Writer and appearance activist Carly Findlay.

These very personal stories about children with disabilities and how parents feel about them are shared for many people to read and judge. The post might go viral. What impact will that have on a child – who often cannot give consent or understand the impact of their story being shared so widely? Most often, comments are positive and supportive, but they can be brutal.Are the children aware of the content and reach of the blog post? How would they feel of they read it? How would their teachers and friends feel? Has the child given their parent permission to write about them? Do they want medical procedures and melt-downs shared with strangers? What if the blogger's child has more fans than real life friends - will this make them feel more isolated? Or less? I hope they won't be hurt by other people's words. The internet is forever.

There are parts of my condition that are so private: how my face looks first thing in the morning, the piles of skin on my floor and in the bed, and the smell of my legs when they're severely infected. I don't let others see this side of my condition, because I guess it's like letting people see me go to the toilet. I want my privacy (and I am so thankful for my parents respecting this as I grew up). I hope to always put the best side of me online. I recently defended a toddler's right to privacy online and was lambasted by a parenting blogger's devoted fan. It felt like a slap in the face because my lived experience was so invalid to the blogger and her fan.

An adult with a disability may choose not to disclose their condition - the whole condition or certain intricacies of it. But sometimes children's identities are made public before they've given consent. When a disabled child's parent has already blogged about their disability or shared photos and stories on social media, their condition has already been disclosed. And so this impacts on their friendships, future employers, relationships and esteem. A friend who is a mum and blogs about fitness told me she's mentioned funny anecdotes about her children on her blog, but never named them. "I didn't want my kids' friends Googling my kids' names and finding embarrassing stuff about them on my blog", she said.

Something that's stuck with me for a long time is a post by a child psychologist. To paraphrase, James' mum asked her Facebook friends how to treat James' bed wetting - she did it with good intent, seeking advice and thinking others might feel less alone by her sharing her story. The next day, James' school friends laughed at and teased him because they heard he'd wet the bed. It started with all the parents talking about James wetting his bed, and this filtered to their kids.