This is a story from Adam, my love. He writes about how his perception of beauty has changed since he met me.
Life with me has been a learning curve for him – getting used to my skin, my temperature and the stares and comments from strangers. He’s doing pretty well.
Adam is so generous and accommodating towards my condition. I’m in awe of how much he’s been willing to learn and also his kindness. He’s been an amazing influence in my life.
In March, Adam asked me to marry him. I said yes!
He’s not been in my life for more than six months but in this time I’ve seen how wonderful someone who really takes the time to understand Ichthyosis can be. It hasn’t been easy – there’s a lot for both of us to learn – especially for him about my body temperature regulation and the amount of skin I shed.
But I’ve had the biggest lesson – that if at first someone is confronted by my skin or the way I look, educate them and give them a chance. I almost missed my chance with Adam as I was too focused on his sheer ignorance of Ichthyosis.
How could he expect to ever come across this rare condition? How could he know how to react when he first met me?
And I let my guard down, he got to know me and we love each other so much. He always makes sure I am comfortable. It is wonderful.
Love has been hard to come by for me. Complete love and compassion about Ichthyosis has been harder. At. 32, I’ve finally found my Mr Right. Don’t give up on finding your The One, no matter your Ichthyosis.
I never thought I’d find the love that I’ve found with Adam. I’m going to marry this beautiful man, and I’m so excited!
“My idea of beauty has changed since meeting Carly, I always thought that it was all about their appearance but now I don’t judge on how they look on the outside. I see all people as the same, even if they have a visible difference.
Some of the things that Carly has been used to for ages (skin flakes and oily skin) has taken me a bit to get used to. It was hard at first trying not to wipe off the skin flakes or oil that she leaves behind on me but now I just ignore it and even stop her wiping it off my face. I find that if I have some of her skin flakes or loom a little oily it might draw some of the stares towards me for a change, instead of always staring at her.
Carly has taught me so much about living with someone with a visible difference, all the daily maintenance she has to do and staying cool during the hot whether. It takes some getting used to living with someone with a visible difference but now once they teach you more about their condition, what they need to do on a daily basis. It was hard at first getting used to everything that Carly had to do like applying her creamy daily, resting a lot and staying cool. Like most of us we can regulate our body temperature like when it’s hot we sweat to stay cool, but with Carly’s itchyosis she can’t regulate her body temp as easily and doesn’t sweat.
Even though I don’t have a visible difference I thought that it would be years before I met someone that would love me as much as Carly does. Now I have someone that loves me for who I am and I don’t have to try to be someone else. I now know that I have someone that I want to be with forever and someone that wants to be with me forever.
To anyone wanting to be with someone with a visible difference, just give them a chance and you will see just how nice they are. Not all people with a visible difference are a recluse and most of them do things everyone else does. Most of them arn’t living off the dole living pay to pay, or even homeless but are successful people living amongst us. You might hate being in a wheelchair or having a scar after minor surgery but some people have had to live with people staring at them for most of their life. You might be in a wheelchair for a few weeks or months, just think that you will recover from your visible difference soon unlike others that have to live with it forever. They are just as nice as any of us without a visible difference, some are even nicer and kinder. It’s good to give everyone a chance even if they have a visible difference, they could be your solemate, or even have the same interests as you.
Since being with Carly, my idea of beauty has changed, it has gone from Supermodel beauty to inner beauty. It’s like being nice and loving on the inside and not mean and nasty. Carly is such a nice loving person and shows me plenty of love and cares for me. I don’t see her Ichthyosis anymore I just see her beautiful face and feel her loving heart.”
May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.