To be troubled by this fb page

[troubledBythis]

Run by a parent for their disabled child.
I totally understand it may be an outlet for them and a coping strategy or a place to have human contact as I know personally it can be isolating (I have a child with SN) but this seems to be gathering pace.

Huge details about everything and dates times of when they are at appts and where etc. Intimate details of conditions etc just too much ? And posited not just in the actual fb page but also on other pages (one at least unrelated to health or any of the conditions just a general type page)
Something is just bothering me I’m not sure if it’s the details amd photos and lack of any privacy for a teenager who perhaps cannot consent or understands how far all their personal details are going ? I’m not sure I don’t mean this horribly as like I said I do see how it can be isolating but this is so much now and increasing and something just feels wrong about it.

Sounds like you had a good gawp and a nose at something you are so troubled by.

Well I had joined initially as my child has the same condition but then I kept seeing duplicate posts and wondered why but looked again and it’s posted on other non medical pages too

@JunkieMonkey

Sounds like you had a good gawp and a nose at something you are so troubled by.

It's not wrong for OP to look more closely, if her first glance indicates a possible safeguarding issue.

It sounds awful OP, AND I would consider reporting it. Not so that the parent gets into trouble, but so that someone can explain to them why this is wrong.

I think it just crossed my mind how much detail has been put out and how frequently and that there is no privacy for them if that makes sense and wondering if the child even realises it and I know it can be an outlet at an isolating time but surely there are other ways for support if it was confined to one page but this is multiple ones and not all medical so the level of detail on random public fb pages just felt wrong

I think I would be troubled by this, by the lack of confidentiality and also by the attention seeking. She may not have intended for it to come across that way, though. Can you point her towards a self-help group or organisation related to the condition that she could contact?

I do feel like it’s probably a case of feeling very isolated and a way to reach out and have support etc. It just seems to have reached such a level now. One group non medical have over 1 m members and it feels wrong to then have someone’s full medical history and detailed updates so often when their understanding of how far this info is reaching is perhaps not accurate ?
I could suggest some places and tbh most support has come from the hospitals and drs so I’m sore it coukd be accessed remotely even at the moment with professionals and although I’m sure most people who are on these groups mean well and are supportive it just seems too much info put out there.
Even here is anonymous but fb isn’t

Maybe age is a factor too my child is a lot younger and this is a teenage dc so it just feels very intrusive and sometimes the photos where the child isn’t feeling well make me feel quite sad as taking a photo of a child unwell for their fb page doesn’t sit quite right would they want that image circulated I’m not sure

On the non-medical pages, can you message the page moderators and ask them to message her. Ask them to say that from a safe-guarding/confidentiality point of view, it’s not appropriate to be posting this information on their pages.

That’s a good idea I think maybe that’s the way to go
I don’t want to upset her but equally I feel maybe she doesn’t realise the content and volume of information is sometimes not ok ?

@JunkieMonkey

Sounds like you had a good gawp and a nose at something you are so troubled by.

What a ridiculous response.

My child is severely disabled, and I have noticed a few parents that I know doing similar things with blogs and Facebook. I guess it helps them to cope with very difficult circumstances.

However I would never even dream of doing similar. Our lives are so different (and at times difficult) to other families. So one of the few things I do have control of, and a way to keep things ‘normal’ is to make sure my daughter has as much privacy as she can.

I would have been mortified if my mum had shared medical information about me with the world when I was 7 - and I figure that’s what DD would feel too, if she was able to tell me.

But each to their own I guess, I wouldn’t criticise how others raise their children. Though the selfies in the back of ambulances do make my teeth itch!! (I tend to have other things on my mind at that stage )

Yes I do think there’s the element of knowing my much younger dc would be unhappy so knowing this child is very nearly an adult it feels intrusive.
But obviously I do t know her exact level of understanding although I would be surprised if she if fully aware exactly how far her detailed medical history is going but it’s more the fact I feel so many strangers know how vulnerable she is and it feels wrong but I do see how it can be the parents needs for support driving this and not from a bad place