Last Updated on 25th May 2023 by Caroline Haye
Help yourself and help others on June 25
As the first global celebrity ever to have his name overtly linked with the skin disorder, Michael Jackson became an obvious figurehead for vitiligo campaigners around the world. The designation of June 25th (the day of his death in 2009) as World Vitiligo Day was therefore an apt one. The pop legend himself was a timid and reluctant vitiligo champion by today’s standards. And, sadly, his reputation became tarnished during the last years of his life (for completely unrelated reasons). But his public revelations on the subject of his skin certainly paved the way for thousands, of others to become more vocal and enthusiastic vitiligo advocates.
Celebrities and “ordinary” people alike now champion the cause, both online and offline. And a new sense of pride and positivity have developed where shame, secrecy and hopelessness were previously all too common. So much so, that World Vitiligo Day has become, not just a campaign, but also a day to celebrate how far we have come. The future now looks much brighter than before for everyone affected by this historically mysterious and incurable pigmentary disorder.
Will you be doing anything special to mark the occasion? You may already have plans or you may be reading this and wondering if there is anything you can do. I asked myself that question and here are four ideas that came to mind. (I’m sure you can think of plenty more too).
1. Attend a World Vitiligo Day event
If it is practical for you to attend an organised event, go along and take part. Not only will you benefit from the inspiration and mutual support, but you will be passing on these same benefits to others.
Probably the highest profile event for anyone in the US this year will be the 2023 World Vitiligo Day Event in Atlanta on June 23rd – 25th. And here in the UK we can look forward to some amazing speakers and a sense of camaraderie in the comfort of our own home by attending a virtual celebration of the day, organised by the Vitiligo Society
You may alsobe able to find some in-person events closer to home. So why not check out any vitiligo groups you belong to or contact one of the relevant organisations listed on the resources page of the Vitiligo Clinic and Research Center website? There is also a list at the bottom of The Vitiligo Society’s home page.
2. Organise your own vitiligo support event
Get social
If there are no meetings or events in your area, that does not have stop you. You could always organise your own (suitably COVID-safe) event and give others the chance to join in. It would not need to be on a large scale in order to be worthwhile and fun. It might simply be a matter of meeting up informally with vitiligo friends for a social of some kind: a meal or an outing.
If you feel like getting creative, you could celebrate with a Pamper Party. (Make sure you use natural products that will not irritate your skin). Or how about a healthy Mocktail and Smoothie party? Experiment with delicious ingredients that are likely to help promote skin health and repigmentation
Get artistic
You might be more interested in helping yourself and others to embrace your white patches. If so, celebrate your uniqueness by holding a Vitiligo Body Art party. Share ways of showing off the varied patterns on your skin. Ash Soto’s book might give you some inspiration for creating beautiful designs. (Again, make sure you use natural ingredients. Pure mineral powders would be my choice. They come in some vibrant colours that would be ideal for creating temporary art.) You could even have a competition for the best designs.
Sticking with the artistic theme, another option is to hold a Creative Vitiligo Workshop. Invite attendees to share their vitiligo art, crafts, fashions, writings and poetry. The creativity and talent that emerges from this might well surprise you. But, if not, it is at least likely to be hilarious.
Get campaigning
If you are feeling more ambitious, you could organise a more formal Vitiligo Awareness Event, or even a fundraiser for relevant charities or specific research projects. Or, if the only contacts you have are online, then why not arrange a virtual get-together instead? And, finally, if you don’t yet have any vitiligo contacts at all, then I highly recommend joining some forums or support groups and making new friends. You won’t regret it.
3. Support your mental health: be “kind to your mind”
Whilst vitiligo events may or may not appeal to you, all of us can certainly participate in the next activity on my list of four. And that is to take some time to nurture your mental health.
In the UK we recently marked National Mental Health Awareness Week, which focused this year on the mentally healing power of Nature… A theme that is especially relevant this year, following a year and a half of global uncertainty and lockdowns.
For generations the psychological effects of vitiligo were vastly underestimated and sadly ignored by the medical profession. Mental stress is a known trigger for depigmentation. Is also a common consequence of it. So it is only right that it should be a subject for discussion and research.
A couple of years ago, the theme for World Vitiligo Day was “It Starts With Me”. This means we all have the power to take responsibility for our own mental health. And yet it is an aspect of the condition that we often neglect because we are so preoccupied with what is going on in our skin.
It is important to realise that vitiligo is not just a pigmentary problem. It is also a psychological and social one and it can be the cause of quite serious mental issues. So therapies for your mind are every bit as important as therapies for your skin. There are so many different ways you might choose of being “kind to your mind”. I could not possibly list them all here. But here are just a few suggestions to get you started.
Mindfulness meditation
This kind of meditation is easy to learn and beneficial on very many levels. It enables you to achieve total relaxation and a heightened level of awareness, which is both calming and empowering. It has even been proven to cause chemical changes in the brain that combat depression and reduce stress. There are plenty of videos and soundtracks available on YouTube and other sites to teach you how to practise mindfulness. And if the idea of sitting still and meditating with your eyes closed does not appeal, you can still benefit from the general technique by taking a mindful walk. Rambling in the countryside, paddling on the beach and communing with nature can be a form of meditation.
Talking to someone you trust
Sharing your thoughts, feelings and experiences with someone else who understands your situation can be massively helpful. Typically, this is likely be another vitiligo sufferer. But it could equally be anyone who has experienced comparable or equivalent difficulties, or else a close friend or family member. Doing this face-to-face is probably the most helpful way but online conversations can bring really significant benefits too.
Writing your thoughts down
Putting your innermost thoughts into words does not have to involve trusting them with another person. Simply putting them down in writing, for your eyes only, can be tremendously therapeutic. In fact this was one of the prime motivations that prompted me to create TheVitPro.com. I found the act of pouring out my vitiligo story healing and liberating. No one is saying you have to publish your text. You might just want to keep it in a notebook or on your computer. Alternatively, you could burn what you have written afterwards to symbolise your letting go of any negativity. (Only do this if it is on paper – not on your computer!)
Keep a “Gratitude Journal”
There is another kind of writing that can also be wonderfully beneficial: keeping a gratitude journal. I have done this for years and recommend it as a way of focusing the mind on all of the positive things about your life. It helps to achieve a healthy sense of proportion about what is important. Writing down 5 things that you are grateful for on a daily basis can totally revolutionise the way you view the world and your place in it. I dare you to give it a try, even for just a week, to see how powerful the effects can be.
Professional therapy
Seeking professional support may sound scary. But any sense of embarrassment or stigma associated with this belongs well and truly in the last century (or earlier). Today it is perfectly normal to enlist the help of professional therapists for every area of your wellbeing. After all, you have probably been to a doctor about the effects vitiligo has had on your skin at some time in your life. So why would you hesitate to consult a practitioner about the effects it is having on your state of mind? Your psychological wellbeing is just another aspect of your health and there is no sensible excuse for ignoring it.
Talking therapies are more accessible today than they have ever been. And the internet has given us a simple way to research what options are available so that we can decide what types of therapy might suit us best. CBT (Cognitive Behavioural Therapy) is one of the most practical and down to earth of these therapies. Its no nonsense approach can make it an appealing choice for anyone who might otherwise not consider seeking “mental” support of any kind.
4. Self-help: give yourself a vitiligo check-up
You may not feel the need for professional help. But a little self-help can sometimes make a world of difference to both our physical and mental state. Most of us see our dentist or optician on a fairly regular basis for a check-up. Even in our working life most occupations involve reviewing past and present activity. But how often do we conduct a review of our vitiligo? It may never have occurred to you to do this. But what better time to start than on World Vitiligo Day? If you make a habit of putting this activity in your diary every June 25th you will be sure of having at least one vitiligo check-up a year.
Review your progress
What I mean by a vitiligo check-up is setting aside a little time to review your progress. Consider if, and how, your white patches have changed and look back over the various treatments and therapies you have tried in the past. Ask yourself which ones helped and which did not. Life gets so busy that we don’t often stop to look back and assess how these therapies may have affected us in the past. So it can be easy to forget, or completely overlook, important clues that could help us going forward. Keeping a record of these things could save you a lot of time and money going over old ground, as well as helping you stay on track with your most successful protocols.
Visitors to this blog often contact me to share their vitiligo success stories or other experiences. Occasionally they comment that they have suffered a relapse. I usually ask them if they are still doing all the same things they were doing when their vitiligo was improving. Often it turns out that they have either changed, forgotten or relaxed their vitiligo self-care routine. It is perfectly natural to “fall off the wagon” from time to time. Positive progress can lull us into a false sense of security. So conducting a regular review really helps avoid this pitfall.
What to include in your self-help vitiligo check-ups
The areas that I suggest you include every time you review your vitiligo progress are these:
- Have my white patches spread, reduced or stayed the same since my last review?
- What – if anything – have I done, or altered, that might account for any changes?
- What therapies, treatments, lifestyle or dietary changes have I tried in the past and what was the result?
- Am I exposing myself to any potential vitiligo triggers or risk factors?
- What further changes could I make that might have a beneficial impact on my health and my skin?
World Vitiligo Day + 364 other special days
Since the first World Vitiligo Day was observed in 2011 it has become a focal point for action. Campaigners, support organisations and millions of individuals around the globe have rallied to its cause. It has led to some important changes in perception and helped increase awareness. The need for greater understanding and support, further vitiligo research and better treatments has been highlighted. Thanks to WVD, over half a million signatures have so far supported the campaign to have the date recognised and observed officially by the United Nations on an annual basis. (If you have not yet added your name, you can do so on the WVD petition page.
But, as special as June 25th is, it is only one day out of 365. This leaves us all a lot of scope for carrying forward its principles throughout the year. I hope that some part of this article may have given you useful food for thought in that respect. If anything in it has inspired you to make World Vitiligo Day – or any other day of the year – really count, for your own benefit or for the benefit of others, then it will have been worth the read. Please feel free to share your World Vitiligo Day thoughts or activities by commenting below.
