When I first started talking with Mui online, I flicked through her photo albums and was taken aback by how similar we look. (The doctors have told me that the genetic make up of people with Ichthyosis means there’s a likelihood of similar face shape and bone structure.) I mentioned our similarities to her in a comment on her photo and I received a rather abrupt response denying that we look alike, followed by an apology later on. Mui explained to me that she had not yet fully accepted her Ichthyosis. She has been incredibly courageous in writing this beautiful piece for me and I thank her for her raw honesty. Good luck with your journey of self acceptance Mui – we are all here for you!
“First thing most people see when they meet someone is their appearance. They may be pretty, they may be tall they may be the opposite. But when people meet me for the first time, they are greeted by something that’s a little bit different. See? I look a little different to the rest of the population. I have Harlequin Ichthyosis.
When Carly sent me a message wondering whether I’d like to write something for her blog, I pondered over it because I’m not really someone who wants to totally accept the fact that I have a skin condition. But I’m here to try and accept it.
I was born in Hong Kong in 1992. After a beginning that was spent in hospitals and institutions, my future parents met and began fostering me when I was one and a half years of age and adopted me when I was three years old.
I have always struggled with the idea that I have a skin condition. I know that I am ‘special needs’ but I suppose I’ve always held the mentality that if you are a person with special needs, you are going to be cognitively delayed. It’s a very clichéd outlook I know, but I’m slowly beginning to realise that you’re going to be termed as a person with special needs even if you aren’t, even if it’s just physical.
My parents have always tried to give me the best chances in life and I am so thankful for that despite the fact I may not always repay the favour. I admit that I’ve sometimes tried to play the “special needs’ card to garner sympathy, but I think that now, I don’t need to because I am now well aware of the fact that I stand out. It’s definitely something that I have had to come to terms with over the years.
I have grown up all my life in Hong Kong, a vibrant and multicultural hub with people from all walks of life. I went to mainstream schools and within those I received extra help with my lessons. I left school in 2011 at eighteen and after a mix of internships and volunteering I am now working as a teaching assistant working with people who have special needs.
Because I have often refused to talk about my skin, proclaiming that I’m just like people with “normal” skin, I don’t know a huge amount about it apart from the fact that it is incredibly rare and thanks to medical technology, there are more survivors today than there were maybe ten or twelve years ago.
Part of my difficulty in accepting that I have a condition is my attitude towards looking after myself. Of course I have to cream and bath with emulsifying ointment and I know I should probably do it more often. But I think part of me thinks that due to the humidity in Hong Kong, the skin is taken care of!
Even though I have a skin disorder which is not the easiest to get my head around, I do try to live a normal life as possible. I have a great group of people apart from my parents that are so close that they’re not afraid to tell me to get a grip and I like that. I like that the fact I stand out goes right out the window and the real world comes in.
As I have grown up over the years, at the age of sixteen, I decided to give up on the idea that having Harlequin Ichythyosis was just a short term thing and it would eventually go away if I didn’t think about it. However, here I am, at 20, and I think I’m ready to accept that this is something that I’m going to have for the rest of my life. I know that it is my choice to accept it. And I think I will accept it, along with whatever else comes my way!”
For Ichthyosis and appearance diversity resources, click here.