During Rosacea Awareness Month 2024 we were honored to partner with Lex Gillies, rosacea social media influencer, to provide actionable information for making one's skin care routine an essential part of rosacea management and treatment. Learn more about Lex and her rosacea journey with our Q&A interview below.
Tell us about your IG handle - @talontedlex - and how you got started on social media.
When I first started blogging, I mainly wrote about nails and nail art. I loved beauty but felt so self-conscious about my appearance and felt like nails were a safe topic to focus on. I chose a nail-related pun for my website name and social handles: Talon-ted Lex (as in talons). At least once a week, I consider updating it to better reflect the work I do now, but changing a name you’ve worked hard to build for over a decade is complicated and I fear change!
When were you diagnosed with rosacea and when did you start talking about it online?
I was diagnosed in 2005 when I was 21. Looking back with the knowledge I have now, I think I showed rosacea symptoms for a few years before that but was completely unaware of what they signified. I am pale, with a pink skin tone that flushes easily and is very sensitive, but most of the women in my family were the same so I didn’t think there was anything to worry about. I noticed that my skin would flush and burn when I did certain things (exercise, drink alcohol, if I was too hot or cold) but it was only when I went away to university that my skin began to change: the flushing would be much more intense, more painful, and wouldn’t go down for hours; my cheeks were covered in pustules; and my skin was so dry it would crack and bleed. I assumed it was an allergic reaction so I went to my university GP who immediately diagnosed me with rosacea, a condition I had never heard of. I was given a medicated cream, told that there was no cure, and that was pretty much it. There was no advice about triggers, lifestyle management, or other ways to help my skin. I was devastated and felt completely alone.
Nineteen years ago, the Internet was a very different place to now, so the only support and information I had access to was on forums where other sufferers gathered to share their experiences and recommendations. It was there that I learned about the ways in which I could manage my skin, what to avoid, what to look out for, and where I learned how powerful it is to find others who know exactly how you feel. I didn’t start talking about my rosacea on the Internet until 2013. I would talk about my skin here and there on social media, but everything changed when I posted (what I thought would be) a one-off blog post about my rosacea and the products I used. The reaction to it was huge: I had so many messages from people who had never seen another rosacean talking about their skin so publicly, people who wanted more advice, who wanted someone else to talk to. I soon realised that rosacea was the topic people were coming to me for, and not nails, so my content shifted accordingly. And here we are, 11 years and 3 million-plus blog views later!
How has your rosacea management strategy evolved over time?
I would say that I’m now in maintenance mode when it comes to my skin. I have been through a lot of trial and error (so much error!) over the years: a lot of skincare, testing my triggers, working on my internal feelings about rosacea and my appearance. I used to view rosacea as my enemy; I had so much anger and anxiety and felt a huge amount of loss. My self-esteem took a huge hit in the early years of my diagnosis. But this is what pushes me to do the job that I do. I don’t ever want anyone else to feel as alone, hopeless, and confused as I did when I was first diagnosed. I made a lot of mistakes that I can hopefully prevent others from suffering through by sharing my experiences.
I now have a really good handle on my triggers and I have learned how to avoid the avoidable ones, work around the unavoidable ones, and show myself kindness and understanding if I do have slips. In the past I was so hard on myself if I caused a flare-up by ignoring a known trigger, but that guilt and blame often caused more stress and upset my skin far more than the original trigger. We can’t live our lives in a bubble, and we still need to find joy in life. Rosacea is a small part of who we are and realising this really changed my outlook on living with this condition.
What have you learned from creating rosacea content and talking to thousands of community members for the last 11 years?
The most striking and sad thing for me is the number of people who feel like they are superficial or vain for feeling upset about their skin. The number of people who don’t want to “bother” their doctor, or don’t feel as though they can discuss their needs with their family, friends, or colleagues. I think skin conditions are often trivialised by those who haven’t suffered with them, and many of us have internalised that. If your skin is affecting your day to day life and impacting your mood, you should speak to someone to get some help with that. This is why connecting with others who understand the condition has been so transformative for me. Finding others who understand that some days are harder than others, that sometimes we just feel exhausted, that it can be a burden to continually answer questions or deal with staring. The community that has built up around my social media platforms – and my private Facebook community, Rosacea Club, in particular – has had a huge impact on me.
I always say that my content is 50% aimed at rosaceans who need advice and 50% aimed at the general public who need education. Most people haven’t heard of rosacea, and ignorance can often lead to unkind or thoughtless comments. (“Are you sunburned?” “Are you drunk?” “What happened to your face?”) I use my platforms to not only share content that will help the community in the short term, but to continue to push for representation and awareness to help the community in the long run.
How can folks with rosacea be smart consumers of all the internet and social media content concerning rosacea and related products?
I think with anything we access online, we need to be intelligent consumers. I try to look at everything with a slightly cynical eye. There are many accounts out there who use manipulation and scaremongering to push you into spending money. They prey on our vulnerability, fear, and desperation to make money and it makes me really angry. The majority of “solution” for rosacea are just common knowledge that they’re repackaging and claiming as new: trigger management, gut health, working on stress and the emotional impact, skin care. These are all things that the medical profession has already proved and been suggesting for years, they just don’t have the sexy marketing of some of these online accounts.
Some tips for anyone looking into specific content creators and courses: Do some digging into their backgrounds and their credentials; look at reviews and feedback outside of their own websites and social media, Pay attention to their sources (or lack thereof!) and the claims they are making, and compare them against reputable, trustworthy, science-backed sources (my go-to sources are National Rosacea Society, British Skin Foundation, and British Association of Dermatologists).
What are your tips for living with rosacea, both practical and psychological?
Practical: Trigger management is key. It takes time and can be laborious, which is why a lot of people are intimidated and give up before they even start. But it can not only really help you understand why your skin is acting the way it does, and can also give you a little bit of control back. Not all triggers will apply to each person, so try not to feel overwhelmed when looking at a huge list of potential triggers. I would also recommend finding the basic skin care that can soothe and protect your skin: cleanser, moisturiser and sunscreen are key for improving your skin health.
Psychological: I sound like a broken record, but finding the community and talking with others who truly understand and empathise is the best thing I’ve ever done. Even just the act of scrolling through my social media feeds and seeing other faces who look like mine has been life-changing. Social media can often make us feel even more isolated and “othered” because not only do people only post their highlights, but image editing is rife (even among “normal” people, it’s not just for celebrities!) and therefore we’re often comparing ourselves to someone that doesn’t even exist. By following others with rosacea (as well as other skin conditions), I have found that I am better able to accept my skin. Acceptance doesn’t mean “giving up” or not doing anything to help my rosacea, it just means that I understand that my skin condition is common, it’s a part of me, and I don’t have to feel embarrassed or ashamed of that. I have rosacea and if other people don’t like it, they can tell it to their therapist!
If you could say one thing to someone who was just diagnosed with rosacea, what would it be?
My personal motto is “your skin does not define you, in fact it’s the least interesting thing about you.” You are still exactly the same person underneath your rosacea, you are still just as worthy of love, kindness, and respect as anyone else, your skin does not change that.