Arooj Aftab, 22, is an influencer who is known for her baggy fashion style. But what her 7,500 Instagram followers don’t know is there’s a big reason she chooses to wear oversized clothes – which she has kept secret until now.
Scroll through my Instagram and it’s full of pictures of me in different outfits.
The one thing you’ll notice is my style is oversized baggy fits. I’ve always loved the look – it’s something that’s quite sporty but also smart.
I’m lucky enough to work in fashion – I look after social media for a modelling agency in Manchester.
But this industry is all about the way you look and sometimes I feel like I can’t always wear what I want.
You’d never catch me wearing something that is tight or figure-hugging.
Instead I end up wearing lots of layers because I am hiding something.
My secret revealed
I have a genetic condition called neurofibromatosis type 1 (NF1) – which causes tumours to grow along my nerves.
When I was born I had a birth mark on my left side and as I grew so did the mark.
I feel like I have one normal side of my body but then on the other side, on my hip, there are tumours.
Some of them feel heavy and the lump feels like it’s heated. Some of the tumours are rock hard but then some are really soft.
They’re not cancerous but sometimes they cause me pain on my joints and my back and the left side of my body throbs.
I wear baggy oversized clothes to hide my tumours – people think that’s just my style but that’s not entirely true.
Social media is full of pictures of people looking perfect. Do I really want to be the person to highlight that I’m not?
My tumours have held me back
The modelling industry is all about looking good and working in this industry you do want to dress well.
But it takes me longer to pick out clothes I want to wear because I’m worried my tumours will show.
Summer is probably the hardest season for me to shop or dress up in because I usually wear layers.
I want to slowly learn to accept my NF and maybe wear fitted clothing and not be ashamed about what I have.
When it comes to dating, my tumours have held me back.
All my friends are in relationships, I try not to think about it but it would be nice to meet someone some day.
I worry though. How do you tell someone you’re dating that you have a genetic condition? When is the right time?
It’s not a small thing, it’s a big deal and it’s going to be with me for the rest of my life.
Meeting Adam
Arooj Aftab met Adam Pearson who also has NF1
Apart from my mum and little sister, I don’t know anyone else who has NF.
For the Newsbeat documentary My Tumour Made Me Trendy, I got to meet Adam Pearson – who also has the condition.
He’s an actor and presenter and appeared in the 2014 film Under the Skin with Scarlett Johansson.
Adam’s tumours are mostly on his face, it also affects his vision and he can’t see out of his left eye.
He told me that he hated school because he was bullied and called names like “Elephant Man”, “freak” and “Quasimodo”.
Meeting him really put things into perspective for me – he can’t hide his NF under baggy clothes like I can.
He’s so inspiring, I mean he’s been in a film with Scarlett Johannsson, which is so cool.
I was blown away by how confident he was and it really inspired me.
The big reveal
Image copyright
Arooj Aftab
I decided that I should embrace my NF and share the fact I had the condition in an Instagram story.
I was absolutely terrified revealing something I’d kept secret for so long.
It was a big deal for me because I’ve never shared my body, let alone my condition, with my followers.
But I received so many messages of support and loads of people shared my story.
Image copyright
Arooj Aftab
I also had a mum contact me to say their daughter has the same condition and I was an inspiration to them.
Afterwards, I felt like a weight had been lifted off my shoulders because it’s something I’ve been so insecure about.
Although I’ve revealed my condition to my followers I don’t know if I’m at the stage where I want to constantly show it with fitted clothes.
But I do feel like people understand why I wear baggy clothes now and I feel like much more of a real person online.
Arooj was speaking to Newsbeat’s Gurvinder Gill.
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