"The kids at school told me I'd never have sex, never mind get married."

By CARLY FINDLAY

So I read an article on Mamamia titled “I don’t care about your wedding”. The writer just didn’t want to know about her bride friends’ flower arrangements or makeup plans.

I am not a bridezilla, but I don’t care who knows how excited I am to get married. As soon as my partner popped the question, I was pinning dresses and bouquets on Pinterest, obsessively buying bridal magazines and happily oversharing wedding plans with anyone who’ll listen (the girl who sits next to me at work is probably more excited about my wedding planning than I am!)

Why?

I never thought I’d get married. Never thought I’d be loved or love as much as right now. Kids at school told me they were not going to talk about sex around me because I’d never have sex.

Because I have a lifelong skin genetic skin condition called ichthyosis form erythroderma. It means scaly red skin. I was born with it and it will probably never be cured.

But now, I can’t wait to be a bride. I feel most comfortable in my own skin now, more than ever before. I own my difference. When choosing my wedding dress, I didn’t worry about how much skin was exposed, or if I’d be cold. I will accessorise later. My dress is more bride-y than I ever imagined.

But in my peripheral vision – my sixth sense for peoples’ reaction to the different – I see surprised reactions. Brains ticking over thinking about how a relationship with the other works.

Writer Lindy West says she can’t “wait to be a fat bride”. She writes of how people are surprised she’s a fiancé, assuming he’s her roommate, and laments that she didn’t see TV shows featuring fat women in relationships. She never thought she’d get married. I wanted to high-five her through the screen. Her words hit home.

Lindy wrote:

“But when I think back on my teenage self, what I really needed to hear wasn’t that someone might love me one day if I lost enough weight to qualify as human – it was that I was worthy of love now, just as I was. So I’ll be fat on my wedding day. Because being fat and happy and in love in public is still a radical act. Attention, every fat teenager on earth: you’re invited.”

Blogger Lindy West

Replace Lindy’s references to her size with my skin and that’s me.

I’ve noticed an element of surprise about my relationship. For a few months I awkwardly called Adam my boyfriend, worried what people would think. And then I hesitated when I mentioned my fiancé, because I didn’t want people to wonder about our sex life (because that’s often a common question directed to people with disabilities – and I’ve been asked about whether Ichthyosis affects sex by a number of strangers). Also, I couldn’t quite believe the fiancé thing myself so it took a lot of getting used to.

But. I was recently asked to do some mystery shopping as a diversity awareness exercise for a friend – a store manager. The first thing I asked was whether the store had a bridal registry. The sales assistant looked me in the eye and said yes they do, and explained how it works. They passed my awareness test. The sales assistant looked me in the eye and didn’t flinch when I mentioned I am getting married. A pleasant experience!

My test may seem unfair, a little baity, if you will. But the reality in looking different, in having a disability, are the low expectations of finding love (the self imposed and those imposed upon us). Even doctors have preempted my request for a Pap smear with “you’ve never been sexually active, have you?”, assuming asexuality, or virgin status, or how could anyone love me at all?

My Mum tells me that when she mentions I’m engaged to a beautiful man, people are surprised. Some people ask her if he’s got ichthyosis too, waving their hands around their face in the international language of ‘I’m not sure how to describe the skin condition’. Not that there’s anything wrong with me dating someone with Ichthyosis. But there is an assumption that we’ll seek similar. It’s so othering.

For the most part, thank goodness, people have been so lovely when I tell them. They’re so so happy for Adam and I. I remember my day job colleagues squealing and gushing when I told them the news about my engagement. The cute little girls in the class I spoke to in Scotland were queuing up to see my ring. These genuine niceties make me feel so normal.

I see parents hopeful their little girls with Ichthyosis will marry one day, become parents. I don’t know if my parents ever wished that for me. I hope they wanted that for me. Even more so I’m so glad they wanted me to have a full life – one where marriage and children may be a part of it, but it’s still okay if those things didn’t happen.

Like Lindy, I can’t wait to be a red bride. It feels like a precedent, a chance to prove the naysayers wrong. While I’m well aware that the wedding day is merely a day, and marriage is for life, I really can’t wait to throw the biggest party I thought I’d never have.

So, next time you find yourself rolling your eyes when you hear your friends’ excitement over their wedding, give them a break. Weddings are special. And for some people, it’s something they thought would never happen to them.

Carly Findlay (@carlyfindlay on Twitter) is a blogger, writer, speaker and appearance activist. She challenges people’s thinking about what it’s like to have a visibly different appearance. She blogs at carlyfindlay.blogspot.com.

If you want to listen to the original chat – “I don’t care about your wedding” – it’s right here. In this episode of the Mamamia OutLoud podcast, Mia Freedman tells Jamila Rizvi (lovingly) that she doesn’t care about her upcoming wedding: