One parent’s response to her child’s vitiligo

Last Updated on 18th February 2023 by Caroline Haye

A personal journey of determination and faith

I have featured a number of personal vitiligo stories over recent months, all of them expressed from the viewpoint of the vitiligo sufferers themselves. But, as with many chronic health conditions, vitiligo can have a significant impact, not just on the individuals themselves, but on friends and family members too. (This is sometimes referred to as The Greater Patient concept.) And none more so than parents. So later on in this post, with her kind permission, I will be sharing one parent’s response to her child’s vitiligo, as described in her own words. I’m sure you will find her emotional and spiritual journey as inspiring as I do.

But first… what are the pressures on parents whose kids have vitiligo?

Coming to terms with your own vitiligo diagnosis is hard enough for most of us. But when the diagnosis is for a child (who is probably still too young to fully understand what that means), the emotional and practical repercussions tend to hit parents the hardest. After all, the parental instinct is to spare your child suffering and to make everything okay.

But how do you make everything okay when you have been told your child has an incurable skin condition and that there is every chance it will spread? How do you cope with the prospect that your child might develop a poor self-image, be bullied at school or be unhappy, or even disadvantaged, in their future life? And how do you decide what treatments you should choose for your child? I don’t have children myself but I can vividly imagine that these are the sorts of questions that must dominate your thoughts.

Not to mention the (totally unwarranted but involuntary) sense of guilt that some parents tell me they feel. Unreasonable and harsh as it may be, some parents blame themselves, believing they passed on the “vitiligo gene” to their kids. And if they don’t have a misplaced sense of guilt about that, some just feel that there should have been something they could have done to prevent this happening to their child. None of those feeling are justified, of course, but they do seem to be quite common.

We all cope with life’s challenges differently

Unforeseen health issues have a way of focussing the mind. You find yourself thinking less about the trivial day-to-day things and more about what really matters in life. Of course, everyone has their own style of dealing with these bumps in the road. So every parent will have a different way of helping their child deal with them too. Some are pragmatic, others have a more emotional response. And, for some, the experience brings their faith to the fore.

Two people in exactly the same situation might react completely differently. After all, we each have individual ways of processing information and coping with life’s challenges. And we all have different personalities, experiences and world views… Which, for me, is why each vitiligo story I hear brings something new to my understanding of this condition, how it impacts people and, most importantly, how each one of us can win our own victories over it.

The story I am about to share is a fitting example of this. (In fact, the name of the wonderful woman from California who sent it to me actually means “victorious” or “never give up”.) Here, in her own words, is an insight into Jaya’s emotional and spiritual journey in the days and weeks following her young son’s vitiligo diagnosis.

Jaya’s journey from “Why him?” to “Let’s transform this for all kids”

“I am a Nicherin Buddhist and my practice teaches me all about taking responsibility for your own life and circumstances. There is a saying in my faith which goes, Illness gives rise to the resolve to attain the way. And in August 2022, faced with the possibility that one of my kids may have an autoimmune disorder, this saying became very relevant.

“His vitiligo diagnosis felt as if someone had thrown me into the deep end of a pool and I was struggling to find my footing. In fact, more like I had been thrown into the ocean with turbulent weather, thunderstorms and cracking rain… And I was desperately seeking to become dry, breathe and possibly see some sun. This scenario was so vivid for me that it filled me with feelings of pure anguish.

The power of prayer and appreciation

“I believe in the power of prayer. But no words and no guidance were helping me at that time. I would wake up with a sense of doom as if I had gotten life imprisonment. The two words which had never before crossed my mind in twelve years of practice – ”why me?” (or “why him?”) – seemed to be a constant line of thought. But the one feeling that kept me going was that I had to keep praying. There was no other way, and giving up was just not an option… Even though, to be honest, it did feel robotic, as if I was just going through the motions. I felt immune to all the positive exhortations of my faith.

“But this is when some important realisations began to dawn on me. For example, each and every day and moment is precious… And, if you think you have scaled one mountain, you have no idea of how many more you may have to scale. This was very significant for me, because I realised that somehow, in assuming that just because I have scaled one mountain, it’s a done deal, I was being arrogant in my overconfidence.

“Another realisation was the power of appreciation. Appreciate, appreciate, appreciate and appreciate everything… Sounds weird, but this lesson really came home to me.

“I recognised that it’s so easy to slip into a whole gamut of expectations. I would say this is the one truth that is helping me the most to transform my mindset… Towards my spirituality (in my case, my Buddhahood, the centre of my life) and not towards my problem… To really believe in the power that lies within me and in others… Which leads me to the next most important lesson I needed to learn…

“Master your mind or your mind makes a monkey out of you.”

“Oh my! This is my biggest weakness. In a short span of time I had imagined the worst case scenario possible. And this had triggered another bout of extreme anxiety… Anxiety over anticipating something that may never even occur.

“But gradually, as I kept persisting in my spiritual practice, I started to see a little bit of light… Light in terms of seeing a shift in my attitude. From thinking and giving myself a sentence of doom to determining that each moment would be even more precious. The sinking feeling in my heart started getting better…and I started seeing sparks of hope, support from the universe in the smallest of things and at these moments my heart would sing a song of joy.

“I started setting myself very strong goals with specific dates…Today, as I write this, I feel very, very determined to turn this around. I don’t have the foggiest of ideas how this will manifest. But I am a believer in the mystic law that states, When your determination changes, everything will begin to move in the direction you desire.

My heart goes out to all who are suffering from this condition

“I hope that, in sharing my own mental and spiritual response to this situation, I can help another parent struggling to cope just like I have done. My heart goes out to all who are suffering from this condition and I feel more determined than ever to deepen my prayers about finding a cure.

“At first, I kept asking, Why him? But now, instead of asking this, I am beginning to feel, Sure, it’s what it is, so let’s transform it. Somewhere down the line I found myself looking for other kids with this skin disorder, somehow hoping we could commiserate with each other. But then I was like…Nooo..don’t want to see any child with it. So I know that my prayers should encompass ALL kids, not just mine.”

Latest update on Jaya and her son

Since she sent me her comments, I’m happy to report that Jaya’s proactive attitude, and her belief in personal responsibility and the power of faith, has been paying off. Just a few days ago she emailed me to say that, thanks to an unexpected cancellation, she was able to get her son an appointment with a sought-after vitiligo expert a full three months early.

She says, “I see this specialist’s name quoted on many articles on vitiligo so I feel very assured that my son is in good hands. Besides, the nursing team where he gets his phototherapy is beyond phenomenal. They have been so accommodating with the slight delays we run into as I try my best not to let my son miss important school stuff, etc.

So, all in all, I have a lot of gratitude at the way things are progressing. To a believer, every drop feels like an ocean and I think that is where I am now. I mourned enough and now am super determined to help my son, and others too.”