‘Finding the Beauty in Abnormality’: My Diagnosis of Marfan Syndrome

By Darcy Maunder

When you’re a child, you don’t think about insecurities. Mainly because, rightly so, you don’t tend to have any. You look at the world through selective lenses, only focussing on what you’re having for lunch or which friends you’re seeing after school. When your scope widens, the insecurities start to creep in.

I was nine when we learned about Marfan Syndrome – big name, I know. It meant as little to me at the time as it probably does to you now. Everything happened faster than we could process it. A routine test ended with my uncle being diagnosed with it and immediately taken in for emergency heart surgery. Once the doctors explained it was hereditary, the string of scans and diagnoses of my family began. Scans became more surgeries and, before the year was over, my mum and grandma had both undergone major heart operations. My cousin, sister and myself were also affected, with varying degrees of severity.

Very quickly, our lives started to change. ‘Connective tissue disorder’ and ‘aortic dissection’ became regular parts of my vocabulary. Needles, MRIs and hospital gowns became our new normal and, by the time I turned eleven, our differences became more noticeable. My sister was lucky, in a way. At a glance, you wouldn’t know there was anything wrong and her heart was by far the least affected. For my cousin and I, it was different.

If you google Marfan, you’ll be greeted by a lot of images of people with the same set of symptoms. Skinny, long limbs, misshapen sternums and often scoliosis. Sure, not being able to put on weight might sound great; but when you’re told everyone at school thinks you’re suffering from anorexia and you’re often too tired to go to school in the first place, it gets old pretty fast.

Everyone seemed to have their own opinion on my body, not that I ever asked. Some days I was lucky, then ugly, 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 helped. I still looked in the mirror and hated what I saw. Someone weak, broken, diseased.

When I turned fourteen, we had our usual scans and the doctor explained that my heart had gotten worse – I needed surgery. After a year of planning and preparing, the day finally arrived. I’d love to say I went through it with resilience and a positive attitude, but the truth is I was bitter and scared and fought against it every step of the way. The days following the procedure all blended together. I slept through most of it, barely aware of the odd pill given or blood sample taken. My family was incredible and, no matter how many tantrums I had, I wasn’t alone for a moment.

A few months later, I was back at school and back to normal… ish. The surgery had left my sternum even more misshapen, not to mention the long, wide scar that now tracked down my chest. I continued my futile search for ways to alter my appearance, now adding cover-up scar makeup to the list of beauty products to my Google list.

If you’ve been a teenager or adult 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.

We often wait for a ‘moment’, I think. Like in the movies, 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 make-up for once. The ones where you stop comparing and tweaking for a second and just be yourself. 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.

Once you get to that point, things start to get 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 they made me look more unusual. I wore low-cut tops that showed my scar and chunky boots that gaped around my ankles. And, even though I shouldn’t have had to, I learned to laugh at the comments people made.

I’ll never look ‘normal’. I’ll always look strange to the people that don’t know me, but, if I didn’t, I wouldn’t look like me. And, for all the good and the bad, I don’t think I’d want to be anyone else. There’s always going to be days where I don’t like how I look, but I won’t waste my time dwelling on it anymore. I’ll look for the things I do like, and find the beauty in abnormality.