It's almost like I censor myself from addressing all of the micro aggressions I encounter - because I worry about the perception of complaining too much or finding discrimination that others don't see. They don't see the discrimination because maybe they've not experienced it. But this is my truth, and I will tell it. And gosh it feels good to tell it on my own terms.
I can't wait to be a red bride. I wear my colour with pride, appreciative of the opportunities it's given me. I'm 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.
"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."
Replace Lindy's references to her size with my skin and that's me.
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. The independence I gained - by default - meant that I made everything else in life a priority. Education, career, travel. And as I said to a friend, last year this time I had no reason to contemplate such life changing events. But so much has changed in a year. And now I'm living the unexpected.
However, 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.
I was recently asked to do some mystery shopping as a diversity awareness exercise for a friend - 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? (For more on these sorts of issues, see The Washington Post.)
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 ok 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.
Something else that hasn't been in my sights until recently are babies. But with marriage, it's a possibility. I'm 33 next month, and sometimes I find myself getting clucky. I always worry that writing about babies is too personal for social media.
The subject of babies hasn't been the easiest to think about due to the genetic complexities of Ichthyosis, and it's hard to discuss as it's already been fraught with other people's' judgment. But yesterday, I did. I asked Adam if he minded me discussing babies, he said he didn't. And I got the loveliest messages from friends, telling me that I don't have to be a parent to parent.
My friend Lucy said:
"Even if you have no children of your own Carly and Sam, you are wonderful women both doing positive things for numerous girls affected with ichthyosis. I never thought I'd be able to have children, I just had my hysterectomy a week ago. I am sad I'm unable to have more children but yet I couldn't have imagined my life without an ichthyosis child. I wanted so bad to try for another baby and hope Chloe would have someone else who shared her skin. I don't have to do that. I can go online and get/give support that her and I need. You're both amazing women and do more than you know."
My friend Stephanie gave birth to her second baby this week. She's got Harlequin Ichthyosis and was the first person with HI in America to give birth last year. Congratulations Steph - you look amazing and your two kids are gorgeous! I am feeling quite reflective right now. Three friends with ichthyosis have given birth this year, another is due soon.
A baby born into the ichthyosis community is something to celebrate - for the mother and for the little baby. Because it's such a miracle! Maybe it's a new baby with ichthyosis, or maybe the mother has the condition. It's wonderful to know in 2014 this can happen, and there is excellent medical and social care available for the family.
Friends with Ichthyosis have said they never considered babies to be in their future. Doctors never raised it as a possibility and health complications plus the difficulty in finding a partner meant babies haven't been a priority.
I don't know whether I will have a baby. Maybe. That's for Adam and I to decide. There's so much to consider - from finances to genetic testing to nappy changing (!!) and my health. But it's comforting to see it's a definite possibility, that there is medical support and that the little one will be loved by so many.