Own your vitiligo this New Year

Last Updated on 3rd January 2022 by Caroline Haye

New year, new perspective

Thoughts of your vitiligo this New Year may or may not be at the forefront of your mind right now. With 2020 and 2021 firmly (and thankfully) behind us, most of us are still trying to make sense of their world-changing events. The last two years were surreal and frustrating ones for us all, and tragic ones for many. But, on some levels, they helped everyone re-evaluate their lives and refocus on the important things. They even changed the way I think about my vitiligo. On the one hand, the enormity of the pandemic put such relatively minor health issues into perspective. But, on the other, it brought back many of the emotions I remember feeling back when my skin was rapidly losing pigment.

Seeing vitiligo through the lens of a pandemic

The pandemic appeared out of nowhere, or so it felt. Of course, it started silently and invisibly weeks, or even months, before we became aware of it. At first, its insidious spread instilled a vague unease… Which rapidly became an all-pervading sense of unreality and anxiety. It soon became apparent that the virus did not treat everyone equally and that scientists (at first) knew very little about it… A situation that resulted in a general feeling of helplessness, even dread. Its exact origin remains shrouded in mystery. And it has proved complex and hard to treat… All of which reminds me – on a personal level – of the way I used to perceive my vitiligo.

One of the reasons the last twelve months have been so unnerving is because we all felt a complete lack of control in the face of an unseen and apparently indiscriminate enemy… That sense of having the rug pulled from under us, without really understanding who was doing the pulling or what we could do to rectify things, made us wonder if anything would ever be normal again.

Overcoming helplessness

Cases of depression have soared during the pandemic, no doubt largely due to a sense of helplessness. We have all experienced a perceived loss of control over almost every aspect of our lives… A feeling that actually has a lot in common with the psychological effects of having an “incurable” condition. Compared to Coronavirus or any other physically painful or life-threatening disease, vitiligo may seem insignificant. But, for many sufferers, its inexplicable, indiscriminate and unpredictable nature produces similar feelings of helplessness and impending doom… And a similar fear that life may never return to normal.

Happily, a combination of safety protocols and new vaccines promises to overcome the spread of the virus this year, and thereby overcome our feelings of helplessness. And then, maybe, the unnerving experiences of the past twelve months or so will serve to help us view our vitiligo, and any other problems we face, in clearer perspective too. After all, it is only by looking our circumstances directly in the face, and deciding what we can or can’t do about them, that we start to feel in control of them again.

With that in mind, here are some suggestions that may help you to banish any sense of helplessness you feel about your vitiligo…

Own your health

Most of us have no problem taking responsibility for our own general health and well-being. Broadly speaking, we know what risks we should avoid in order to stay fit and well. We know what kinds of diet and exercise we should follow to stay healthy. And we take appropriate action on the occasions when we fall ill. For example, we keep warm and hydrated and get plenty of rest when we have a cold. We go to the dentist if we have toothache. We see our doctor if we suspect we may have a more serious illness. And we call an ambulance if we have a medical emergency.

But, when it comes to long-term conditions like vitiligo, and many others that have no simple remedy, it’s not so easy to decide what to do about it. In fact, we often give up trying to do anything, especially if our initial diagnosis includes words and phrases like “incurable” and “no effective treatments”.

Confront your feelings

This is all well and good if the condition genuinely doesn’t bother you. If that’s the case, then you don’t have a problem that needs solving… and consequently you don’t feel helpless about it. But, if your vitiligo causes you distress and you keep on ignoring or burying that distress without confronting it, then it seems to me that this is a recipe for frustration, depression and a permanent sense of helplessness.

I’m no psychologist, but I’ve had many years to notice this mental process at first hand. For most of my adult life I felt completely helpless (and sometimes even hopeless) in the face of my vitiligo. My initial diagnosis and subsequent lack of treatment options had left me with an enduring sense of powerlessness. And it wasn’t until I finally discovered my feelings were based on perception rather than reality that I started to feel a degree of control over my life returning.

I suppose I have realised that it’s not my doctor’s job to take charge of my health. It’s mine (with qualified medical help, when appropriate, of course). I eventually discovered that learning as much as I could about vitiligo was empowering. Discovering that it isn’t entirely untreatable was a revelation. Trying different therapies for myself (even those that didn’t work for me) gave me new hope. And finding some that actually did reverse my de-pigmentation put me back in control of a situation that I had previously believed was uncontrollable. (I describe this in more detail in a separate post How I Control My Vitiligo.)

So, for me at least, taking responsibility for my health and well-being meant I also had to own my vitiligo because, for too many years, it had owned me.

Owning your vitiligo

Owning your vitiligo means different things to different people. It doesn’t necessarily mean becoming a “vitiligo student” or looking for effective treatments, as I did. It just means accepting the reality of your situation… Not giving in to self-pity or resentment… And, most importantly, not allowing your white patches to control or define you. It means realising that a skin condition is one small part of your life and that you have the power to deal with it in whatever way you decide.

This might mean 1. actively treating it, 2. simply forgetting about it, because you are genuinely okay with that, or 3. positively embracing it, as an increasing number of people today do. There is no right or wrong way to own your vitiligo. But there is probably a best way for you personally. It’s just a question of asking yourself which of these approaches you find the most empowering and then actively following through on that decision.

Cultivating a healthier perspective

Of course, it’s easy to talk about owning your vitiligo. But actually doing it might be another matter entirely… Especially if, like me, you have spent years feeling owned instead of doing the owning. Changing long-held beliefs and perceptions can take a bit of time and effort, even when you know, intellectually, that they were mistaken. It’s all too easy to fall back into familiar thought processes and attitudes. So here are some lessons I wish I had learned a lot earlier in my life and that might help you too, if you ever find yourself struggling to keep a healthy perspective on things.

Be kind to yourself

It’s important to be kind to yourself. Sounds like a platitude doesn’t it? Well, never mind if it is. Give it a try anyway. Instead of being hard on yourself whenever you feel you are losing your grip, imagine instead what comfort and advice you would give a best friend if they were in your shoes. The fact is that it’s often easier to be a true friend to someone else than to ourselves. If you wouldn’t dream of telling your best friend they are ugly for having a skin condition or pathetic for feeling sorry for themselves, why would you say those things to yourself? And if you cherish your friends for all their positive, loveable and unique characteristics, overlooking their little flaws, why wouldn’t you do the same for yourself?

Look after your well-being

If you are a parent or carer (or maybe even if you aren’t) you’ll be used to putting the needs of others first. But it’s also important to look after yourself. You may not be more important than anyone else, but you are no less important either. And having vitiligo may mean you have other health issues or risk factors to consider. (See What Causes Vitiligo? for a list of associated diseases.) So it makes sense to take as much care of your physical well-being as you would if you were looking after a loved one. Realise your mind and body need good food, regular exercise and plenty of sleep. So make sure you get them, without feeling guilty for making them a priority.

Do the things you love

Spend as much time as possible doing what you love. Immersing yourself in your favourite activities is one of the most empowering things imaginable. (More on this topic in Hobbies That Help Your Vitiligo.) Hobbies, sports and other keen interests feed the mind and soul and put you in touch with who you really are. There’s something about being totally absorbed in an activity you love that seems to take you out of yourself and yet, at the same time, make you more authentically you. And, guess what? That person is not defined by the white patches on their skin.

Count your blessings

We all know that being grateful for the good things in our lives helps keep our problems in proportion. But it’s not until you actually count your blessings – i.e. make a list of every single thing you can think of in your life that you are glad about – that you start to appreciate (literally) how much you have to be grateful for. For some people, this practice throws their vitiligo into a more realistic perspective. And for others, it shows them that their vitiligo is, in fact, one of their blessings… Because, whether you love your white patches for making you unique or whether you simply feel that having vitiligo has made you a wiser or more compassionate person, the chances are that you can find something good in it somewhere.

A better year ahead

Twelve short (or not so short) months ago the world was just embarking on an exciting new decade. Well, the first year of that decade turned out to be a bit more exciting than we all bargained for. It was a scary, difficult and tragic year in so many ways. But, if you looked hard enough, there were also things to be grateful for along the way.

Now we are starting another new year and none of us can be sure what it will bring. The only thing we do know is that there will be laughter and tears, hardships and blessings. My wish for us all is that we will spend more time laughing than crying and that our list of blessings will be a long one. And I hope that whatever challenges we face (vitiligo included), we will not meet them with helplessness but with a renewed sense of purpose and perspective… One that empowers us to confront them head-on and emerge triumphant on the other side.

Goodbye 2021 and hello 2022 – bring it on!