To think that a 'friend' would care if your DC was seriously ill?

[chicaguapa]

DD(14) has CFS/ME and has been ill for nearly 4 months. She has been off school for all this time. It will take her 2 years to recover which will affect her taking her GCSES. It's a pretty monumental thing to happen to us as a family.

I know they say that you find out who your friends are in times of need and that some people step up and shine and others fade into the sunset. But I'm surprised and hurt by some friends' reactions (pleasantly surprised in some cases though).

I emailed her godparents a couple of months ago and a week later received a reply saying 'sorry it look me so long to reply, I didn't know what to say. Poor you!'. Then nothing at all since, not even to ask how she is.

I've not really put much on FB but did update my status when she was diagnosed and then more recently with a post to raise awareness for ME as it's ME Awareness week. It was a 'walk in my shoes' post and an account of what it's like to live with ME day-to-day. I haven't harped on about it but there is no doubt that it's serious.

I've been really disappointed at supposed friends who haven't commented on this or even just 'reacted' to the post(s). I have had RL contact with some friends so they don't count. But other 'friends' have literally done nothing, even though they have been on FB, liked other people's posts and updated their own statuses.

So AIBU to think that a friend doesn't feel moved by what we're going through and/or want to offer a word of support, they're not really someone I should class as a 'friend'? In RL too not just on FB. Just generally.

They will see her posts, Leelu, but if they have lots of friends/liked pages etc then it may fall off the news feed quite quickly, or be way down. I don't always see friends posts and it doesn't always occur to me to click the "new posts from friends" if I'm just doing a quick flick through. Also, I don't tend to "like" or comment on posts if they are very emotional/about quite a serious thing as I think anything you say in these circumstances can come across as trite and insincere. I would hate to think a comment is being demanded to prove that I am the posters friend as I think that's a very shallow measure of friendship (and possibly a bit over dramatic TBH)- although I would probably call or email a response in this sort of situation.

OP, I get why you feel a bit neglected by some friends and you are right that sometimes circumstances like these can show you who are your true friends. That said, sometimes people don't know what to say- as one godparent has actually told you (albeit she could have said something a little more supportive in addition to her "didn't know what to say"). They may also not want to intrude/feel like they are putting additional pressure on by contacting you and so on. These friends may respond positively to specific requests for support. I do understand that you may feel that if you have to ask, then they aren't worth bothering with, but I think it is worth giving a go.

I know when my dad was ill some years ago, a friend really didn't know what to say and "i'm sorry to hear he's so ill" was pretty much it. However, one day mum needed something doing and due to having to go to the hospital for a meeting couldn't do it- she called this friend as she was the only one who mum could think of who could help out with this specific thing. This friend was only too pleased to help and actually told mum she was relieved she was able to help- she hadn't known what to say or do, didn't want to offer help (she was worried it would be implying mum couldn't cope or that she might offer to do the wrong thing) and didn't want to bring it up in case she upset mum. Mum would ask he for specific things and she would help. 14 years later they are still good friends.

My point is, don't write people off too soon or because they don't act in the way you would like/the way you would- and certainly not because they haven't liked/reacted to Facebook status/posts. If I were you, I would ask for help/ moral support if you need it and if they don't support you even if you ask, then they aren't your friends.

Your poor daughter chica

I have sent you a PM which may be of some help with your daughters diagnosis.

Apologies for not reading whole thread, I hope her healthcare providers have tested her for coeliac disease to rule that out - it's often misdiagnosed as ME/CFS & yet is so easy to test for. for your DD & you

There's also a lot in that it isn't seen as acute or crisis level. If she had (eg) a broken bone needing surgery, then people will respond quickly because the need is immediate and after that it will clear. If you're saying 2 years then they can respond next week, next month, next year...

With ME it's a long term illness that doesn't generally have crisis times. it just goes on (and on and on and...) So there's not the "I could do with people making me meals for the next week while treatment is on" it's potentially several years of quietly not able to do stuff. Because of that people may be reluctant to say "oh I'll bring round a meal" in the way they would for an operation because they may be thinking "will they expect it regularly?" "I'll do it next month when I'm less busy" etc.

For example, my friend going through cancer treatment, has a couple of people that bring her meals on the weeks she has chemo. That's seen as an acute need that week. Not that there wouldn't be any point doing it for the other 3 weeks, but she doesn't need it as much, so they give it the week she really needs it.

If she was in the situation in that every week it would be lovely to have it done, but never any week worse than another, she would probably find that she never got it.

I have a slightly different perspective on this. I am in a similar situation with a very sick relative, and some people have been amazing at stepping forward, offers of help, listening ear, really amazing- especially those who are local or I see them quite a bit. Others, mainly those who are a long way away or where I only occasionally speak to them, say much less including one or two who said almost nothing at all- with a couple of exceptions of friends who have made a huge effort.

Some people think that this means those who are not present and involved right now never really cared about us, or aren't true friends and must be cut loose. I'm not sure that's the case. Most people I know have a lot on their plate, and their own caring responsibilities and stress, even just the mental capacity to cope. Others never really were the type to call someone or initiate anything, often not having the confidence to call and not knowing what to say, some never text/use Facebook. Perhaps a couple are quite lazy as well. The whole point of having a wide circle of relatives and friends is that it's shared, and that some have, at that time point, the capacity to step up, offer more and to be better friends, and others don't in a very active way, but that doesn't mean they don't care whatsoever, or couldn't contribute in the future.

When my children were tiny, I can definitely think of a couple of instances where really bad things happened to my friends, and although I might have called once a month, I certainly wasn't in a position to help by cooking, physically doing anything and so forth, keeping my own head above water was hard enough. I have a friend who has apologised for not being there for me more recently, as she also has a heck of a lot on her plate but has been great these past few weeks. If I'd dropped her a few years ago for being crap, I wouldn't be able to reconnect with her now.

These type of chronic illnesses require long-haul support and long-haul relationships, I wouldn't measure whether you are going to get these by responses to this post.

YANBU I would even enquire, offer to help, and show concern for a child of a friend I barely knew, let alone proper long term friends. They are clearly self absorbed and not taking the time to understand how this has affected your daughter and of course your family as a whole. They aren't your friends, I'm sorry.