‘I could have been paralysed forever’: What it’s like living with the syndrome Justin Bieber has

In the now-viral video, the star tries to smile with the right side of his face completely frozen

For most people, the first time they hear about Ramsay Hunt syndrome is when they find out they have it. It’s incredibly rare, affecting around 5 in 100,000 people in America a year. There aren't any accurate figures for the UK because it's so commonly misdiagnosed - the syndrome doesn't even have its own NHS webpage. This is why it normally takes a doctor’s diagnosis for sufferers to know what Ramsay Hunt syndrome even is. Until this week, where millions of people learned about it through social media after pop star Justin Bieber posted an emotional video announcing he was suffering from it. “The amount of people who messaged me saying about Justin Bieber… was wild,” says Michael, 35, a composer living in Manchester, who was diagnosed with Ramsay Hunt syndrome just over a year ago. “My illness came completely out of nowhere”, he explains. “I was on FaceTime to my friend and the right side of my face felt strange, that’s the only way I can describe it. I was looking in the mirror, raising my eyebrows, and both would go up, but then the right-hand side would fall down.”  Michael, who lives in Manchester, called 111 immediately and explained his symptoms. Operators suspected a stroke and called back to let him know they’d be sending help. “But I’d gone to bed!” he laughs. “So I woke up at 3am to an ambulance outside my door.” https://www.instagram.com/p/CeqP38Qji00/ As it turns out, it wasn’t a stroke, and he was instead diagnosed with Ramsay Hunt. According to the NHS, the syndrome is caused “by a virus in the facial nerve” and is “a more severe cause of facial paralysis.” In the now-viral video shared by Bieber, he illustrates this paralysis, trying to blink and smile with the right side of his face completely frozen. “It’s pretty serious, as you can see,” the star says. The syndrome is normally caused by the same virus that causes chickenpox and shingles. For 31-year-old Brent, the case of shingles was so extremely painful he had to be admitted to hospital, where he found out it had developed into Ramsay Hunt syndrome. “Apparently if I wasn't admitted to the hospital by that time, my face would have been paralysed, and my nerves would probably have been severely damaged,” he says. “Timing is key.” [caption id="attachment_342072" align="alignnone" width="2048"] Brent’s shingles rash was so bad he was admitted to hospital, where he was medicated and it cleared up within days[/caption] Luckily, Brent’s Ramsay Hunt symptoms were caught early enough and many have been reversed. “All my facial muscles are working properly and thank god,” he exclaims, “because if those drugs had been given to me later it could have been much worse.” Michael’s journey to regaining his facial muscles has been a more uphill battle. “I’m only about 50 per cent recovered,” he explains. “My forehead doesn’t move at all and my smile is still very lopsided, especially if I do a big cheesy grin.” Michael also struggled with his speech for a while: “Well, the right side of my face was completely immobile, so words with p’s and b’s went out the window, I couldn’t say the word ‘up’, I couldn’t whistle, I still can’t.” He can't eat big burgers or sandwiches anymore, "because my mouth just doesn't open enough, I'd bite my own lip if I did it" he says. Michael and Brent both hold an unusual gratitude for the pandemic, which is when they were diagnosed, because it cushioned the blow of reentering social situations. “That was the positive side of Covid for me, I didn’t have to explain to everyone what Ramsay Hunt was all the time,” Brent says.  But restrictions couldn’t last forever, and eventually people started emerging from their homes and casting aside their masks. Face-to-face was back in fashion, which is a lot more daunting when you’ve not fully recovered from a facial paralysis syndrome. Michael is a composer, which means his return to work involved a lot of interacting with people. “You can tell my face is lopsided,” says Michael, “but I guess there’s that politeness to adults - they don’t want to say something.” Children, however, are not as tactful. “I do a lot of composing projects in schools and young people will say ‘What’s wrong with your eye?’ or ‘What happened to your face?’ and it’s in those moments you realise ‘Oh, perhaps it’s more noticeable than I thought.’” [caption id="attachment_342074" align="alignnone" width="2048"] Michael pre-RHS and a few months post-diagnosis[/caption] Brent says he sympathises with Justin Bieber for this reason, because his profession is so public-facing. “I feel so sorry for him because he’s a celebrity and he needs those muscles more than the rest of us - he can’t even blink his [right] eye, which is crucial, because it means that eye can just dry up.” Michael was "unfussed" by Justin Bieber before but now respects him following his openness about suffering from Ramsay Hunt syndrome.  You’d think the syndrome would make dating life harder to navigate, what with having to get used to your entirely new face, but both Michael and Brent are in happy relationships. “I was actually single when Ramsay Hunt struck me”, says Michael, “then about six months in I met someone and we’re still together. Being with someone who still finds me attractive regardless of what’s happened to me… that I’ve found really positive.” He feels that sometimes people do notice and do care, "but that's their problem." While it may not require mandatory isolation or reduced social interaction like Covid once did, Ramsay Hunt can be extremely isolating in its own way. What Justin Bieber has done, Michael says, is strip that back - he’s made people feel less alone. “I feel like we have an advocate now,” he shares. “We have someone who’s experienced what we’ve experienced. Like, that’s your face - that’s what people see before they’ve even spoken to you, so to have that taken away from you is really challenging.”