBT) working with the NHS in the UK. Paula is also a world class volleyball player (no jokes) and is here to help the Prof with kids club, physical activities and kids without same gender parents. *
The first thing the kids discussed was their own experiences of teasing. It quickly became evident that the kids were unable to discern the difference between curiosity and teasing**. Mostly they ought they were one the same. That is, all bad, and made them become defensive. Paula gave them some great strategies to cope with teasing (applicable to all teasing, not just Vit-teasing).
This session was very ad-hoc, so we have discussed with the Prof how this might become a regular thing for the kids.
References
Disease related behavioural patterns and experiences affect quality of life in children and adolescents with vitiligo. To be published in the International Journal of Dermatology in June 2013.
*when kids come to the Dead Sea, ideally mothers should bring daughters and father come with their sons. This is not always feasible so there is a helper to the Prof in the girls (not women) solarium and likewise in the boys (separate from men) solarium. It makes sense that girls would feel uncomfortable being naked in front of other dads.
Best to keep this in mind when planning your trip.
** that is, they could not tell that "hey what is that white mark on your neck?" is natural curiosity. They were defensive about this sort of enquiry. With some other examples, the kids could recognise that if someone new started at their school who, say had one eye, then they might have some questions. This is not teasing.
The kids could always recognise real teasing without a problem. Eg., "nice grey hair granny". This is one example.
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