From the first moment a person notices a strange white patch appear somewhere on their skin, they start – whether they realise it or not – to develop coping strategies. There is no right or wrong way to #cope-with-vitiligo. After all, we are all different and different approaches work for different people. But it is worth being aware that some approaches are constructive whilst others may be self-destructive and counterproductive. Which of the following do you use?
1. Ignore it and hope it will go away
This is often our first reaction to seeing changes in our skin. We hope it is just one of those things – like a rash or a fungal infection and we imagine that it will clear up on its own. When we realise this is not going to happen we visit our doctor, full of confidence that a prescription for some cream or a course of tablets will sort us out. It is usually at this point that we receive a diagnosis of vitiligo, along with the customary uplifting talk (you know the one - “incurable… tough luck… just be glad it’s not cancer", etc.,etc.).
2. Cover it up and try not to think about it
This strategy differs slightly from the first one because it involves a conscious effort to hide the condition from others (and even from oneself too). If you can hide it well enough under clothing, makeup and camouflage no one will notice and you won't have to think about it either (just as long as you avoid mirrors every time you remove your disguise).
3. Keep clam and address the problem
Most non-life-threatening skin complaints are relatively simple to treat. So it is not unreasonable for our first reaction to be to visit our doctor, see a dermatologist, try our local pharmacist, health food shop, herbalist or alternative therapist or simply to reach for the medicine cabinet in our attempt to solve the problem. However, the absence of any significant help from these sources usually brings us to the realisation that, if we are going to find any real solutions, we are going to have to take charge of our vitiligo ourselves.
4. Give way to panic and despair
You know you are doing this when you find yourself checking the mirror every hour or so, looking for new lesions or wondering if the ones you spotted earlier were just a trick of the light. You alternate between crying, praying and bargaining with God: you promise never to complain about anything else ever again and to devote the rest of your life to doing good deeds if only you can wake up tomorrow morning to find your normal, even skin tone has been restored to you. You can think of little else other than your skin; you obsess over the size and number of lesions you find each day and you look at other people walking around with their perfect complexions and ask "why me?"
Our instinct for self-preservation is very strong, so it takes a lot to cause a person to want to harm themselves. But a condition like vitiligo, which can totally undermine our sense of security, confidence, even our sense of identity, is sometimes so overwhelming that it can lead to self-destructive behaviour like substance abuse or socially harmful behaviour like pushing away friends and family. This goes way beyond the occasional bout of self-pity and is something that may need professional help. There is no shame whatsoever in this and I would urge anyone who is feeling overwhelmed (like the lady who emailed me recently and admitted to suicidal feelings) to find a professional to talk to about it before things go any further.
6. Scour the internet for cures
By the time the internet had become the obvious go-to destination for the answers to all of life's questions, my vitiligo had all but gone. But I know that the first thing most people today do on receiving a diagnosis of vitiligo is go online. Spending hours on end, searching the internet for answers, trying out every remedy going and learning everything you can about the condition is, on the whole, a wonderful opportunity that was not available to previous generations of vitiligo sufferers and I am a big advocate. But, as with anything else, it is a two-edged sword that needs to be approached with common sense and moderation if you are to avoid becoming totally obsessed or, worse, falling prey to unscrupulous charlatans.
7. Embrace your vitiligo
This attitude has become much more prevalent since social media gave people around the world a way of sharing their experiences and photos and since awareness of vitiligo has increased (albeit from practically zero to just above barely visible). As coping strategies go, it is a very positive one. But, since it requires the individual to be completely open about their pigment loss and expose themselves to the scrutiny and curiosity of others, it is not for the faint-hearted. If this approach is not for you, you should not feel guilty about that. No one can tell you how you should deal with your vitiligo. Not everyone is able to embrace theirs. It only works for some but, when it does, it is certainly very inspiring to the rest of us and helps to raise awareness further.
8. Turn it into something creative
Some people are able to go one step further than simply embracing their vitiligo. They decide that, since life has handed them a lemon, they will make lemonade. #Winnie Harlow has built a highly successful modelling career around her vitiligo. #Kartiki Bhatnagar turned her vitiligo patches into beautiful art, #Keira Walcott created her own makeup range and broadcaster #Lee Thomas became a prominent vitiligo ambassador, author and motivational speaker. And these are just a few of the individuals who have turned their skin condition to inspirational advantage.
9. Draw strength from others
Drawing strength from others can be a powerful and mutually satisfying way of coping with any difficult situation. Whether our inspiration and support comes from celebrated individuals like those above, from "ordinary" vitiligo friends we encounter on forums or at meetings or from our network of family and friends, the love, acceptance, wisdom and humour of others is sometimes the best medicine we could ask for.
10. Give strength to others
This is often a natural consequence of the previous strategy and, in my experience, is even more powerful. When we look to others for help and support, we find ourselves sharing our own experiences, feelings and life lessons too and so the benefits flow both ways. Not only that, but I believe that the greatest hidden benefit of having to cope with a challenging condition is that it increases our appreciation, compassion and understanding of others. I used to think that people who claim it is better to give than to receive must be either hypocrites or saints. But now I think they just have a better understanding of how human beings work than I did.
It’s clear to see which of the above strategies are constructive and which are the opposite. And it is equally clear that adopting a constructive strategy (or maybe several) is the wise choice. But for many people living with vitiligo the psychological distress of seeing their skin colour disappearing before their eyes, and dealing with all of the consequences of this, is so severe that arriving at that choice does not come at all easily. For them, adopting a positive coping strategy is not a one-time decision: it is a journey that has its highs and lows and takes as long as it takes. It can feel like a solitary journey but I hope that everyone reading this now realises it does not have to be made alone.
My name is Caroline.