Darcy's Story

Social media can fuel a perception of physical perfection that leaves you struggling with self-image. Darcy hated her Marfan physique, constantly comparing it to the 'accepted ideal', until she realised there was beauty in being different.

by Darcy

If you’ve been on this planet for more than a second, you’ll know that social media is essentially fuel for self-hatred. Be slim, but not skinny. Curvy, but not fat. You get so used to seeing the world’s most stereotypically beautiful people every time you go on your phone that, when you finally stop to look at yourself, you wonder how you could ever compare. This is the same for everyone, but it’s admittedly more difficult when you have a condition that affects your appearance, like Marfan.

If you’re on this website, chances are you either have Marfan or know someone with it. Personally, I was nine when my family and I learned about it. A routine test ended with my uncle being diagnosed and taken in for emergency surgery and, very quickly, our lives began to change. ‘Connective tissue disorder’ and ‘aortic dissection’ became regular parts of our vocabulary, as did explaining to other people what the hell any of that means.

I think for a lot of us, that can be the most difficult part – explaining. And just generally dealing with everyone else’s unwanted opinions. Often, we end up with some kind of reusable script kept in our heads to field the usual questions. It’s a necessary evil, but I try to keep in mind that, as tiresome as it is for me, the more I explain, the more awareness there is.

Unfortunately, the usual script isn’t always enough. Some people are just ignorant. Growing up, everyone seemed to have their own opinion of my body. Some days, I was lucky, then sickly, bony or flat. I tried my best to fit in with how others looked, but no matter how many outfits, diets or exercises I tried, nothing seemed to change.

We often wait for a ‘moment’, I think. Like in a movie, where the main character has some kind of epiphany and, suddenly, everything makes sense. The truth is, there is no one ‘moment’. There are several. Days, weeks, months and years of moments. The ones where you actually like an outfit or the way you’ve done your hair for once. The ones where you stop comparing for a second and just let you be you. The ones where you start to realise that social media is fake; there’s no such thing as the perfect look or the perfect body. Beauty standards change faster than you change your socks, and when it comes to appearances, the only opinion that really matters is yours. It’s cheesy and cliché, I know, but that doesn’t make it any less true.

Once I came to that realisation, things got a lot more fun.

I stopped dressing and acting for the comfort and acceptance of people around me. I wore what I wanted to, without worrying about whether or not it made me look more unusual. I wore low-cut tops that showed my surgery scar and chunky boots that made my ankles look skinnier. And, even though I shouldn’t have had to, I learned to laugh at the comments people made.

I’m not saying I never feel insecure. I do. And there are lots of things I wish I could change. I’ll never look ‘normal’. I’ll always look different to the people who don’t know me, and there’s always going to be days where I look in the mirror and don’t like what I see. But I don’t waste my time dwelling on it anymore. Normal’s boring, and there’s a lot of beauty to be found in 'abnormality'.