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.)