What it feels like to go viral.

It has taken me so long to write this post. Almost two years of processing my feelings and drafting my words. Because the impacts of going viral are both temporary and long lasting.

I want as many people as possible to see my posts. But I would never want to go viral again. Because going viral was not something I was prepared for. And it’s taken a long time to write about, because it affected me more than I imagined.

Going viral is perhaps a goal for bloggers. Most months I see posts in blogging Facebook groups asking how to go viral. I see bloggers actively chasing virality - aiming to be published on viral sites. And I cringe.

Bloggers talk about their Pinterest or blog posts going viral, and I wonder what they define as viral? How many hits? How much of their confidence was shattered? They ask for advice - and others say you can't control virality, it just happens. I offer advice in an attempt to dissuade their wish. You've got to have thick skin to go viral.

I went viral in December 2013. One part of it I had no control over because someone had posted a photo of me on Reddit. And then when I took on the bullies, and wrote about it, my story went public and lots of news outlets wrote about it. I've written and spoken about it a lot, so I won't rehash what happened today. You can go back and read and listen about it via those links.

Done? Read on!

The dark side:

It seems every week there is a new viral sensation online - and most times, the subject is not intending to catapult to fame. As I've experienced, going viral seems to be both a positively surprising and difficult time - a rollercoaster of instant fame and accolades as well as sheer vitriol from keyboard warriors.

The New York Times reported on the sinister side of viral fame, detailing the way 16 year old Alex Lee's life changed in November 2014 when he became #AlexFromTarget. A teenage girl took uploaded of Alex to Tumblr - a photo that was sneakily taken the previous week, with the caption "Yoooooo" and soon his photo went viral - the hashtag was born. While teenage girls threw themselves at him (Alex told the NYT: "I’ve been in the house the entire time," he said. "I’m kind of scared to go in public."), he also received death threats and was called obscene names - his parents feared for his safety.

Alex gained over 500,000 Twitter followers in one day (more than the population of his home town Frisco) - and almost a year on, a mundane tweet stating he's hungry was shared 695 times.

Going viral can also happen when someone rattles a community - like a blogger taking on the Thermomix lovers. My blogging colleague Melissa Hugzilla describes the experience of going viral "exhausting and exhilarating and surreal and stressful". She wrote about the Thermomix - asking if it was viral, a cult or a pyramid scheme? - and dissected the experience here and here.

The blog post went viral and was then republished by Mamamia. The views and shares escalated quickly - and she endured callous comments from strangers, especially Thermie fans. In her posts about going viral, she said - a number of times - she found it hard to believe whether it was all even real, consumed by checking stats and screen-shotting them for prosperity. I love how she hasn't taken herself too seriously - in describing the impact of emotional exhaustion, she writes: "And then, the final crash. I curl up in the foetal position on the lounge and fall asleep at 7pm. I am so thoroughly over myself.The post isn’t even that good...I also discovered that I really do prefer obscurity. I don’t know how Kim Kardashian does it."

Here's what it felt like to go viral:

Going viral felt out of control.

While it was exciting to see the blog stats climb (80,000 hits in two days) - and like Melissa, I was constantly checking and screen-shotting them, it wasn’t exciting to wake up to awful comments. Some of the commenters told me that I should be dead. People said whatever they liked because they're not my supporters.

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 - only passing on the job of comment moderator to Adam - and it wasn't so easy for him to read them either.

New (or voyeuristic) readers had no context about my life and previous writing because they mostly only saw one thing I’d written.

While I do my best to keep aspects of my life private from my blog and social media, those who know me are excited to see me on a website they read and say "she works with me" or "she comes into my shop all the time", and so they reveal more of me than I intend to. This happened a lot after Reddit. My workplace and home suburb was revealed.

Lots of people sent me friend requests and messages in Facebook - some sent me offers for 'cures'.

People who saw how distressed I was told me to switch off the computer. They aren’t digital natives and don’t use the internet as much as me, and they just didn’t understand how it wasn’t easy not to switch off.

The misuse of my photo on Reddit didn’t happen just once. It happened twice more, in murkier depths of Reddit, between Christmas and New Year. In hindsight, it was probably worse than the first time – because the comments became threatening. I was scared for my safety. When you are threatened in the street, you know to call the police. But who do you call when you’re threatened online?

When I commented on the threads, demanding for my photo to be taken down, I was just mocked even further. One moderator told me that Reddit doesn’t own the place the picture was posted to, and so I’d have to contact Imgur. I privately messaged the moderators – and I realised one thing.

Trolling is fueled by a pack mentality. The same moderators who were condoning this stuff on the public forum were apologetic to me in private messages. They felt some sort of compassion I guess, and the photos, comments and then threads were removed. When I tried to raise attention to this, it went unnoticed. People were on holidays, the time I took on Reddit was a week before (and that’s a long time on the internet).

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 - mid 2015 there was a spurt of international coverage, 18 months after the event. Today, the initial post I wrote about Reddit has over 99,000 views - 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 amount of negative comments. People killed those trolls comments with kindness. Minds were opened, the Redditors told me so. The media attention and most of the comments was overwhelmingly positive. I've got long term readers since Reddit. 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 as possible - I want to influence the way people think about appearance diversity and disability. I want to continue writing and hopefully release a book. Being an online writer 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…

My advice:

Ask yourself why you want to go viral? Fame? A measure of success? Can you handle the implications? Can you continue to maintain your profile?

Know that most people who visit your blog (or YouTube or social media platform) at the height of you going viral (when you're at your most contagious?) don't know you. They don't know what you're about and are only judging you from the 500 words you'd written then. They probably won't stick around - but if the nice people do stick around, that's great!

Remember whatever you write online is in the public domain. Your stories and photos are fair game for journalists. You might feature in media outlets you don't read or like. Try to negotiate fees to tell your story on your own terms if this happens.

Going viral does get you noticed. It wasn't all bad for me - I've achieved a lot since. But the attention will fade, and you'll have to continue to work hard to get noticed further.

Seek help:

If going viral happens to you, make sure you've got someone to talk to - someone who understands the online world. Make sure you're not alone through the experience.

Lifeline: 13114

Kids Helpline: 1800 55 1800

CyberSmart

Have you gone viral? Have you got any advice? Did you orchestrate it or did it happen accidentally?

(There is an edited version of this post on Daily Life.)

Why I discourage parents from sharing photos of their very sick children online.

I am very passionate about online safety and anti-bullying, especially when it comes to people who look different. One of the reasons I held off sharing a photo of me for so long during my early years of blogging (from 2001) was because of the fear of how it might be misused. Ridiculed. Ogled. Used in inspiration porn and "one like = one prayer" posts. Shared en masse. And it happened to me in 2013.

Being involved in the Ichthyosis and disability community, I see a lot of parents posting photos of their children at their most vulnerable - when they are incredibly sick.

I understand that parents are desperate for answers, treatments and even cures. And I understand the need to connect with others in similar situations online.

While people have the best intentions when looking for diagnoses and treatments for their children, I strongly encourage them to consider the photos they post online. Children have no choice in where their photos end up or how they're used. Talk to a doctor, email a trusted friend, but don't put pictures of your child in pain or naked online - especially when they're already vulnerable. I'd hate to see little ones - already in pain - have their photos misused.

In September last year, I saw a very concerned mum - desperate for answers about her little boy's skin condition - post a few photos of him in a public Facebook group. Her son's body was bloody, in severe pain and he was naked. While she was looking for support and advice, and understandably quite distressed, I urged her to remove these photos of her son from the group. She did, fortunately. I can't imagine how this child would feel if he discovered these photos when he's older.

I know parents are proud of their children, and worried for them too. I encourage them to share a photo of their children looking their best, not their most vulnerable. Consider their digital footprint.

I wrote this for Kidspot last year. View the original post here.

The internet is a fantastic place to get information, advice and support about treatments and the social aspect of a chronic illness or a disability. I blog both to connect with others who have a similar skin condition to mine, and to provide advice to and hope for others who are living with the condition by sharing my story.

I share a lot of myself on my blog – intimate details of my skin condition, and the emotional impact it can have on me. I’m comfortable sharing photos of myself online. I’m aware of the risks. But I hadn’t always been confident to put my photo online. For a long time I was scared that my photo would be ridiculed on the internet – misused and picked apart by cruel strangers. It was only when I found strength and support in the community I’d developed from blogging that I was comfortable to share photos of when my skin was at its worst. It was eight years after I started blogging.

In December 2013 my fear came true. Thousands of people visited my blog because someone had posted my photo on Reddit to make fun of my appearance. I woke up to 3000 hits on my blog and around 200 comments from strangers – (mis)diagnosing me, mocking me and telling me I should be dead. It was pretty hurtful.

The trolls on the internet found my picture and I fought back with awesome!

Instead of fighting back with anger, I fought back with awesome, writing a calm reply detailing my experience with Ichthyosis and directing people to my blog so they could read about the real me. I did this so they would be reminded that I am indeed a real person not for public shaming. I noted that, while strangers were saying hateful things about me behind their computers, I was content in my lover’s arms.

My response to the Reddit thread generated so much support from strangers around the world – even a half-hearted apology from the original poster. People told me they went to that thread to gawk, but instead they learned something. No one expected I would confront these bullies so publicly. I blogged about it and the story made local and international news. A bad situation had been turned around by my positive response.

The Reddit experience reminded me of how public the internet is. I am cautious of how much I reveal as a blogger – mindful of my words having an affect on my family, my fiancé, friends and my employer. I ask permission before I write about someone else. And I carefully select what photos I upload to my blog and social media.
How much do you reveal online?

I belong to a few support groups, which are fantastic knowledge-sharing resources and places to meet friends who just “get it”. This condition is very rare, and so finding people with it is such a relief. But sometimes I worry about how much parents reveal about their children’s illness online. Desperate for advice about treatments and diagnoses, they post photos of their children at their sickest; their blistered skin and body parts on show for hundreds of strangers to comment on. Parents reveal stories of pain and private moments – things I’ve experienced that I tell no one apart from my doctor and my parents. Fortunately, most of the comments on these queries are positive and sympathetic and offer good advice. But I wonder how much say the children have in their photo being shared so widely. Wouldn’t it be better to take those photos to a doctor, send or email them or private message a trusted friend who has had a similar experience?

Some of the support groups are public and journalists lurk to get a sensationalist story. The photos are available to be saved and distributed – just like my photo was. Children are vulnerable and their photos are misused. There are awful memes mocking illness, disfigurement and disability circulating on the internet. My blog has since been referred to in ridiculing threads about my condition – and I cringe thinking about what’s being discussed. There are pictures of innocent babies with the same condition as me being pulled apart through hateful words online. I’m really glad the internet wasn’t around when I was a child and that, to an extent, I can control how my photo is used.
It’s always best to get advice from a doctor – don’t post a photo that reveals your child’s identity

“When it comes to wanting advice about children’s illness, it is best to seek help from your own doctor,” says Martine Oglethorpe, a counsellor and expert in the way technology affects families. “If you are using support groups for information, keep your photos to a select few that you know and trust and only email or direct message photos to these people. If you want to post photos about a certain condition or want support or advice, make sure photos do not identity the child or show their face.”

“Whilst the online world can be a great source of information, connection and support, we must always remember that nothing is ever really private. It is imperative we remember that, especially when it comes to posting photos or details about out kids online”, she adds.

Parents, please consider how much you are revealing about your child’s condition online, and whether the forum you’re posting in is public. Consider how your child would feel if they knew how many people read about or saw pictures of their very private moments. Would they want the whole world to know what they look like in pain? And will it come back to haunt them in years ahead? If your child is old enough to understand the internet, ask permission to post their photo and tell them about who might see it (the good people and the bad).

Chances are you already take precautions about posting personal information about yourself and your children online – so why should photos of them at their most vulnerable, and intimate details of their medical condition and be any different?

(I found an excellent resource for online reputation management - check out Think U Know How. Also a mother spoke out about a meme created from her child's picture here.)