MY STORY

 
 
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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’ve worked in the modelling industry but it 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.

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?

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.

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.

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

Arooj Aftab speaking to Gurvinder Gill at BBC Newsbeat 2018