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MANAGING THE PSYCHOLOGICAL IMPACT OF VITILIGO

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Managing the psychological impact of vitiligo

 Posted on 23rd April 2021  14 minute read

I developed vitiligo when I was a baby, so I was completely unaware that I had it until I was a little older. The sudden appearance of two penny-size patches of milky white skin – one on my inner anklebone and the other, half way down my spine – puzzled my parents yet didn’t bother me at all.

When I was around seven years old, one of my eyelids turned a pinky-white colour which unsettled me because suddenly it looked as though my lashes had been bleached. I can remember wondering what was happening to me. When my mother took me to see our GP, he told her that I had vitiligo and that it was harmless, which should have been reassuring. But it wasn’t. From that point on, my few white patches were no longer my only vitiligo symptom because I developed a succession of others which I now realise impacted me psychologically and became proof that vitiligo is much more than skin deep.

Not just a harmless skin condition

For generations vitiligo was labelled a “cosmetic” disorder and patients were simply advised not to worry about it. Even today I frequently hear from other vitiligo sufferers who feel their doctor isn’t taking their concerns seriously. Thankfully, times have since changed and the medical profession have recognised that vitiligo is more than just a harmless skin condition. There is awareness of its emotional impact, largely thanks to the combined efforts of vitiligo advocates, charities, researchers and the online vitiligo community.

Increased awareness is bringing about positive changes in the way health professionals and the public see vitiligo, as well as in the way we see ourselves. This change in how vitiligo is perceived has, for some, made living with vitiligo less distressing from a psychological perspective. Some of this is to do with media interest in vitiligo which has made vitiligo more acceptable and eliminated misconceptions such as it being a mysterious “curse” that no one ever talks about (which is what it felt like when I was growing up).

What are the psychological effects of vitiligo?

We all react to having vitiligo in our own particular way. Some individuals manage to focus on the positive aspects. They feel grateful that it is neither physically painful nor life threatening. They look for the beauty in their unique skin formation and some even creatively turn their white patches into body art. But I can imagine that the majority of us have struggled with much darker thoughts at some stage during our journey, whether that be infrequently or on a daily basis.

Drawing on my own experiences and friends with vitiligo that I’ve been in contact with globally, I know that the negative mental effects of vitiligo can range from mild frustration to feeling anxious, lonely and severely depressed. Usually, our emotions are less extreme than this but they tend to cycle through various stages at different times. One participant who carried out research into the psychological burden of vitiligo described the fluctuations in his feelings as being: “grief, fear, grief, anger, grief, and acceptance”, whilst, a teenage girl, admitted to telling herself repeatedly that she was ugly and that she must be a horrible person as the reason why she developed the condition. Maybe you can relate to these stories. I certainly can.

I remember my emotional state was like a pendulum, swinging from high to low and back again in an instant. My entire outlook on life would change, based on some apparently insignificant event (sweating off my self-tan on a hot day) or an innocent question (“I’ve never seen you in the pool – don’t you swim?”). The mental anguish that such moments produced was out of all proportion to the circumstances. But each occasion was another blow to my fragile self-image, almost as if my personality was being eroded along with my skin colour. In fact, I think the dermatologist Dr. Iltefat Hamzavi captured the feeling perfectly when he described vitiligo as “white patches on the skin that affect the soul”.

That said, if your vitiligo causes you emotional distress, then this is an acceptable way to feel. Most of us manage to live a normal life and put on a brave face as far as the rest of the world is concerned. I don’t think that even my nearest and dearest ever really knew the inner turmoil I experienced on a regular basis and I’m guessing I am pretty typical in that respect. We become experts at adopting coping strategies to mask the difficulty in managing vitiligo.

Coping strategies

Personally, I used to hide my white patches under clothing and make-up. Doing this helped me to pretend they didn’t exist. The strategy worked pretty well for half the year. Well enough, in fact, for me to get on with life and almost forget I had a skin condition at all. But, as soon as the warmer weather arrived, my mood would nose-dive because I had to resort to more time-consuming ways of covering up, like using self-tanners or camouflage creams on my arms and legs and searching for garments that were comfortable enough for hot days but still gave me maximum coverage. There was also the hassle of avoiding social situations that might draw attention to my skin, like sun bathing or playing sports.

My greatest dread was that others would notice my blotchy skin and stare or make comments. In fact, as I lost more and more pigment, life became increasingly complicated and stressful. Covering up became harder and more time-consuming – exhausting even. Not only that, but my constant efforts to hide the changes in my appearance were making me increasingly neurotic. I thought about almost every daily decision and activity in terms of how it would affect my ability to conceal my vitiligo. I often felt quite alone and alienated from the rest of the world. It felt as if I was the only person on earth going through this ordeal.

As if these negative emotions were not damaging enough, I can remember also feeling guilty about how I was feeling. I knew there were a lot of people in the world worse off than me and so I felt that I should be thankful for my blessings. But I couldn’t understand why this didn’t make me feel any better. I now realise that understanding why we feel a certain way is an important step to take before we can really start feeling better.

Why does a skin condition like vitiligo cause such psychological distress?

  • Unexpected changes in our appearance are hard to deal with. Knowing what to expect when we look in the mirror is something we take for granted, so seeing an altered reflection is like suddenly entering “the twilight zone”.
  • For any human being, coming to terms with the gradual visual process of ageing is bad enough. But the progressive and unpredictable nature of vitiligo forces us to confront change much faster, sometimes from one day to the next.
  • Our lack of control over these changes can result in fear, panic, anger or a general sense of helplessness.
  • It can also cause anxiety over what strangers may think of how we look, as well as making us feel we need to explain the changes to our friends and family.

We care about how we see ourselves

  • Our skin is our largest organ. It covers our entire body and is something we look at every day. Therefore, we have a strong desire to feel comfortable in our skin, and if we don’t, it can undermine our self-confidence.
  • The colour of our skin is one of the things that makes us who we are. It’s an integral part of our sense of self. It can also be a precious part of our cultural identity, so unexpected changes that we have no control over can chip away at our self-esteem.
  • Vitiligo is in the eye of the beholder which means that the way we see ourselves does not depend on how conspicuous our vitiligo is. In fact, research shows that someone with fair skin and just a few vitiligo patches may feel just as distressed as a person with dark skin and widespread vitiligo.

We care about how others see us

  • As human beings, we tend to judge each other based on first impressions and outward appearance is a key factor in this.
  • Aside from the clothes we wear, our skin is the outer packaging in which we present ourselves to the rest of the world.
  • Fear of what strangers may think of our appearance can make us feel insecure.
  • Certain cultural taboos and stigmas relating to vitiligo may cause embarrassment, social anxiety and depression.

So, how can we deal with the psychological stresses vitiligo can cause?

One of the most effective and obvious ways to eliminate the negative psychological effects of vitiligo would be discovering a cure for the condition. But, given that science is still some way off from achieving this goal, how can we otherwise manage such feelings in the meantime? I’m no psychologist but, as someone who has stumbled my way through life in pursuit of answers to this question, I have found various solutions that worked for me, so I would like to think they could work for you too.

1. Focus on self-acceptance

I have found that a good starting point for dealing with vitiligo in a positive way is to give is to give it recognition and focus on it being a non-threatening skin condition that affects millions of people globally. Self-acceptance can be incredibly liberating. It does not mean you necessarily have to embrace your white patches, as some people do, it just means that you can avoid feelings of anger and resentment.

2. Let go of stress

Letting go of stress should be a natural consequence of accepting your condition, however, it is worth exploring other situations that can lead to stress and trying to minimise where you can. Activities such as meditation, exercise and relaxation can help with reducing stress levels. Not only is this important for your wellbeing, but also for your skin, as stress can often make vitiligo worse and psychologically knowing this can often make some of us feel more stressed.

Personally, I prefer to focus on the healing benefits of de-stressing, rather than how being stressed can make us feel. Looking at it from this angle helps me to see that being kind to myself is not selfish, but rather therapeutic, with the added benefit of making me feel better within myself.

3. Nurture your self-esteem

Taking time to de-stress and being kind to yourself will automatically nurture your sense of self-worth, which may have been affected as a result of your vitiligo. Perhaps you have unconsciously allowed vitiligo to define who you are. Reminding yourself who you are as a person is a good way to restore your self-esteem as you are still the same person you were before you developed vitiligo. Think about your strengths and accomplishments, your talents and passions and think of the people who love and appreciate you for all your special qualities and how you make them feel.

Imagine what you would say to your best friend if they were the one with vitiligo. Would it change how you felt about them? Of course not. Would you want to see their spirits dampened because of their skin? Of course you wouldn’t! So why let vitiligo do that to you? The person you are has nothing to do with your skin and everything to do with your unique and irreplaceable spirit.

4. Reach out to others

I realise now that reaching out to others would have given me a huge psychological boost when I needed it the most. However, during my childhood, teenage years and young adulthood there was no one to reach out to. No one else seemed to have even heard of vitiligo. Even my doctor had dismissed it pretty quickly and whilst my parents were sympathetic, they had no way of knowing how alone it made me feel.

Today it’s a different story. There is no reason for anyone with vitiligo to feel isolated or unsupported. Awareness of the condition has increased massively and there are numerous websites and social media platforms where you can find reliable information, inspiration and a sense of community as well as local vitiligo support groups in many regions. In fact, it has never been so simple to find knowledge, encouragement and mutual support as it is right now.

Reaching out to other people with vitiligo online or in person is a powerful way to deal with your issues and concerns at the same time as helping other people deal with theirs. Getting to know others, asking for their support and offering yours in return is a comforting and enriching experience, not to mention a perfect antidote to self-pity.

No matter how supportive friends and family may be, there are times when only another person with vitiligo can fully appreciate what you are going through. Having said that, if you ever feel you are simply not coping mentally and things are just getting worse, that is the time to ask for professional help. There are a number of highly effective therapies, which come under the umbrella term of psychodermatology, that can enable you to deal positively with the emotional and social impact of vitiligo. 

5. Empower yourself

One of the most disconcerting things about vitiligo is that it can leave you feeling powerless. The first time I heard the word “incurable” it felt as if my life had been hi-jacked. But it finally dawned on me that meekly handing over control of my future to a bunch of militant melanocytes was absurd and once I started to think about it in those terms, I realised that there are hundreds of ways to take back control. Here’s how I’ve done that:

Take back control of your skin

  • Knowledge is power. The more you learn about vitiligo, the better equipped you will feel to deal with it both practically and mentally. Keeping abreast of vitiligo news reminds you there are a lot of good things happening in terms of awareness and research.
  • Vitiligo may not be curable yet, but it is usually treatable. Just knowing what your treatment options is helpful and provides some hope, whether you choose to pursue them or not. Being aware of what lifestyle factors make your vitiligo either better or worse may also enable you to manage the condition better.

Take back control of your life

  • Spending time doing the things you love, for the people you love is surely what quality of life is all about, right?
  • One of the most therapeutic and empowering things you can do, is ask yourself what things do you really appreciate and make sure you do more of those things that make you happy.
  • Life is about running marathons, playing the trumpet, writing poetry, raising kids, baking bread, climbing mountains, starting your own business, rescuing animals, singing in the shower, etc. It’s about putting your whole self into everything you commit to.
  • The person you are and the life you live is defined by what makes you happy and fulfilled and by what you contribute to others. It is certainly not defined by the uniformity (or otherwise) of your skin pigment.

…and lastly….

The notion that vitiligo is a purely cosmetic condition is outdated and completely untrue. So don’t let anyone minimise its impact or tell you how you should feel. Your feelings are your own. Some people take their white spots in their stride and even embrace them as uniquely beautiful. Others find having them more challenging. There is no right or wrong response, but there are some constructive approaches that can help you feel happier and enrich your life in ways that go beyond your skin.

After all, if we value our mental health and quality of life, choosing to cultivate positive ways of dealing with negative feelings just makes sense and it really can be done. I’m not saying that we can wave a magic wand and make everything alright, but I do believe it is possible, with practice, to change our perspective to a much happier one and restore our self-esteem. I believe it is even possible to find the silver lining in our own particular vitiligo cloud.

Of course, vitiligo is not a lifestyle choice. If I could have chosen not to have it, I would. But I also know that I would have missed out on a lot that has enriched my life and those things are so precious to me today that I cannot honestly say I completely regret my mutinous melanin (as I now prefer to think of it).

Fighting my own psychological battles has made me a stronger and kinder person. It has given me a greater compassion for others who are struggling with their own demons, whatever those may be and the experiences and insights that living with vitiligo has given me have created a deeper appreciation of what really matters to me.

I sincerely hope that, wherever you are on your vitiligo journey, you will increasingly notice ways that your experience has enriched you and those you have been into contact with. After all, the things that make a person truly happy, beautiful and self-confident are, like vitiligo itself, so much more than skin deep. They are kindness, humour, creativity, sincerity, individuality: qualities that eclipse our skin altogether. These are the qualities that shine directly from our soul, giving us a sense of fulfilment and adding value to the world around us…..

Links to resources I found useful:

Main photo posed by model and not the author.

About the Author

Caroline Haye

Caroline Haye has had vitiligo almost all her life. Having lost approximately 80% of her skin colour by the age of 50, she had lost hope of ever regaining pigment in her skin. However, over a period of approximately 18 months, Caroline unexpectedly experienced near total re-pigmentation.

This experience was so thrilling and so contrary to everything she had ever been told about vitiligo, that it prompted her to learn as much as she could about the condition with the aim of sharing what she would learn.

As founder of The Vit Pro blog and Vitiligo Store, Caroline is passionate about passing on a message of hope to others affected by vitiligo. Much of her time is spent reading literature on vitiligo, sharing what she learns and encouraging others, something she wished she could have had when she was younger.

Caroline Haye has had vitiligo almost all her life. Having lost approximately 80% of her skin colour by the age of 50, she had lost hope of ever regaining pigment in her skin. However, over a period of approximately 18 months, Caroline unexpectedly experienced near total re-pigmentation.

This experience was so thrilling and so contrary to everything she had ever been told about vitiligo, that it prompted her to learn as much as she could about the condition with the aim of sharing what she would learn.

As founder of The Vit Pro blog and Vitiligo Store, Caroline is passionate about passing on a message of hope to others affected by vitiligo. Much of her time is spent reading literature on vitiligo, sharing what she learns and encouraging others, something she wished she could have had when she was younger.