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 aren't a friend.

I'm so sorry you've had to watch your DD go through this illness. It is truly debilitating.

My advice is to focus on the people who ARE compassionate - leave the others to the wayside and move on and forward.

Your energies need to be well chanelled so channel them wisely.

Although I do think its easy to sometimes over-analyse FB reactions, or lack of, in a situation such as this, I agree that I would expect a 'friend' to get in touch by another medium to see how you/DD is.

Also, I think there's still much stigma around illnesses such as ME/CFS, in much the same way as MH illness. Its very misunderstood and some people/friends just can't cope with any sort of ill health (you often see this with terminal illness).

I am sorry to hear about your DD, it must be such a challenging time for her, and for you to watch her go through this.

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.

YANBU
What a awful experience for your family. I agree with Nomud - these aren't friends and you need to focus on those are being there for you. I've experienced the same situation with friends showing their true colours (good or bad) in moments of need and it's awful. Do not class them as friends, move on and most importantly don't feel guilty for moving on.

This is probably related to the type of illness, sorry to say :(
I hope your dd is doing ok. I had post viral fatigue after an illness and was off for most of a year. My own friends didnt really know what to say/do. I suppose we were all young then. Encourage her social media contact with friends and meetups when she feels up to it. Was there a trigger for your dd?

I don't know about you tiny FB is a really unreliable place as fast as updates go. I wouldn't necessarily read too much into it. for your daughter

Sorry you are going through this

Illness can be lonely .

Can I ask how you know it will take her two years to recover ? I thought there was no way to tell with ME? (Honest question) .

Thanks for the support.

I think it is pretty clear that she's seriously ill. A lot of the comments below my status were along the lines of these replies, eg, what a dreadful debilitating illness.

The day to day account described what it was like living with it and whilst a 'friend' may not understand the illness or agree that it exists, they can read that and know what DD's life is like at the moment. I'm glad that it's not unreasonable to expect that that in itself should evoke some sympathy for DD.

I don't react to many FB posts either but would send a PM that wasn't so public. I get what a PP says about algorithms but I had a friend PM me as she'd seen that DD had ME and her DS had had it. We've not seen each other for over 20 years but it came up on her FB feed.

Tbh I'm just at the stage where if people don't respond, either to an email, text or FB, because they don't understand or agree or know what to say, they're not really someone I have the energy for.

Magnolias The paediatrician said we should expect her to take 2 years to recover and that we won't see any improvement at all for 6/9 months. He did say he couldn't promise but I think he was managing our expectations so we didn't think she'd be back at school to start GCSES in Sept.

When I was dx, many years ago, my cousins Dh looked at me with utter disdain and said
"Oh, that's the illness that ps all in the mind, isn't it?"
I was only 18 and had no idea how to reply so I didn't.
Fast forward a few years and one of his wider family members was dx with it.
By then his attitude had changed...and I got a lecture on what a terrible illness it is!
Some people are cunts, and like ME, there is no cure for that.

I think part of the trouble is that it's a bit like the cold vs flu saga. Lots of people 'have CFS/ME' but what they actually have is some post viral fatigue or malaise. True CFS/ME is utterly debilitating and affects life completely for months and years. But because so many people 'have CFS/ME' and simply need an early night now and then, it's altered perceptions of the illness.

So many people 'have flu' yet still go to work. Or 'have flu' and take one day off sick. The people I see in ICU 'HAVE FLU' and end up ventilated, transferring to specialist hospitals for ECMO treatment, have tracheostomies, need extensive weaning programmes, rehab....that's FLU.

Perhaps your friends think that if it was really bad you'd be picking up the phone? I see FB as a very low key 'catching the breeze' style of communication. I certainly wouldn't expect something important to be communicated that way.

Should clarify (if it makes any difference) the day-to-day life post was written by me about specifically what it's like for DD. So not a general 'like and share' post.

Some of the comments underneath were:
Wow, so thought-provoking.
It definitely makes you understand what you're all going through.
Thanks. It makes it easier to understand. So hard for you all.
So hard for [DD] especially at her age.
Lots of love.
Thinking of you.
Such a difficult illness.

So it is really very clear. But that's just Facebook and this is happening in RL too.

One godparent sent a lovely card and some little presents for DD. One hasn't responded to an email or reacted on FB, the other was the one who took a week to reply two months ago.

There are other friends who haven't reacted on FB or been in touch but I know that it's not reflective of our friendship. Hard to explain but I'm not judging everyone based on how they behave on FB.

I wouldn't reply on FB. Firstly, I dip in and out, so probably wouldn't even see it. Secondly, I tend to read but never write. Thirdly, I'm also a bit squeamish about replying to posts because it's just not a media I'm comfortable with - I would worry that anything I posted would immediately be trivialised and rendered trite by the form itself. I'm sure that one of your friends, at least, shares that worry. I do realise that this is not the same for everyone: so much depends on a person's own use/relationship with social media.

The situation with your daughter must be exhausting, stressful and emotionally devastating.

While I'm not sure I would wholly discount those friends who have not responded, I would agree that focusing your energies elsewhere is a good plan.

I wish you the best for a good recovery for your daughter, and wish you the strength to cope with the coming years.

Sometimes people don't know what to say, but if you ask them to do something, they may respond, whether that's something practical to help you, or to fundraise for one of the current UK research projects.

The friend who DM'd you: it probably came up on her feed because she's interested in that sort of thing so it filtered in to hers.

The thing is, you're sharing them with sincere motives, but the vast majority of that kind of post actually originates from clickbait spam botters who are just sharing to get clicks and likes on spammy advertising pages and are normally exploiting the fact that they know some people will have relatives or be suffering themselves so will share it which is what they rely on to send it viral. So, for example, if 3,000 like the original post, then they have 3,000 active accounts to spam with Ray Ban sale ads.

So even though you're sharing it with the best of intentions, the algorithms treat it as spam and filter it out unless someone has activity which shows an interest which will filter it back in again.

Although it's not spam to you, it was probably created and shared as spam, so it gets treated as such when FB is filtering it.

You see, it's horses for courses when it comes to FB. I would hate to receive some of the responses you've listed. I'd read them as commenting on my writing and communication skills, rather than being truly empathetic. But that is probably because I experience FB as a very mediated form of communication and wouldn't use it myself to discuss something like an illness in the family - indeed, I haven't: we have an ongoing situation at home, and I wouldn't/haven't posted on FB about it.

People really do respond to FB in all sorts of ways. People respond to information/events in all sorts of ways. Some people may be poor at replying in writing to news of something as awful as this but may be quite good at practical help/empathy in 1:1 situations.

Having said all that, however you choose to respond is up to you. You are quite right: you only have so much emotional bandwidth and you need to cut back on whatever you find to be redundant.

The only reason I posted this is because you seem to be angry at this perceived indifference on the part of some friends. I feel that interpreting their response this way is perhaps causing you unnecessary pain. They may truly love you (and your daughter) and feel concern. Their silence may not arise from indifference; it may result from something altogether different. I'm not sure that interpreting this in a way that makes you feel uncared for is going to make you feel stronger, happier, more able to cope - or is, in fact, correct.

I don't react to any of those fb posts. Never would. Although I don't have many friends I do seem to get a few that post any of those types, but when one does several repost it and I see it multiple times. I don't even post on the ones that effect my dc.
I would respond as your friend did with "I saw your dd had it,, my dc had it, can I offer reassurance" type, but I do that on here to strangers, and on other message boards/HV phones me etc. So I wouldn't mark that as a particular measure of friendship, more comradery.

The text is a bit poor, I would have responded quicker, I hope. However you do occasionally get texts missed-my dc check and say "ooh you've had a text from Aunty Caroline asking " and I think, when I get home/finished the washing up etc I'll send a detailed reply. And then I forget because it's not showing up as unread.

And with ME I do know it can be devastating. My Godmother had it for 20 years. My dm worked with someone whose dd was so bad that she had days where she answered questions tapping once for yes, twice for no because speaking was too much effort. But I've also come across people who say "oh yes, I've got ME" and they are, to the external eye, living life as much as anyone else. I'm sure that's a pose and they suffer behind closed doors, but to someone who hasn't known how bad it can be, that's probably their experience. Have you had the delightful comment "I feel tired too" (often followed by "but I have to carry on")? Which my godmother had frequently.

Was the fb post your own "day in the life" or a generic one? Because a generic one can sound contrived, or people feel that it'll be showing the worst, and they saw your dd outside yesterday so of course she's nothing like as bad etc.. A personal one is much more effective for people to resond to.

YANBU. for you and your DD.

I'm sorry to be a bit negative, but I was diagnosed at 14 and the consultant said I should expect to recover by the time I was 16. I didn't (27 now) and I felt like such a failure that I didn't get better. I remember always telling my friends "I only have 2 more years of this", and when I got to that magic number and felt worse than ever, it was devastating and very hard to cope with and accept. I was in denial, and pushed myself so hard I had quite a severe relapse.

I really hope your dd does get well very soon, but just be wary that with M.E there really is no way to tell. On the other hand, after 4 years my dh is nearly fully recovered from it, so there is always hope.

I think 'liking' it on FB would be really crass.

If I read a post like that I'd sympathise hugely but I'd also feel really uncomfortable with a 14 year olds private medical condition and day to day struggles being laid out on the Internet so I wouldn't say anything about it at all because I wouldn't want to further upset a friend they're already going through a tough time.

Maybe some of your FB friends feel that way?. Sorry OP

Yeah, stick with your original analysis - she's not really a friend, or that caring a person. Some people just don't have empathy. Some people choose not to believe in what they consider to be "made up" conditions, and even when you post how awful her life is with ME, they'll still just think "she'd probably be fine if she'd just pull herself together and her mother's just facilitating all this attention-seeking".

So, just choose to let it go. In fact, downgrade her on your FB to "acquaintance"; or even put her on a list that can't see your posts. I have a few acquaintances on FB that don't see my posts, mostly because I'm too cowardly to de-friend them!

Sorry that your DD is doing it so tough

x-post

Thanks all.

Funnily enough I don't have many FB friends as I'm quite choosy about who I friend on there and don't want my life open to every Tom, Dick and Harry. So I did feel they were good quality friends IYSWIM and maybe that's why I feel as I do?

I can see how it would look sharing DD's medical condition on social media. But it was in the spirit of raising awareness for ME, particularly in young people and I explained that in the post on FB so it didn't look 'wrong' or betraying a confidence.

Sorry to hear about your experience Crafty. I know it can take longer and I'm trying not to focus on that 2 year mark. Originally I had read that 60-80% of young people with ME recover in 6 months. But we're in 4 months in and there's been no improvement so I had to let that hope go. It was very painful and emotional so I'm aware of the dangers of focussing on 2 years.

I get what a PP says about algorithms but I had a friend PM me as she'd seen that DD had ME and her DS had had it. We've not seen each other for over 20 years but it came up on her FB feed.

Not to nit pick, but if your friend's son has it, then she will probably read and post about it more than most, so she will be more likely to have your daughter's news come up on her feed rather than less. Not that I am defending friends who are being useless, but I really wouldn't use Facebook as a way to decide whether they are or not.
I hope that your family have enough support to make things easier for you and best wishes to you and your daughter.

I think a lot of people don't understand CFS and there is still a lot of misinformation out there. It doesn't help that for years it was seen as a sort of malingerers 'illness' and was referred to as 'yuppie flu' and other derogatory things. Plus, many people are just very uninformed about anything that hasn't touched their lives - or even if it has they can still be very hazy on what something is, how it affects people, how long it lasts, etc. And people's lives are busy. We must all know people who are ill - my DSis, for instance, has a chronic back condition. Do I email her regularly and ask how she is? No, I don't, because I'm busy and I forget. I doubt its malicious in most cases - just that people have a lot going on and don't always remember.

Plus, with regard to FB, since people's lack of reaction to your posts on FB seem to be a major source of upset for you - I see stuff on FB all the time and don't react to it. Half the time I don't see things anyway, as they roll off the news feed within about 24 hours unless people keep commenting and keep them at the top. Some people live on FB, but many others don't.