02 May 2013

Ichthyosis Awareness Month: Mui's story ~ "I like that the fact I stand out goes right out the window and the real world comes in."

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 clich├ęd 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!"

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.

 

30 comments:

  1. Mui, you are a gorgeous girl with a wonderful personality. The ichthyosis does not make you who you are. You shine like a star because you ARE a star, not because you look different. Your family sees that, and your friends see that. Congrats on coming to terms with the disorder and making yourself into the best person you can be!

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    1. Thanks for your comment Jennifer - you said it all :)

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    2. Thank you Jennifer! It'll probably take a lifetime to accept who I am, but at the moment, I'm just in awe of all these wonderful comments! xx

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  2. Thank you for sharing your story Mui. You are a shining light.

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  3. Mui, I really loved reading this. Having known you since the start of your school days, I smiled when I thought of your wonderful feisty attitude to life. It was really interesting to read and understand your journey to accepting the person you are. You are a great girl and I hope that you are proud of yourself, of the strong young woman that you have become.

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    1. Thanks for your lovely comment Jennifer - I hope Mui reads this :)

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    2. Mrs McCallion! Thank you so much for your comment, I was thinking about you the other day actually as I was thinking of all those who have helped me along the way as i was writing this! Hope you're well! (note the tone in this...now that I'm online, this probably means I have to start behaving :D) xxx

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  4. WoW! That took courage to admit how, even though it's your normal, you still find it difficult tor wrap your head around it. I love your honesty. You.Are.Beautiful!

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    1. Thanks For stopping by Kitty! I am so proud of Mui :)

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    2. Thank you Kitty! xx

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  5. This was great, Mui. I loved reading your story.

    Cheryl from New York.

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    1. Hey Cheryl. Thanks for reading and commenting :) I know Mui will appreciate it

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  6. (((((hugs)))) Thank you for sharing your story.

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  7. What a gorgeous story! Thanks for sharing so much of yourself, Mui!
    And well done on your teachers assistant achievement - such valuable work!
    Everyone needs some mates to keep you on the right track - sounds like you've got it going on!
    Well done for being part of Carly's amazing project this month!

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    1. Thanks for your lovely comment Tash! You're right, Mui's got a great support group in her friends :)

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    2. Thank you Tash! I am so grateful for the circle of family and friends i have! xx

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  8. Mui , I am in awe of your courage in sharing your story. I wish that people didn't think so much that beauty is tied to a sense of worth . Outward appearances say nothing about the beautiful within. You are beautiful , strong and resilient.

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  9. Thank you so much for sharing your story. I really do believe that talking about and finding out about our 'needs' empowers us. So thank you again for helping to educate me.

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  10. Friends are the family we choose for ourselves, but it seems your own family is extraordinary as well, Mui! You write so beautifully, and I'm so glad you are working with special needs children. Continue enjoying life, and most importantly keep spreading love with your gorgeous smile!

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  11. What a great read! Enjoyed getting to "know" you better, Mui :)

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  12. I've known Mui for several years now, and yes first appearances did make me look twice at her - and I did. I am so glad that that second look has allowed both of us to share many wonderful times - a few giggles, an illicit beer or three! and many great and frank discussions about everything and anything under the sun. These conversations rarely revolved around Mui's Ichthyosis (unless I was one of those telling her "to get a grip"!) and seeing her grow through her teens to blossom into a beautiful young, strong and confident woman has been an absolute pleasure. Not sure that I really dig my drunken Rugby Sevens pics on her website but then again Mui isn't the only one that has tagged me when I was a bit under the weather. Big hugz to you Mui xxx tony

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