It was an ordinary morning in mid-December 2013. I woke up at 6.30 am – my then boyfriend (now husband) was off to work. I checked Facebook, Twitter, my email and my blog stats. There had been a big spike in traffic overnight, which surprised me because I hadn’t blogged recently. The traffic came from Reddit. Shit. While I had shared a few of my blog posts there previously, I had also heard Reddit described as the bottom of the internet. I clicked on the link – and it took me to the ‘What the Fuck?’ forum. There was a photo of me, dressed up, smiling and holding a glass of champagne in a dark function room, with the caption, ‘Made me say it’ – the inference being that my face made them say, ‘What the fuck?’
I scrolled through the comments.

What does your vagina look like?

WTF is that? Looks like something that was partially digested by my dog.

Lobster.

She looks like a glazed donut.

I dated a girl with a mild form of ichthyosis, once. Thankfully, she was Filipino so her skin was naturally brown, otherwise she’d be as bright red as her. I thought her skin was cool … it certainly wasn’t unpleasant, but had a nice texture. Plus her boobs felt like underinflated basketballs … Very fun to squeeze :)

Seeing people like this smile makes me uncomfortable. It looks like a lie; they are only smiling in an attempt to fool themselves that their lives aren’t horrible. You can see it in her eyes. The same rehearsed dead-eye mouth-smile in all her pictures. Gives me the willies.

And there were countless diagnoses (so many people educated by Dr Google) and assumptions of sunburn. They annoyed me a lot. Not to mention that that photo was actually taken on one of the happiest nights of my life, when I met the Rush TV show cast.

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What the fuck indeed. My worst fear had come true. I was the subject of ridicule on the internet. This is why I had held off from sharing my photo online for so many years. (I think it took until 2005, when I set up a MySpace account, for me to share – almost 10 years after I started using the internet.)

There were some supportive comments, though.

There, but for the Grace of God, go I. Parents, teach your children not to laugh at people that aren’t what society deems as ‘perfect’. That’s my sermon for the day, keep your comments to yourself if you don’t agree with me. I don’t need any help, thanks tho. Except for her condition she has a smile that makes her look like Geena Davis.

One guy said he wished he hadn’t missed his chance to ask me out on a date. And this guy, he was a standout:

You, madam, are the strongest motherfucker I have ever HEARD of, let alone met. If you are ever in Boston, I would be honoured to buy you a beer.

A little shocked, I wrote a Facebook status about the Reddit post. And then I modified it, and posted a response on Reddit:

I knew the day would come that someone would create a Reddit thread about me, using my photo, having a laugh at my appearance. For years, that fear was why I didn’t share photos of me online. But now, after gaining confidence and support through years of blogging, I couldn’t care whether they call me a lobster or silly putty.
The love I have around me and success I have had through telling my own story to break down stigma like these Reddit threads is stronger than any of those words. Yes, I have ichthyosis. Yes, that picture is me. Don’t fear it and don’t criticise it. I am proud of the way I look, what I have achieved and for telling my story.
FYI: I have two forms of ichthyosis – a mix of Netherton syndrome and erythroderma. My skin is shiny because I use paraffin. My body is less red than my face as it’s not exposed to the elements, but it is generally more painful. Ichthyosis is survivable – I have lived a very full life.

My response quickly changed the tone of the comments.

The original poster gave me an apology.

I’m reading all this and I apologise! I was looking for ‘champagne fridge’ on Google images. When I saw your picture, I thought ‘WTF!’ and further: ‘allergic reaction’, also your hair looks a bit on fire so I put it here. Hopefully you see it as a good promotion for your blog and chapeau to you for being awesome!

A bit backhanded, but I thanked him all the same.

When this picture was posted overnight, I was content lying in the arms of my love, having just seen a band and eaten a great meal – a night filled with laughs. Meanwhile, these Reddit posters were making fun of a stranger on the internet. I think the location of this post, and the title, is a clear indication of the original poster’s intent. However, I say the others who joined in with the ridicule and armchair diagnoses are just as voyeuristic.

I am resilient. I’ve got thick skin. These are just words on a screen. I am safe and loved, strong and intelligent, and can fight back with awesome. But I worry for those who can’t. What about those people who are mocked online and do not have the strength or words to defend themselves? Or even continue living?

My blog about Reddit made national and international news. I took calls from CNN (I said yes to a story) and The Daily Mail (I said no but they published one anyway, and the comments were the loveliest). I was the top story on News.com.au, and other local outlets ran my story. I spoke on Studio 10. TV presenter Charlie Pickering mentioned me on The Project – saying that the Reddit post meant my writing would be discovered. He was right – it did boost my profile and career. And I was all over US, European and UK news. I couldn’t keep up. But while I received lots of support from both friends and strangers, some of the comments on the news sites were worse than those on Reddit.

The Reddit abuse erupted twice more over the following couple of weeks, although it didn’t make the news.

The second time was in a sub-forum titled ‘I am going to hell for this’, and the post was called ‘A sophisticated lobster’. Commenters suggested I should be killed with fire. When I reported it to the administrator, he said, ‘Sorry that happened to you,’ but did not remove the post immediately.

The third time was in this same sub-forum, titled ‘Guys, you’ve angered the lobster again’. I reported it to the administrators but they didn’t respond directly. During these times, publicly they condoned it, and privately they were apologetic.

I called out the behaviour directly because I had the confidence to do so after blogging about my appearance for so many years. I thought I was brave enough to take it on (again), but I’m not. I can’t stop this cruelty.

When you are threatened in the street, you know to call the police. But who do you call when you’re threatened online? The founders and administrators of sites like Reddit have a duty of care to people’s emotional and physical safety. I did not feel safe when people said I should be killed with fire.

***

Reddit was the first time I’d gone viral. Going viral felt out of control. While it was exciting to see the blog stats climb (80,000 hits in two days) – and I was constantly checking and screen-shotting them – it wasn’t exciting to wake up to awful comments.

I couldn’t control who saw my blog or commented on it or reproduced my story and photos. I couldn’t unsee the hate speech and death threats – but I did pass on the job of comment moderator to Adam, and it wasn’t so easy for him to read them either.

I still get a huge amount of traffic from that post on Reddit, and from some of the stories written about it. Stories about my Reddit experience pop up occasionally – in mid-2015 there was a spurt of international coverage, 18 months after the event. Today, my initial post about Reddit is still the most viewed of my blog.

It’s the story that keeps on giving. Bullying is a pack mentality, but so is kindness. The amount of support shown soon overtook the number of negative comments. People killed those trolls’ comments with kindness. Minds were opened, the Redditors told me so. And I have been stronger and bolder than ever, writing much more focused content, because I now know my positive influence.

I want my work to reach as many people as possible – I want to influence the way people think about appearance diversity and disability.

Being a writer – online and through this book – and having a social media profile can help me achieve these goals. But I want my work and writing to reach the right people. Going viral is not the right way to make this happen. Longevity is not 15 minutes of internet fame.

Internet fame doesn’t last long. For about a week I was that red woman who took on Reddit trolls. And for the rest of the year I was that woman that they’d maybe seen somewhere before ...

This is an extract from Say Hello by Carly Findlay, published by HarperCollins Australia and now available at all good bookstores and online.

For more from Carly, you can follow her at carlyfindlay.com.au, and on Facebook, Twitter and Instagram.