‘Don’t feel sorry for me’
Our showcase of the wonderful world that is Truly. This week, meet Vita Bernik, who is living her dreams, despite battling a very rare disease
‘Beauty means feeling good in your own skin’
At one time, most models were willowy, superglam types with cheekbones that could cut glass. Well, not any more. An army of diverse and fascinating – yet just as beautiful – models are now claiming their spot in front of the camera.
And leading that charge is a 22-year-old blogger named Vita Bernik.
Vita explains that she is on a mission to challenge accepted beauty standards.
An incredible feat for a young woman with a rare degenerative disease, who is unable to walk or even breathe by herself. When she was a baby, Vita’s parents noticed that she wasn’t meeting the milestones in the same way as other children her age.
Vita’s mum Petra says, ‘There were some signs when she was 6, 7, 8 months old. She didn’t start to crawl.
‘We went to see the doctor, and then to the specialist.’
After numerous appointments, doctors initially diagnosed Vita, from Slovenia, with spinal muscular atrophy (SMA), a genetic disease which affects the muscles.
In 2017, there was a glimmer of hope when the first-ever treatment for SMA became available.
However, during the initial genetic testing, doctors found that, in fact, Vita didn’t actually have SMA at all.
Since then, doctors have been unable to diagnose Vita properly.
Vita says, ‘My condition is basically that my muscles are getting weaker and weaker, which means that my lungs and legs are also weak.
‘Because of that, I am unable to breathe and walk by myself.’
Vita’s illness caused plenty of insecurities during her teenage years.
‘I lost a lot of weight, which made me more
self-conscious,’ says Vita.
Over the years, various cases of pneumonia made her condition even worse, also damaging Vita’s vocal cords.
And at the age of 21, Vita was forced to begin wearing a BiPAP, a breathing support device, 24/7.
Vita says, ‘At first, it was difficult to accept it – but, in the end, I just asked myself, “Why wouldn’t I accept something that helps me basically live?”’
Cruel online trolls made ‘elephant’ taunts, but Vita had the perfect response, ‘I always say elephants are cute.’
A turning point for Vita came in 2020, when a photographer reached out to her via social media, asking her to model for him.
Since then, Vita has been scooped up by a prestigious modelling agency.
She says, ‘What I like most about photo shoots is the atmosphere, different outfits, make-up.
‘I enjoy everything!
‘I am challenging accepted beauty standards by modelling, and I think that it’s great to have models who are different.
‘I have accepted my body the way it is and I think that difference is beautiful.
‘I say beauty means feeling good in your own skin, no matter how you look, no matter how others think of you.
‘To people who feel sorry for me, I would say, “I don’t, and neither should they.”’
Vita’s mum Petra adds, ‘I’m very proud of her modelling career.
‘She’s a totally different person now, she is very self-confident.
‘She’s finishing school, she’s writing a book, which I’m very proud of.
‘She feels good in her skin.
‘If you feel good in yourself, then
I think it shows it outside, and that’s pretty much what we all want.’