Rosacea can’t be cured – but TikTok disagrees

When Claire*, then in her 30s, started to develop severe redness and pustules in her cheeks, her self-esteem took such a hit that she started to avoid social events. She went to a dermatologist, and initially received a wrong diagnosis of Keratosis pilaris (a harmless condition which causes bumps on the skin), and was given a treatment that only made her skin more red and irritated. “It all felt so hopeless at the time, and made my anxiety worse,” she says.

Claire saw another two derms, both of whom diagnosed her with rosacea. She was advised to take an oral medication with “horrible” side effects and to try various facial treatments. So far, Claire says she has spent over $10,000 (£7,906) on facials and lasers to manage her rosacea. “Some have worked; some haven’t at all,” she says. This included a Co2 laser, which costs £900 a session on average. “That was one of the most painful lasers and recovery I have ever been through,” she recalls. “It just wasn’t showing results – so I stopped.”

Since receiving her diagnosis, Claire has spent hours sifting through advice from beauty influencers – many of whom “are just pushing an agenda to sell products”, she says. She is frequently served ads on Instagram promising to ‘cure’ her skin – mostly pills and cream. “Clickbait rosacea cure posts are incredibly hard to resist, especially when your dermatologist says, ‘It is what it is and you’ll be living with it for the rest of your life,’” she says. “You lose hope real quickly with rosacea.”

Rosacea is a common skin condition, with some reports suggesting that as many as one in ten people have it – a figure that is increasing. It mostly affects the face, and symptoms include facial flushing, facial redness, spots, thickening of skin and eye issues, such as dry eyes or sore eyelids. Despite its prevalence, there’s a dearth of knowledge about the condition, which leaves rosacea sufferers vulnerable to misinformation and stigma. This has allowed ‘skinfluencers’ and other self-professed ‘experts’ to take advantage of patients’ suffering by offering ‘quick-fix cures’ for an incurable condition.

One recently published study found misinformation around rosacea to be rife on platforms like TikTok, Instagram and Twitter. It showed that the most common examples of misinformation included mislabelling of rosacea as adult acne; falsehoods about rosacea only occurring in older adults or in individuals with lightly pigmented skin; incorrect causes of rosacea such as make-up or diet; and misleading ‘cures’, some of which can make the condition worse. 

Lex Gillies, a skin positivity influencer, has spent the last eleven years trying to raise awareness and counteract misinformation around rosacea. As Gilless points out, many people suffering from rosacea are hesitant to talk to friends and family, or to seek a proper diagnosis, “because we’re taught that caring about your appearance is very superficial”. This overlooks the crushing impact rosacea can have on mental health. In surveys by the National Rosacea Society, nearly 90 per cent of rosacea patients said the condition had lowered their self-confidence and self-esteem, meanwhile, 41 per cent reported it had caused them to avoid public contact or cancel social engagements. Among those with severe rosacea, nearly 88 per cent said the disorder had adversely affected their professional interactions, and nearly 51 per cent said they had even missed work because of their condition.

Gilles was diagnosed with rosacea at age 21, when her facial flushes at university started to last for a lot longer. “I thought I was just having an allergic reaction,” she remembers. When she was first diagnosed, Gillies says she had never heard the word rosacea. Now aged 40, Gillies says that like Claire, she was given little guidance from professionals. “The [GP] gave me a cream, which made things worse,” she recalls. “So I stopped using it, but they didn’t really mention much beyond [that cream] what I could do to minimise my rosacea.”

Like Claire, Gillies started to search for answers on online forums. “There was a lot of great information there,” she says. “But looking back there was also a lot of stuff that set my journey back quite far because I didn’t have anyone else to talk to, so I was just blindly trusting what people [online] were telling me.” Gilles’ skin was extremely dry at the time, and she was advised by other people online to exfoliate to “get rid” of the dryness. This only made things much worse: “Looking back now, I just don’t know how my skin survived that,” says Gilles. 

Anyone who has googled ‘rosacea’ will likely have come across advice about which foods to avoid. While it’s widely accepted that diet is a trigger for rosacea, this isn’t true for everyone. On TikTok, however, there are dozens of videos imploring rosacea sufferers to cut out certain foods to ‘heal’ their symptoms. Not only does this create unrealistic expectations – not everyone will benefit from cutting out a type of food – it can, in some instances, lead to a disordered relationship with food. “There are so many emotions associated with rosacea,” says Gillies. “Once you have identified a trigger [such as food], and then you still do that thing, the feeling of guilt afterwards is enormous.”

Dr Shereene Idriss, a board-certified dermatologist, stresses that it’s important for rosacea sufferers to prioritise their mental health. “Is diet a factor in rosacea? Of course it is. Can you drive yourself nuts? Absolutely,” she says. “I don’t want people going down this rabbit hole of ‘What kind of food should I cut out of my life forever?’ and to become miserable in the process.” According to Dr Idriss, it’s about moderation: for some, this may mean less spicy and histamine-rich foods (such as aubergine and aged cheese) and lessening our alcohol intake.

@shereeneidriss Darker skin tones can have rosacea, but you can easily be confusing it with acne. Here’s how to identify it from a dermatologist #rosacea #rosaceacheck #redness #acne #acnetreatment #acneskin #breakout #dermatologist #shereeneidriss #dridriss @ShereeneIdriss ♬ original sound - ShereeneIdriss

Put simply, there’s no ‘one-size-fits-all’ solution for rosacea. “Rule number one is: get to know your skin, because what works for someone might not work for you,” says Dr Idriss. Gillies has compiled a list of the things that have worked for her when it comes to easing symptoms, including her triggers. Still, she strongly recommends that people first seek a diagnosis, and do their own research. “Inevitably a lot of [dealing with rosacea] is trial and error – and that is frustrating,” she says.  

According to Idriss, it’s best to “start from zero” with a basic skincare routine. “You’re looking for lightweight, fragrance-free gel moisturisers [and for] things that are calming, soothing,” she says. “If your blemishes are continuous and you’re actively breaking out or you’re overly producing oil, you might want to add at that point something like azelaic acid, or sulphur to help regulate your oil production and your redness.” 

For Claire, simplifying her skincare routine has led to the most improvements in her skin. “Basically, for me, less is more,” she says. Nowadays, she’s far better at knowing which beauty influencers and TikTok-famous dermatologists to trust. “I’ve done enough research to educate myself on it by now, so I don’t get fooled by anyone.”