Today I posed for photos in my underwear. The world didn’t end. I felt fabulous. And I did it as a part of a book showcasing diverse women from around the world.

I was a bit apprehensive about doing the Underneath We Are Women photoshoot, to be honest. I was not worried about what others would think, or how I looked, but about how I felt.

I rarely go uncovered – and I worried I’d be cold and itchy and sore standing in my undies. I also felt like I should be covered – for modesty and comfort, I guess. What about future employers?!

Fuck it. People put themselves on the Internet with less clothes than I planned to wear.

So Kira, who I just met at the shoot, offered to take me to the house of fashionable lingerie (Big W – it’s all there was with little time!) and I grabbed a cami to go over my bra. I even considered a scarf to wear like a sarong, but couldn’t find one in limited time.

 

But when I took my clothes off, I was far more at ease than I imagined. Photographer Amy Hermann and her Mum, Robyn, were so good at providing a safe and relaxed atmosphere, and talking to the other women waiting to be photographed – who were all as nervous as I was – helped a lot too.

No one apart from Adam and medical staff and occasionally my Mum sees my full body – the scales, the motly redness, the soreness – but today I felt happy enough to let people in. I didn’t do it for self empowerment as much as I did it for others.

Bodies like mine (and I acknowledge I have thin privilege) are stared at and looked away from equally. We are ridiculed and avoided – people are worried they might catch what we have. We are sometimes refused service and employment. We are seen as medical specimens, desexualised and as part of a freak show. We are laughed at, taunted and bullied. We sometimes cover up to make others more comfortable. People tell us they couldn’t handle looking like us, and don’t we want to just look more “normal”?

So it is very important to me that bodies like mine are seen in a non medicalised and non exploitative way. It’s important for other women (and men) with ichthyosis to see themselves in the media, and for those without to see us too. What’s most important, I think, is to allow others to see that we are more than ok with our bodies and appearance, despite society telling us we should fix and and be ashamed of ourselves.

One of the most meaningful messages I’ve received is from a woman with Ichthyosis who is a bit older than me telling I helped her feel more confident wearing summer dresses. I hope other people with Ichthyosis can see these pictures and know they can be happy in their skin. Proud and confident, even.

Of course, you don’t have to strip down to your underwear to get the message across. Just by living life is an act of defiance.

This is me – happy, scaly, silly, curvy, red, strong, not wearing makeup, beautiful, a little bit sexy, and bare. I am defying others’ expectations of how I should feel about my body and how I should present myself. This is about removing the shame and stigma of life with ichthyosis – for me and for others.

Thank you to Amy, Robyn, Finn, Julia, Dom, Dani, Amy, Kira, Renee, Michelle and Kerri for such a wonderful morning.

(A book featuring 100 diverse women will be out next year. I am wearing undies and cami by Jockey and bra from Target – comfort over sultriness all the way!)

Follow Underneath, We Are Women on Facebook and Instagram. These are just snaps taken by Robyn – official pics to come. 

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