Rosacea is a common but misunderstood condition thought to affect millions. It is incurable, and those who have it often need ongoing treatment, restrictions on what they eat, drink, and do, and in some cases endure judgment or taunts from others. But a growing community and testimonies from high-profile sufferers have shown they are not alone.
Lex Gillies of York was a 21-year-old college student when she was diagnosed with rosacea.
“I didn’t want to do anything that would make people turn and look at me because I didn’t want people to notice my skin,” she says.
The skin condition characterized by facial redness caused by dilated blood vessels with small bumps and spots, similar to acne, is common.
Some reports suggest that up to one in ten people in the UK suffer from it.
Controlling your appearance through treatment and managing triggers like alcohol, spicy food, exercise, and even the sun is one thing. Managing the mental health impact is another.
Lex, a blogger and ambassador for the British Skin Foundation, has spent eight years documenting her relationship with rosacea and says she’s learned to understand and accept her skin for what it is, rather than “as my enemy ” to treat.
“I had seen my rosacea as something to fight and overcome, and felt like my skin was failing me and was a traitor by allowing it to take control,” she says.
“But actually, it was my skin that was desperately trying to alert me that something was wrong.”
She has written extensively about the impact rosacea can have on people’s mental health, saying, “It’s still not something that’s being taken seriously.”
Her stance made her an unlikely ally – if not for political reasons – of MP Sir Edward Leigh, who suffers from rosacea and recently spoke out about the abuse he suffers as a result.
He complained about being called a “red hamhead” and a “defiant buffoon”.
Gainsborough MP Sir Edward, who brought up the abuse during a debate at Westminster Hall in January, said he had learned to take comments about it “with a pinch of salt” but said he was concerned about the impact on it younger generations and the support available to them.
On this point, Lex agrees, and while Sir Edward has been criticized for some of his political views, including recent comments about Ukrainian refugees, she says his appearance should not be a cause for ridicule.
she has previously pointed out how a “cruel jibe on one MP” backfires on others who “take these jokes to heart”.
Janet Doyle, 71, of Hull, was diagnosed with the condition in her 30s and says she has a hard time going outside some days.
“At the end of the day, it’s your face. It’s what people see first,” she said.
“People think you’re a drunk. You just feel awful, what’s the point? It can be really depressing. Sometimes I think about not walking out the door.”
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Jim Howe, 64, of Skegness, said he’s also found it hard to deal with the unwanted attention his looks can draw.
He described sitting outside a bar in Spain when a friend turned to him and said: “Your face is like an alcoholic”.
“People judge you when you have rosacea, and that can be pretty depressing,” he said.
Nicola Dalby, from Ayrshire, said she first noticed the condition, which affects her cheeks, nose and forehead, as a teenager and battled at times because she feared she would never “grow out of the horrible skin”.
However, she found solace and support in speaking to others online.
She describes a Facebook community of which she is a part as a “lifeline” for her in recent years, one that has given her the opportunity to share experiences and share advice, and most importantly helped her to realize that she is not “alone “ was.
Access to professional psychological support for people with skin conditions is a “significant problem” with large gaps in coverage in certain parts of the UK, according to the British Association of Dermatologists.
There is “a large body of evidence” showing the impact it can have on a person’s mental health and quality of life.
UK charity Changing Faces provides support for anyone living with a scar, mark or condition on their face or body.
Executive Director Heather Blake says that too often people’s mental health is left unaddressed, with the focus being on the physical effects of the condition.
She says the charity can offer support for those who may be considering cosmetic procedures and will also offer advice to those battling the psychological effects
“We believe that people have the right to choose how they live their lives with a visible difference,” she says.
“Our job is to refer people to the right support.
“And while people with visible differences, like rosacea, continue to face stares, negative comments and worse, we will remain committed to challenging the discrimination people face based on their appearance.”
After Sir Edward expressed his concerns about the supply, Health Secretary Gillian Keegan said in January the Government was “firmly committed to achieving parity between mental and mental health services”.
For Lex, she says she’s no longer at war with her skin after 16 years with the disease, but acknowledges that “many people are too early in their journey to understand or yet accept it.”
“My mantra is that your skin doesn’t define you. It’s something you have to nurture, but that’s not who you are. You have rosacea, but you are not rosacea.”
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