10 January 2014

How someone sees me.

It took so long to reach the point where I didn't worry what others thought of me. I know who I am, am comfortable and confident with how I look and am actively educating people about what it's like to live with a visible difference and chronic illness.

But then Reddit happened. And I've been struggling a little. I can't pretend the Reddit experience didn't affect me. To have my picture analysed, diagnosed, ridiculed and threatened by hundreds of faceless people was hard. There's very little recourse with the administrators of the site, except to set the record straight myself. And then to have some similar comments be left on this blog hurt too. It stressed me, and now I'm skin-sore too, an unfortunate outcome of being stressed. My confidence has taken a beating.

As a blogger, I can't help wonder whether I brought this on myself?

Was it inevitable that one day I wouldn't be able to control my story and image - the very thing I have been doing through blogging?

I keep hearing the old "you put yourself out there, you gotta expect the criticism" line that is all too often thrown at writers - usually from people who don't write about themselves on the Internet.

Should I have ignored the link I saw in my blog stats to protect myself?

Did I inflame it by responding?

Is this what I eventually wanted - some sort of fame sparked by an Internet war?

Would writing yet another post about it be a perpetuation?

No to all of the above.

I didn't ask for hate speech. Looking different does not give people permission to spew their misinformed and offensive opinions about the appearance of a complete stranger on the Internet. Or in person. Those Redditors, they knew nothing about me. Even when they cut and pasted words I had written about my relationship onto their hate-filled forum, wrung them out and laughed at them, they still only managed to get to know me from two sentences. They judged me only on how they saw me, nothing more. They should be judged on their actions in the dungeon of the Internet. I wonder what they're teaching their children about diversity?

Hate speech is driven by a pack mob mentality. But so is kindness. So much so.

I have been following the incredible story of Lizzie Velasquez - a young woman with a visible difference. She was ridiculed by YouTube commenters, and though self advocacy, she took the power back. And on her Facebook page yesterday, she expressed her gratitude of getting 50,000 followers on YouTube, saying "I went from YouTube being the one site that crushed me to the one site that has helped turn my life around." Bravo Lizzie, you're one of my appearance activism heroes!


Lizzie's TedTalk inspired me to dip my toe back into the blogging water. Aside from being in holiday lazy mode/time consumed by being in love/uninspired to write here on my blog, I've been scared. What will they be saying about me today? I've woken up in the middle of the night a few times - scared of strangers' nasty words - the very thing I wasn't scared of when my picture was first misused. I want my blog to be my safe place again. I want people to be visiting because they want to read, not because some of them are seeking freak-show-esque entertainment - hate reading on steroids.

I think the readership is returning to normal. Hits are still high, considering I have not written much lately. People are reading because they want to, I guess. I have had so much support - the love from strangers (and friends, plus the media) is unfathomable. I still haven't got through replying to all the emails and Facebook messages sent - I'm sorry. I've had a few friends and social media colleagues write amazing posts in my defence - Arnebya, Friday, Jenni - and I ended up linked from A Mighty Girl and National Geographic too! A big thank you to everyone for showing support.

Over the Christmas holidays, we had a celebration for my Mum's birthday. I met M and S, some friends of my parents', for the first time. I've been in contact with them for about a year on social media because they've been interested in my writing. They've come to know a lot about me through my blog and also what my parents have told them. And so it made my day when I was given an artwork made by M - an upcycled frame containing scrabble pieces spelling 'I am not an animal', with a dedication 'the day Carly took on the Internet and won'.

I may not have taken on the Internet in such a big way. I'm not as brave as I thought. But I did make a small impact - one that matters to me. People from across the world have written to me, telling me they are now confident enough to accept their ichthyosis or visible difference through reading my story, or that my attitude and resilience gives their children hope to be confident and assertive. A reader wrote to me telling me my writing saved them from making the worst decision. Knowing that they're ok, just maybe because of my words, means so much.

My boy took that picture of me that's at the top of this post. He used it as his phone screen saver, which made me all shy. I'm still getting used to being the object of another's admiration. The vain side of me initially didn't like it - thinking it was too close up, that my forehead and teeth are giant and my lips are wine-stained. Then I realised that this picture is how someone who knows me and loves me sees me, which is more important than the way someone who doesn't know me and has bad intentions sees and speaks about me.



  1. All I see at the top of this post is a beautiful person with a beautiful smile, who looks very happy ;)

  2. Then I realised that this picture is how someone who knows me and loves me sees me, which is more important than the way someone who doesn't know me and has bad intentions sees and speaks about me.

    Carly this sentence bought tears to my eyes.
    Bravo Carly x

  3. You took on the internet and won... Even if you made just one of those hate-mongering trolls take a long and reflective look at themselves and made them reconsider their own actions, you won big time. And you gave strength, inspiration and hope to so many others around the globe - the ultimate win! You are awesome! Very glad that the experience didn't stop you from getting back to blogging.

  4. Well written as always Carly. Once again, I'm so sorry that you've had to experience the wrath of strangers, however some beautiful readers of mine recently told me that having "haters" is testament to you making headways in terms of your writing. I think you answered the Reddit critics with grace and with honesty, something that takes enormous courage. You didn't invite this - but you are dealing with it bravely! Keep breathing and keep writing, gorgeous.

  5. I'm glad you're not letting other people's ignorance and nastiness deter you from blogging. It never ceases to surprise me how people use freedom of speech as a right to offend, bully and ridicule others. Like what about their rights? Should we not feel some type of way when they are infringed upon?

    Nevertheless, you handled the situation well and used it as teachable to educate them and hopefully, to get them to see that sites like Reddit need to be shut down because they are destructive, harmful and disgusting. Keep letting your light shine and being an inspiration for others!!

  6. It's a great photo.You can tell the photographer has love in his heart.

    Remember when I had my shop in Ascot Vale and I was held up and assaulted by a man holding a knife. One of the hardest things to deal with was the sudden exposure at a time when I felt most vulnerable. All of sudden my story was on the radio and in the newspapers. Total strangers knew stuff about me and I had no control over the situation. I was left feeling embarrassed and uneasy. Embarrassed for being assaulted and uneasy in world that had become instantly unsafe. It takes courage to take back your life when you have been abused. It takes courage to hold your head up high. I kept trying to work out why someone would do that to me. My councillor encouraged me to not try and work the abuser out as he wasn't someone that would even think about life in the same way as I do. I don't need to waste my time on working him out as I will never be able to.

    What you have been though is horrible Carly. I'm so glad that you are continuing to blog. Get out there and continue your awesome life.

    Those bullies will never know or understand beauty because they don't think beautifully.
    That man of yours, he knows what beauty is.

  7. Hang in there dear Carly. I have no doubt that your bravery helps many others with visible differences. I am sorry that offering your insights and experiences to the world sometimes causes you such personal pain. Know that you are doing a great thing by educating us all. You are amazing and I know it's not easy.
    Thank you for keeping going. The world is truely a better place for your words.

  8. My dear Carly, I don't know where to start with my response. All at once I want to say to you - ignore them, at the same time I want to say - stand amongst them and demonstrate how much taller you are !!! When the going gets tough for me ... my usual response is - I have a husband who loves and adores me, I survived cancer and no one can take my birthday away from me !!! So I say to you dear wonderful gorgeous Carly, you have parents, a boy and friends (reality or cyber) who adore you and you survive life everyday and no one can take away your celebration of life !!! So simply - they can go wallow in misery. The life enriched by you is so much more important !! Huge love and hugs to you. You inspire many, every day. DC x

  9. One thing I really loathe seeing around the Internet is the excuse "you put yourself out there" when people are attacked as you have been. Putting yourself on the Internet is not an excuse for people to behave badly any more than walking down the street is. Wouldn't it be nice if people could just not be dickheads? On the web and everywhere?

    I hope your skin is settling down a bit and not hurting as much xx

  10. Just i red about ur blog so i decided to visit ur profile. Mostly I am not in the habit of write to someone comments, but this time i feel that i have to write u something. Probably it is boring cos i see that a lot of people is writing kind of same words, but believe me it is going deep form my heart. U r incredible, inspiring person. U r giving me a lot of power. From ur photos i can see unimaginable joy. Most of the times people complain about little stuffs, and they can not note that other people have harder life, undeniably u have more obstacles than average people. Unbelievable is ur power, strength. I am sure that u r messenger of God.

    Take care and be who u r ! Your illness makes you unique, rich spiritually. You are chosen by God
    Love u !

  11. I'm sorry people can be so cruel. I try to remind myself in such situations how glad I am not to be them, because to be capable of that kind of casual hatred is the sign of something wrong. Thanks for your story and your words. The blogosphere is lucky to have you,

  12. My first thought when I saw the top image... wow you radiate happiness.

  13. I had just watched her video and then I saw you share this link. I don't think I want to know what happened on Reddit, but I'm also afraid NOT to know and NOT share your story. I wish the world could meet you and know what I know; that you are beautiful in every way humanly possible. I would wish you strength, but I know you already have that.

  14. Don't ever stop writing! You are an amazingly talented, evocative writer and so passionate. I love reading your stuff. If your blog is getting more hits I'm sure it's just people who came to look but stayed to read!! We are all privileged that you share so much of yourself.

  15. Don't ever stop writing! You are an amazingly talented, evocative writer. We are the lucky ones

  16. When I look at your Carly I see a wonderful, caring, loving, intelligent person. No-one has the right to criticise anyone else. No-one knows another's personal story. Just because you write and you blog are seen to be putting yourself out there makes no difference. Everyone who leaves their house puts themselves out there in some way. Anyone who interacts with others puts themselves out there in some way.
    Of course those comments hurt you, you are a human with feelings. You are the stronger person though to have said, "That is not okay." xoxo

  17. I've never heard of reddit before and I will certainly never be visiting it!! The way I feel - no matter how much you put yourself out there - if someone doesn't have anything nice to say then they shouldn't say anything at all. Simples. It must be really hard to do and its hard for me to know as I've not yet experienced anything negative online, but I think that it must only be because 'said' people of jealous and the best thing to do it just take no notice of it at all!! xxxx

  18. you are wonderful, hate is always out there for all sorts of reasons, trying to close our ears is hard but you have stood up to them, love your work beautiful lady xx

  19. I don't see your story as anything but informative and inspirational. When I look at your picture, I see a highly intelligent young woman capable of expressing herself very competently.I was going to write about those Reddit doofuses, but you know what? The hell with them. Stay cool, Carly.


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