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.

I understand exactly how you feel. In 2013, just before christmas, my DP was knocked off his motorbike suffering horrendous injuries which needed life saving surgery and put him in the HDU for four days followed by a stay on the ward.

I had posted on my facebook and also logged into his account and posted to let people know what had happened.

I was knocked sideways by the support we had from an awful lot of people but some people were conspicuous in their silence. We have discussed this since and decided that we don't actually need people like that in our lives. I wasn't expecting much but support we had ranged from offers to help with childcare while I was running back and forward to hospital, offers to cook, someone organised food shopping, someone else contacted a charity to help us out financially and others just offered practical solutions to things or words of support. But people who had been in DP's life for over 20 years just said nothing.

I think he was really hurt but at the same time we do know who our true friends are now and those people have remained in our lives. The others, the 'sunshine' friends, you know the ones that are there for the good times and fade away when anything bad happens, can go stuff themselves.

I think it's good to know this and I hope you can make the decision to edge the people who can't support you through a bad time, out of your life.

I'm so sorry you are going through this, it's so hard when you get hit with dreadful news and then face an ongoing battle back to good health. I wish your dc all the best.

I do sympathise with you and your DD but, in all honesty, I don't think it's at all fair to put posts on FB and DEMAND attention. People may have stuff going on in their own lives, they may not like to publicly support something, they may just not get round to reacting to your posts as quickly and efficiently as you want. It's only Facebook, it's not the law that you like all your friends' posts.

A personal one is much more effective for people to resond to.

This is really good advice. Something personal written by you is much, much better than sharing somebody else's clickbait.

I would say even better would be to pick up the phone or send an email. Her godmother's response was disappointing and I can really understand why it hurt you and made you feel let down. But don't feel like you can't approach your other friends for support. Just because they haven't liked a post doesn't mean they won't offer support if you reach out to them personally.

Thanks Chica. Is your dd a member of AYME? If not, I highly recommend it as there's so much support and advise, especially regarding education too. The chat board is great for making friends too.

Bill - it was a personal account written by OP. She said so upthread.

I agree that it's disappointing that people haven't put a simple message on the post or contacted you privately.

However some people might not have seen the post, there's no way of knowing, and things do drop off feeds quickly, especially if you've got lots of friends or have liked lots of active pages. It's also difficult to know what to say or indeed to offer help if you live some distance away.

I would try not to gauge ongoing friendships on whether they jumped through this particular hoop, but instead focus on your daughter and re-assess later. It seems like you have some great close friends who have seen your need and stepped up into this role, and also some friends who might well be great fun but are more distant, that is okay.

I think you have to accept that people's behaviour and reactions on FB are all different, try not to judge someone because they don't react in the same way as you would, there are no rules and not even any norms or protocols.

I also think because someone hasn't actually contacted you, doesn't mean they don't care. Some people are great in bad situations and love to get involved and help, others struggle to know what the right thing to do is and fear getting it wrong. I don't think you can jump to the conclusion that the first group are good friends who care more than the second group.

I would try really hard not to waste energy over- analysing people's actions.

Hope things improve for you and your daughter quickly.

Sorry, I missed that post. That's pretty insensitive yeah.

So sorry you are experiencing this, OP. People are so ignorant of ME and many - including way too many medics - choose to believe it doesn't exist. Of course it does and it is so debilitating. I hope she makes a full recovery. Take it slowly.

I don't respond to these types of posts on fb either - I think your upset and distress at your daughter's illness maybe being misdirected towards your friends

I've had ME for 26 years, diagnosed at 24, I'm much much better, but still have to pace myself and nap every afternoon. People who know understand, but I don't tell everyone I meet, only if it's relevant

I can really sympathise, op. I was diagnosed with ME as a teen 17 years ago (symptoms for more than 10 years before that). My parents always made sure i was positive and focused on the things i coukd do rather than what i couldn't and this was reflected in what they told their friends.

One day, my Mum's friend rang and told her all about anothet mutual friend's daughter, who was just so hideously ill and how awful it was for her and her family. She had ME, had Mum heard of it? Mum was like "You KNOW that's what Rhoda has too!!" Her friend goes "Yeah, but she's obviously not as bad."

Said girl was regularly seen joging up the road with the family dog. Ok, it could've been her only exercise for all we knew, but i could barely sit up at the time!

She has since made a full recovery. I live an almost normal lifestyle but am plagued by exgaustion, pain and ill health.

What we learned is apparently you need to do the constant daily mail sadface and moan about how hard life is. If you dont, you're obviously not ill!

Also seconding AYME! I made many friends via their online forums and volunteered for them for several years.

I have friends who post things like this on Facebook - I don't usually reply.

I am sorry for what you and your DD are going through - I realise that it's been a shitty time (and remains so) and that you need the support of your friends.

I am just aware that Facebook is not where I'd go to get that support, for a few reasons:

As a pp said, the Facebook algorithm means that only a small proportion of your friends will be shown your post in their newsfeed - the others will have to actually visit your page in order to see the post.

When I see an emotional post I tend not to respond, I don't like that open-wound approach to social media, it makes me uncomfortable (I realise this is my issue, and I have no issue with other people sharing things, it's just not for me). If it's a good friend, and a very bad situation (death, miscarriage, terminal illness) and the FB post shocks me (I hadn't already spoken to my friend about it) I'd contact that person directly, rather than get involved with the post.

Some people don't believe ME/CFS exists - sad but true, it's been tarnished with the 'yuppy flu' tag from the 1980's and 90's. Most people are more accepting/educated now, but there remain some people who literally think it's made up (I've experienced this at my old workplace). I'm not sure what you can do differently for those people, probably nothing except try to keep your friendship groups free from people who lack compassion in this way.

From reading your post, some of your friends have been lax, and you need more support than you're getting - just make sure you're looking for support in the right places, whether that be good friends, family, charities, support groups and each other.

I think a lot of it is people not knowing what to say, for fear or sounding trite or putting their foot in it. I'm in that camp, but will happily help out in practical ways if I can - I've been helping a very poorly friend with school runs for the past 18 months, as an example. When she was diagnosed I had no bloody idea what to say except let me know what I can do - her partner took me at my word, asked for help with the dcs and it's carried on from there.

Maybe that's part of the issue with your friends and if you were asking for help with x,y and z they would be there like a shot, but platitudes on FB they're just no good at.

Ooo this too: I think a lot of it is people not knowing what to say, for fear or sounding trite or putting their foot in it.

Very true!

TYMES Trust is also for the young

25megroup.org/ for the severely affected.

Invest in ME Research are great for lots of things.

Yep, its not exactly one of those illnesses where someone can say "Hope she feels better soon!"

The best some people have managed with me is "Well at least it wont kill you!" No, but now I'm going to kill you

When an illness doesnt confirm to social expectations (ie. You wont get better or it will take a long time to recover) people really dont know what to say so they say nothing or come out with total bollocks.

Thanks for everyone's good wishes and I take on board what everyone has said. It hadn't occurred to me that it might be related to the illness, which makes me feel a bit more disappointed tbh.

Coffee has summed it up perfectly anyway. Sorry to hear about your DH and hope he's better now.

The bad times are a good way of knowing who's there for you. Some friends you expect nothing from anyway but others let you down with their lack of concern/ interest. In many cases these are people who've know DD since she was younger. We've moved around a lot and kept in touch with people, go to stay them and them to us. When they don't seem to be interested or concerned about DD or how we're coping, it makes me question whether they're friends or just people we've kept in touch with and whether it's time to let that slide. On the other hand there are people who I feel have shown themselves to be genuine friends.

It's not just about FB. There were only a couple of posts to say 'I'm sorry to say that DD has been diagnosed with CFS/ME but she's keeping her spirits up' and then the day to day one that I wrote in the spirit of raising awareness of living with ME as a young person (AYME's angle for ME Awareness Week). Plus various direct emails/ messages to friends with updates on how she's doing to those who have asked how she is.

To answer the questions I remember, I'm on AYME. And DD didn't mind me putting the account of her day to day life on there. Tbh she's too ill to care or express a strong opinion, but I wouldn't have done it, if I thought it was invading her privacy. It was written in the 3rd person but based on how I see DD living with the illness, what she's missing out on and what she has to deal with each day. It wasn't doom and gloom but it was written to encourage people to empathise and think about it beyond what we all think is just dealing with fatigue in a general sense.

I think these days the line between "friends" and "acquaintances" has blurred, in part due to social media like Facebook.

I have three very good friends and a number of acquaintances. (A few years ago I would have just said I had a lot of friends). I think of the best things you can do in life is to realise this distinction, apply it and be happy about it. It really is like the clichè of quality not quantity.

I have a chronic illness/disability and now have no social media at all in my life (apart from keeping an eye on my DCs' accounts )

I would recommend it, really. My friends are very very good friends and the rest are just people that I know - nice enough people, nice to have as acquaintances but not proper good friends.

BillSykesDog

I don't think you can really judge people by what they like on Facebook. For a start, they don't see everything. Algorithms filter things out. And like and share viral things tend to be filtered out most harshly. So it's quite likely they haven't even seen it.

Bill, I think you've got this wrong. If OP is Facebook friends with someone, and assuming they haven't hidden her updates, they WILL see her posts if they check their newsfeed.

I would also say, don't see it as a negative or sad thing - see it as an adjustment in your life which will bring you huge benefits.

I would seriously use your feelings now to re-assess your friendship group. (Interestingly one of my three good friends now wasn't a particularly close friend previous to my illness but has shown himself to be a good friend since).

Your feelings now shouldn't be of disappointment - see this is a wonderful opportunity to work out the people that truly matter to you, so you can "prioritise" your true friends.

(I wouldn't necessarily judge people just on the Facebook response btw I mean more generally in your interactions over the last few years)

Bill, I think you've got this wrong. If OP is Facebook friends with someone, and assuming they haven't hidden her updates, they WILL see her posts if they check their newsfeed.

Nope. Newsfeed doesn't work like that and hasn't done for years. It isn't just what your friends post in chronological order, it knows who you interact with most and filters out things it doesn't think will be interesting to you and filters in things which it thinks you will like. It filters in popular posts and posts that other friends have liked too, and filters out ones that don't get much reaction.

Go to your own profile page and look at your friends list. It will have a number of posts next to your friends names eg 10 new posts, 5 new posts. Go and look at them, you won't have seen half of them. It really does filter a lot.

This is just one of many reasons I don't use FB anymore.

I have fibromyalgia and has ASD and has suffered from various MH problems over the years, which has meant that we have come across just about every prejudice regarding the "invisible" illnesses and disabilities. If someone is simply uninformed and indicates they would like to know more, I will make an effort to educate them. If not, I am afraid that I just do not have a space for them in my head, or life. They can always come back to me should they decide to be more open minded.

Incidentally, my DD was unable to attend school during her GCSE years, so her school referred her to Hospital and Outreach Education, who got her through them. She was even allowed to take her exams at home and ended up with 8 GCSEs at grade B or above. For A Levels, I home educated her for a year, then she turned 18 and was finally allowed to be prescribed medication that made her well enough to continue them at college. She is about to sit her A2 exams this year :-)

So, if your daughter gets well enough to learn, but still not well enough to attend school, there are other options. If you think I can help in any way, just ask.

*DD has ASD etc.