How vitiligo makes you feel

Last Updated on 31st October 2023 by Caroline Haye

Your reaction is your own

Unlike many of my other blog posts, this one isn’t about vitiligo tips, research or treatments. So it may not feel as upbeat as most. But bear with me. My aim here is simply to highlight the impact that vitiligo has on real people. And I want to do this by sharing some unvarnished responses to the question: how does vitiligo make you feel?

So I invited a number of my vitiligo contacts to send me their personal thoughts and feelings about having the condition. I wanted to share a selection of comments, from a range of individuals, that would reveal how real people genuinely feel on a daily basis about having vitiligo. Some chose to use a pseudonym for the sake of privacy and so that they could express themselves freely. I did not want anyone to feel they had to present any particular attitude or point of view. (Even within the mutually-supportive space of the vitiligo community, some people can wind up feeling that their response to having vitiligo must be the wrong one.) The point of the exercise was to find out how they really feel, not how they would like to feel or think they ought to feel.

The way vitiligo makes you feel is simply what it is

All the replies I received to my question touched my heart and I related to every one of them. I read some of them with tears in my eyes. And I know that putting their innermost thoughts into words was painful for some. But I hope they also found it cathartic, just as I did when I first told my story on this website. And I hope that reading the comments below will help others with similar thoughts and emotions to feel less alone… Because, in truth, you are anything but alone.

As an added bonus, I would also like to think that one or two medical professionals might stumble on this page. And that they might appreciate that vitiligo is far from being a harmless, cosmetic issue. (Realistically, I doubt that doctors make a habit of reading non-medical blogs like this one. But you never know.)

Most importantly, I want to demonstrate that, for each of us, our response to vitiligo is a very individual thing. Yours may be similar to (or completely at odds with) somebody else’s. But that does not make it any less valid, authentic or profoundly experienced.

So here are just a few of the statements I received, as I could not include them all. But I shall be featuring several others in future posts.

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How vitiligo makes me feel: It hurts from the inside – Karolina, from Denmark

“The thought of vitiligo brings tears to my eyes. I’m having a hard time. I can’t be myself. In less than two months I went from being the smiling, funny, caring person who values spending time with family and friends to being a quiet, worried, hurt, sad, depressed, crying and broken version of myself.

“I’m afraid I’ll never, ever be the same person again. Vitiligo has put an end to my life as it is now. My life doesn’t exist. I don’t want to eat, I don’t want to see people, I don’t want to get up in the morning. Everything has lost its meaning.

“I dread waking up every day and discovering a new spot on my body. Will my disease progress further? How fast? Will the white patches stop developing on my hands? What will I look like in 2 months? What will I look like in a year? Will my face be affected too?… What will my kids say about my white patches when I do have kids? Do I even want to have kids anymore? Do I want to expose my children to vitiligo?

“What if my boyfriend leaves me because of vitiligo? What will my next vacation look like? Do I really have to struggle with my patches for the rest of my life? Will I ever find peace? And will I ever be happy again? Will I ever stop worrying and fearing vitiligo?

“Vitiligo is so painful. It hurts from the inside… My biggest wish right now is to be happy again.”

And an additional comment from Karolina…

“But I also just want to say that, when I’m feeling in control and I do notice some pigment, I feel like it’s reinforcement that I’m on the right track… Boost capsules, diet, greens. I just need to live in the moment of progression, albeit small, and know that my body is responding… And stop fearing that the progress won’t continue or goes again. I need to trust that I can heal and believe.”

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I try to not cover it; I am beautiful as I am! – Karin, from the Netherlands

“When I was a little girl a small spot of white skin appeared on my body. In the following years this grew more and more. I struggled a lot with it in my life, especially when I was younger. But it wasn’t that bad yet and my normal skin still became very tanned.

“I tried a lot of therapies during my life to recover the pigment in the white patches. But it didn’t work for me that well. Especially after the birth of my daughter I became so much whiter than before. My arms were almost pure white, and my legs too. I felt really stressed because of that. But I also made an effort to wear my vitiligo with flair! So I try to not cover it, reminding myself I am beautiful as I am!

“When I was younger I felt much worse about the white spots than now I am older. But it’s still a bit of a struggle because I really take care of my skin with the products from Vitiligo Store. I really try to stop the progress of this disease by taking these supplements. And it works. It takes a lot of patience. But it works.

“If I had a choice of living without the white spots I would definitely choose that. Sometimes I think people make judgements about it but they don’t say anything. I don’t know that for sure. And I don’t really want to know… I don’t know what it would be like for me, living without vitiligo, and I really would prefer that. But, for now, I will try to wear it with flair.”

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I hope one day I get to a place where I am content with how I feel – Joel, from Somerset

“I can vividly remember when the dermatologist told me I had vitiligo 15 years ago. The unknown was daunting to me. No cure, no reassurance that these patches I found were not going to spread. And nobody to relate to about the condition. I can remember crying, driving home, and breaking out into cold sweats over the next few days. I quickly realised that I now had to accept that the way I felt about myself may change and that I needed to find a way to manage it.

“Fast forward to today, and I still have to manage how I feel about myself. Some days are a lot better than others. However, I do think about my skin every day in some capacity. I’m lucky that I have support from my wife, children and extended family, who help reassure me that things aren’t as bad as I may think sometimes. I’m the one who causes this distress on myself: no one else. I haven’t had any negative comments or experiences with vitiligo. And, at times, this makes me realise that things really aren’t as bad as they seem.

“Learning how to manage your thoughts and feelings about having vitiligo is easy to say. However, in practice, I have found it can be a lot harder. I hope one day I get to a place where I am content with how I feel about it. 

“The thing that I have learnt about having vitiligo is that you need to look after your internal system. Moving to a healthier diet and taking the necessary vitamins/minerals to improve gut health has led to some repigmentation. Consistency is key, as is recognising vitiligo triggers.

“I feel positive about the outlook of treatment for vitiligo and hope one day a cure is found.”

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I’m terrified my daughter has it – Linda, from Ireland

“Vitiligo is consuming my life, taking the joy out of so much and now, not only am I focussing on myself, I’m terrified my daughter has it. We had such a good, sunny summer – better than ever. But it was torture for me. My skin dominates everything I do. The constant checking and worry. Not feeling free and wearing what I want. Stomach dropping when I get a glimpse of a patch as I walk by a mirror.

“It’s all consuming. I feel so low. Now I’m scared the medication I’m on will make it worse. I definitely have had some new pigment over the last year, as in some pigment coming back. But I even fear that this will disappear again. Will it continue? How long will it last? Will my body always have this disease? I just want peace and to get on with life, for the sake of my kids more than anything.”

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Pay little attention to the vitiligo and you will find that it reverses quicker – Jasmin, from London

“Like many who suffer with vitiligo, I visited my GP and a few dermatologists for help and they did little to help or reverse my vitiligo. I then stumbled across Caroline’s blogs and I thought I may as well give it a go, so I purchased the Boost capsules, the Five a Day sachets and also the collagen supplements in March 2022. I did not expect anything. However, to my amazement, exactly six weeks after taking the supplements small dots started appearing on every white patch.

“I was advised at the time to also do UVB therapy under the supervision of a doctor three times a week. And I also did change my diet. I limited my sugar intake, decided to go gluten free and increased my vegetable consumption.

“I believe vitiligo is a gut related problem and is also stress related. However, as mentioned before, nothing really worked for me until I used the supplements suggested by Caroline.  All I can say is more and more dots in my patches are appearing as the months go by and some patches have disappeared.

“Some advice for anyone who is thinking about starting the process… It takes time and you need to be patient and trust the process.  You will find that, while some patches easily become pigmented, others need time… Never give up… Things happen for a reason. And, believe me, when you also stay positive and pay little attention to the vitiligo, you will find that it reverses quicker.”

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I’ve never felt comfortable with my vitiligo – 60-year-old male, from Sweden

“I’ve never felt comfortable with my vitiligo, although it has been relatively mild. I have never been able to just put on a pair of shorts on a summer’s day, and run out and play carefree…

“I haven’t really spoken to people about my vitiligo, nor to others who have it. But I have noticed the spots on others, both in real life and on television. I’ve come to understand that there are quite a lot of us who have the condition.

“Today the future seems more hopeful for everyone with vitiligo. Our condition is made visible in different ways. Certain treatments are available, research is conducted, and you can find information on the internet and exchange experiences on several websites. Not least on Caroline’s brilliant blog.”

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More personal perspectives on how vitiligo makes people feel coming soon…

Those were just a few examples of the responses I received. (And, at this point, I would like to thank everyone involved for sharing their innermost thoughts and experiences… And also those who made such kind remarks about the blog and Vitiligo Store. I did not ask for, or expect, these. But I certainly do appreciate them and therefore – somewhat hesitantly and blushingly – included them!)

In addition to these personal accounts, I also received some longer replies which I plan to feature separately. (Otherwise, this would have been a very long post indeed.) So watch this space for more personal perspectives on how having vitiligo makes people feel. And, finally, for now…

How does vitiligo make me feel?

Finally, a brief comment on how I feel about vitiligo myself. Personally, I was never able to embrace it. So I totally understand this perspective, whilst having the utmost respect for opposing views. I think the reason I could not embrace it was that I never felt it was part of who I am. Perhaps, if I had had a birth mark or scar, or maybe even a stable patch of segmental vitiligo, I might have willingly accepted it as part of my identity. Or maybe not. I have no way of knowing.

The point is, I saw vitiligo as a skin disorder that needed fixing. In fact, even now that it actually is virtually unnoticeable, I still realise I could potentially relapse. And I know that I would not be at all comfortable with that. The difference today though is that, if that did happen, I would be in a better position to deal with it than I was the first time around. I would know that vitiligo is not irreversible. So I could make my peace with it (which is not the same thing as embracing it) in the knowledge that, if I could beat it once, I could beat it again.

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What is clear from this exercise is that the way each of us feels about having vitiligo is our own. It may or may not change over time. But the way you feel right now is the way you feel. There is nothing right or wrong about it. It simply is what it is. And, while your perceptions and emotions may alter along the way, no one else can make that happen for you. That said, I do believe that, in sharing our experiences, we are able to help each other. Because knowing we are not alone in how we feel is a comfort in itself. And understanding that there are potentially alternative ways to feel can inspire us to change our perspective for the better – but only when we are ready to do so.

Note: Boost capsules, Five a Day and other products mentioned can be found in Vitiligo Store