When Lex Gillies started blogging, she primarily wrote about nails and nail art; her online persona “Talonted Lex” reflects that original focus. She is now one of the most prominent rosacea social media influencers and patient advocates worldwide. We recently talked with her about her personal rosacea journey.

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 so were most of the women in my family 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, but it was only when I went away to university that my skin began to change. 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.

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 wrote 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 person with rosacea talking about their skin so publicly — people who wanted more advice, who wanted someone else to talk to. I soon realized that rosacea was the topic people were coming to me for, and not nails, so my content shifted accordingly.

What have you learned from creating rosacea content and developing a community for the last 11 years?

I think skin conditions are often trivialized by those who haven’t suffered them, and many of us have internalized 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 — 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 — has been so transformative for me.

How can patients 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. There are many [social media] accounts out there who use manipulation and scaremongering to push you into spending money. The majority of “solutions” 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 things the medical profession has already proved and suggested for years; they just don’t have the sexy marketing.

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.