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Meet our new Ambassador, Lex

Lex Gillies aka Talonted Lex is a 33 year old blogger from York with rosacea. She started her blog in 2011, sharing her nail art online (hence the name Talon-ted Lex). Since then, she has bravely opened up to the blogging community and her readership about rosacea, sharing her personal experiences with the condition. 

British Skin Foundation spokesperson and Consultant Dermatologist, Dr Anjali Mahto explains…

“Rosacea is a skin condition that most commonly affects individuals aged 30-60 years of age.  It is generally commoner in females and often presents with facial redness; this is usually intermittent at first, but over time can become fixed.  Rosacea tends to affect those with fair skin, blue eyes, or Celtic origin. Rosacea is quite a common condition frequently seen in dermatology clinics. The NHS estimates approximately 1 in every 600 people are diagnosed with rosacea each year in the UK.”

Whilst the physical symptoms of rosacea can be quite obvious, the mental health side of the condition is not always that apparent to others. We’ve been speaking with Lex to see just how much impact rosacea can have on mental health.  

Firstly, when you have a flare up, how does that make you feel? Can it completely ruin your day/week/mood? 

It instantly affects my mood. Physically I feel uncomfortable and hot and my skin can feel itchy and sore; psychologically I feel like my face is a beacon, glowing bright red and attracting stares and judgements from others. I feel self-conscious and like my body is not my own, it’s often a very upsetting and disorientating experience.

Do you ever feel that you can’t wear certain colours/outfits/styles because of your condition and does this have an impact on your identity? 

When I was first diagnosed with rosacea I used to feel like I had to blend in because I didn’t want to give people a reason to look at me. Whereas now I am actually the opposite: I wear the brightest, weirdest, most eye-catching make up to distract people. Instead of wondering if people are staring at my skin, I instead realise they’re staring at my green lipstick! When you have a condition like rosacea, it’s very empowering to choose what makes you stand out… whether that’s red lipstick, a bright piece of clothing, or an eye-catching piece of jewellery.

You were diagnosed with rosacea in 2005. When you first discovered what the condition was, how did you feel? 

I was completely baffled. I had never heard the word rosacea, I had never struggled with bad skin, and I felt completely alone. My GP was quite dismissive. He handed me a cream and made me feel silly and vain for being upset about my changing appearance. I did my own research and started a long road of trial and error to see what would work for me and my skin.

Did you address the mental health side of rosacea from the beginning or did it take time to realise that you needed to consider it? 

I think if I’d had a doctor who was more understanding from the beginning, the mental health aspect would have been less of an issue for me. But as it was, I stopped mentioning how my rosacea made me feel emotionally and mentally as the doctors didn’t seem interested. They wanted physical issues that they could fix. This meant that I struggled with the psychological effects of living with a skin condition along with the shame that came along with that. I was told so many times that ‘it could be worse’ or ‘it’s barely noticeable’ or ‘worrying about it won’t help’. It took many years for me to understand that the way I felt about my skin directly impacted it. Stress and anxiety are my biggest triggers and result in a nasty loop of feeling upset - my skin getting worse - feeling more upset - my skin getting worse. The biggest change in my skin has come from realising that you cannot just treat the outside, you need to care for the inside as well.

When you first realised that there was no definite cure for rosacea and that it was more about managing triggers – including certain food, UV light and stress to name a few – how did you react? Was this a hard realisation? 

I was in complete denial at first. I was at university and the idea of cutting down on alcohol, eating healthily, getting a good night sleep, and minimising stress was laughable to me. I thought that I could carry on the way I was without having to adapt which soon caught up with me. As the condition progressed and as I grew to understand more about my rosacea, I soon realised that I have to constantly barter with my rosacea. I will give it a calm week where I am very well behaved and treat it very well, but then I have a night when I just want a block of cheese and a huge glass of wine and I just have to accept the consequences. Often those consequences don’t seem worth it and I put the cheese back in the drawer, but for me living with everything in moderation is what keeps my skin healthy and brain sane!

Often people who haven’t been affected by skin conditions can sometimes make comments that aren’t necessarily meant to offend, but can hurt. Can you tell us some examples of things people have said to you and how that affected your mental wellbeing? 

I don’t think I’ve ever met someone who said something about my rosacea maliciously, it’s always someone who thinks they’re being funny or it just curious. People ask if I’m sunburned, or drunk, if I’m blushing because I fancy someone or because I’m lying, if I’ve had an allergic reaction, or the evergreen ‘what’s wrong with your face?’ It immediately makes you feel self-conscious, it makes others around you turn to stare and analyse your face, it makes you feel exposed and vulnerable.

How easy is it just to ignore comments from people? Does this take a lot of mental strength? 

I used to try to ignore the comments but now I try to educate people - rosacea is so misunderstood and under diagnosed in this country so the more I can do to raise awareness of what it is and what it looks like the better. Plus it might discourage that person from commenting on another person’s appearance unprompted in future!

How does rosacea affect personal relationships, whether this is romantic, family, professional or social? 

My husband and family are very understanding. They know that I need time to get ready (I don’t leave the house without make up), that I can react badly to extremes of temperature and stress, and can feel incredibly self-conscious and upset about my appearance. I have cancelled meetings and social engagements when my skin has been at its worst because I could not bring myself to leave the house and it’s difficult to explain this to other people.

What would you say to the people who believe that rosacea ‘is only’ a skin condition that ‘isn’t life threatening?’

I have spoken about this topic on my blog and feel very strongly about it. Just because something isn’t life threatening doesn’t mean that it can’t kill you. There have been studies looking into the impact of skin conditions on mental health and quality of life. Any medical condition that makes you feel isolated, depressed, anxious, and in pain is serious and should be treated as such.

Do you have any advice on how to cope for someone who has just learned that they have rosacea? 

The main thing I tell people is that at that point rosacea is in control and that is scary and hard to accept. But you can learn to regain control of your skin once you know what makes it tick. Finding your triggers is the hardest but most important step, so keep a detailed diary, making a note of everything you can think of (diet, skincare, stress levels, sleep, temperature etc) and how your skin felt that day and slowly you will start to notice patterns. Lastly, please remember that your rosacea does not define you. Even though you feel like it is the only thing people might see when they look at you and it’s all you can think about, you are still the same person you were before and your rosacea does not change that.

 

 

 

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