Welcome to the third instalment in my new blog series, How Do I Look? I have used this blog to write about rosacea for the past 6 years and I wanted to open the conversation about skin positivity and visible differences so I can cover (and learn about) lots of different topics. Every week I am going to be talking to an inspirational and interesting person to share their story and experiences to help and support others.
This week I spoke to the amazing Natalie who has had Vitiligo for most of her life – I absolutely love the work that Natalie does online (and in person) to support those with vitiligo and to spread awareness. She’s incredible.
Tell me about your Vitiligo…
“I was officially diagnosed with the skin condition Vitiligo when I was four years old. Its life started as a tiny patch on the back of my hand when I was two years old, however, because it was a relatively unknown condition at the time, it was hard to diagnose me straight away. For those who might not know, Vitiligo is a skin condition where irregular, white patches form on the skin due to a lack of melanin; the pigment that forms in your skin.
Developing Vitiligo at such a young age, meant that I didn’t really understand that there was anything wrong with me until I was around six years old, after I’d started primary school. As a child, I was pretty content. I had a small circle of friends that I trusted and all the kids where I lived knew I had a skin condition because my parents refused to cover it up. As far as they was concerned, there was no reason why people shouldn’t see my skin even if meant I’d be subject to staring and inquisitive questions. It was there way of instilling confidence into me making sure I didn’t grow up feeling as though I should hide it.
I experienced problems with Vitiligo when I entered my teenage years, the time when I became most conscious that I was different. Vitiligo wasn’t something I wanted to talk about, I got embarrassed if the kids in my class caught a glimpse of my skin and felt angry if anyone I didn’t know, tried to ask me any questions. I was a complete closed book and tried to ignore it as best I could. But admittedly, that was incredibly hard.
I started to talk publicly about Vitiligo in 2013, just after my 30th birthday. I was asked to appear on the news channel, London Live, to share my experiences. Initially, I was very hesitant as I didn’t feel ready to share my journey so openly, but something spurred me on and I ended speaking on the channel’s lunchtime news show. It turned out to be one of the best decisions I’d ever made, because after years of hiding my skin, avoiding conversations and allowing it to dictate so many parts of my life, speaking out became the moment when I said to myself ‘I have Vitiligo and I’m okay with it’. Since that moment things have changed drastically…”
What are the common misconceptions, comments, or questions about Vitiligo?
“The most common misconception is that Vitiligo is contagious which really frustrates me because for so long the Vitiligo community has been trying to make people understand that Vitiligo isn’t something you can catch. I personally think it’s a far-fetched assumption but then I guess if you have no idea about the condition, it might be one of the first things you’d want to ask.
Another misconception (or comparison) is that Vitiligo is a form Albinism and whilst Vitiligo and Albinism are both medical conditions where the skin has very little pigment, Albinism is an inherited condition caused by a genetic mutation. Vitiligo, on the other hand is mostly developed at a later stage after birth.
Occasionally I’ve been asked if it’s painful which again is due to a lack of knowledge of the condition.”
What do you wish people knew about Vitiligo?
“I wish people knew that it’s okay to ask questions. One of the things people with Vitiligo often experience is staring which can be uncomfortable and not to mention rude! It would make such a difference if people were to ask us what it was as opposed to simply staring. It’s something most of us would really appreciate. When I get the chance to explain, I really respect the person’s courage to ask and it means I can explain away their curiosity! I completely get that people would prefer to hold back through fear of offending, but staring can be a lot worse, so it’s probably better to ask!”
How does your skin make you feel on a day to day basis?
“I genuinely love my skin! My skin makes me feel empowered, strong and I love that it’s a sign of a journey I have been taking since I was 2 years old. Some may think that’s a bizarre way to think about Vitiligo, but because in recent years I’ve focused heavily on self love and acceptance, it’s really helped me value who I am as a person rather than focusing too much on my outer shell. It has allowed me to realise the importance of putting my own well-being first.
How I feel now is a huge contrast to how I was 8 years ago. Pre-30, I hated my skin and would have given anything to have it erased from my life, just so I could simply fit in with everyone else. It was so hard for others to understand how I was feeling because when you feel like you are the only one that has the condition, it can make you feel so isolated. Now I’ve made so many new friends with Vitiligo and get to connect with people daily, its made living with Vitiligo so much easier and means I know longer despise having it.”
How do you feel about make up or cover up products?
“The discussion around makeup has become such a taboo subject of late, that I’d like to start by saying ‘its okay to wear makeup. It’s a personal choice’. Sometimes when I’ve posted a self tanning post on the Vitiligo Society Instagram page (I manage their social media) the occasional response is that ‘we shouldn’t cover our skin, we should embrace it’. I strongly agree, however I also understand everyone’s journeys and personal situations are different. I wear makeup and I’m not ashamed to admit that. I have very few patches on my face, yet wear makeup daily because it makes me feel good. For me, Vitiligo is most prominent on my arms and legs. I never cover my arms because I’ve never been too fussed about them but I do lightly cover my legs with fake tan. I only ever use gradual tanners or good quality self tanners by quality brands as I like my legs to look as natural as possible. I went through a phase of using specialist makeup products aimed at camouflaging conditions such as mine but they took long to apply. I often had to mix two colours and it felt heavy on my skin, so I stopped. For me, self tanners are easy, quick to apply and do a great job in evening out my skin tone whilst giving a natural, flawless finish.”
What are your thoughts on the media visibility of Vitiligo?
“How Vitiligo has entered the mainstream media of late is incredible! Growing up, I didn’t see anyone with Vitiligo in the media, or any other skin condition for that matter. All the magazines that I read featured models that had perfect skin, shiny hair and were the ‘ideal’ size! You never really saw anyone with acne, eczema, psoriasis or any other skin condition, and when you did, it was often to give advice on how to cure it, rather than embrace it. It left me with a totally warped idea of what beauty was. Things have changed drastically over the past 5 years because of the surge in body positivity movements across social media in particular. Of course, Winnie Harlow who appeared in America’s Next Top Model has essentially put Vitiligo on the map, because before that it was relatively unknown.
Gradually, we have seen brands using models with Vitiligo as part of their campaigns; most notably Gillette, Cover Girl, Vita Liberata (below) and Dove to name but a few which has made such a big impact. It’s overwhelming being part of an era where Vitiligo is getting the exposure it’s getting. It has really helped educate people, raise awareness and publicly show that there are many forms of beauty that should be shown and appreciated.”
How do you deal with bad days?
“I feel really fortunate in that I can say, I very rarely have ‘bad days’ in relation to Vitiligo, but believe me, I’ve had my fair share in the past! How did I deal with them a few years back? By confiding and talking to the people that I trusted: friends and family that would just listen and allow me to rant, as selfish as it sounds. My Mum was great at being that person. She would support me during difficult times and would give me advice as best she could, even though it was hard for her to understand what I was really going through. Talking allowed me to try and make sense of things, even if I knew ‘bad days’ were very much part of my daily life. Support is key to survival.”
If you have consulted the medical community for your vitiligo, how were those experiences?
“Being a Trustee at The Vitiligo Society, means I’m fortunate in that I have close contact with a number of medical professionals within Dermatology. For me, the best advice has generally come from those with the condition. When I decided that I wanted to try UVB Narrowband treatment, I’d spent a number of months questioning whether it was for me. As a form of treatment, it can be time consuming, an interference with day to day life and can last for around 12 months. Also, there is only a 50% chance it will work. Before committing to having the treatment, I remember asking the Facebook community their thoughts, to which I received a really positive response. It was definitely a contributing factor when I decided to approach my GP.
The medical profession are much more aware of Vitiligo these days, however, I do know that many people who are first diagnosed are instantly told ‘there is no cure and to just live with it’, which can be a little insensitive. When I approached my GP about treatment he instantly referred me as my Vitiligo covered way more than 50% of my body. For 12 months I had to go to hospital, twice a week, before work for around 20 minutes. The nurses at the hospital I attended were incredible – very supportive, knowledgeable and they really helped me understand what I was putting my body through. They gave me peace of mind and really prepped me for the 12 months ahead.”
In the past few years there have been more conversations around the link between skin and mental health, what are your thoughts?
“I strongly feel there is a link, especially with the increased pressures in society to look a particular way. Whilst Vitiligo isn’t a condition that heavily affects your health or ability to have an ordinary ‘day to day’ life, it is, however, one of the most psychologically devastating conditions because of its appearance. Naturally, for some this could lead to self-hate, stress, loneliness and in some cases, bullying which can all then be linked back to mental health. In relation to Vitiligo, more needs to be done to help people manage the condition. For many years there has been heavy focus on trying to find a cure, but I also think there needs to be a focus on how to manage Vitiligo mentally through the use of therapies such as CBT. Whilst people are more open to accepting their skin and embracing their uniqueness, there is still a wide community of people that have daily struggles and desperately need therapy related help.”
Have any positives come out of your Vitiligo?
“For me personally, yes, I’ve had an incredible few years. In fact, if I had to explain it in a word, I’d say ‘unexpected’! Sometimes I still have to pinch myself. I’ve shared my story in a number of magazines and blog platforms, have appeared on TV, spoken on BBC Women’s Hour and most recently filmed campaigns for two well known brands. Most rewardingly, I have become a Trustee at The Vitiligo Society, a charity that sits close to my heart and one I have been a member of since I was 5 years old. For me, it’s a great way to connect and hear from the people at the heart of the condition and it touches me when people reach out asking for advice, help or to simply say they feel inspired by my story. I have so much appreciation for anyone that makes contact. As I’ve been on this journey, I find that all these experiences are making me love my skin more.
Recently, I came back from the World Vitiligo Day conference in the US, which was a life changing weekend. I met so many adults and children with Vitiligo that it became overwhelming. I’ve never experienced such warmth, togetherness and community spirit. I have so much to be grateful for and I always feel excited about what I could be doing next!”
Top tips for living with Vitiligo?
“Put yourself first before anyone else. Once I started to do this, I gave off a completely different energy and found I was attracting more positive people into my life. Once you put your emotional well-being and how you feel about you first, you realise that everyone else is secondary and it automatically gives you the freedom to just ‘be you’.
Join online communities and follow those on social media that are advocates of Vitiligo and are open to talking. I’ve found that the Vitiligo community love talking about their skin, swapping stories and experiences. Reach out to them! A few times I’ve got talking to girls with Vitiligo and ended up meeting for a coffee. It really gives you a sense of comfort when you know there are others like you, experiencing something similar. Remember that you are strong. Why? Because you’re here, living with Vitiligo, dealing with the obstacles and the only person you are proving that to, is yourself.”
A huge thank you to the lovely Natalie for talking to me. I love that she has taken a situation that could have had a negative impact on her life and not only turned it into a positive for her, but has used that strength and passion to help and support others through her work with The Vitiligo Society. If you would like to follow Natalie and keep up with her work, you can follow her on Instagram or on her blog.
Read the other posts in my How Do I Look? series here:
- MICHELLE talking about her scars;
- SOFIA talking about her acne;
- SUSIE on her Telogen Effluvium (hair loss);
- AMY on her port wine stain birthmark;
- GEMMA on psoriasis;
- AMARA on eczema;
- GRACE on her scars;
- JUDY on her sensitive skin;
- SHANKAR on his Vitiligo;
- P. on their Acne Conglobata;
- and SOPHIE on her Trichotillomania.
Lex
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