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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

to wonder why people never ask after my health (ME/CFS)

75 replies

InvisibleThough · 29/09/2018 13:08

I've had ME for about 10 years. Pretty ill a lot of the time, can't work because of the terrible pain, fatigue, etc. I do just about manage to keep a couple of friendships and acquaintances going, and occasional social activity. But one thing I notice.

People virtually NEVER ask me how I am (alluding to my health) or how my condition affects me etc etc. I don't complain about my illness and don't really mention it - though I might say I can't do "x" because of my health (no-one ever sympathises !) but thats about it.

I can't imagine having a friend or friendly acquaintance who has such an illness and actually never asking them how they are. I'm not talking about every time you see them etc. But maybe once a year or so ? The only person who ever honestly enquires after my health, or who seems to care at all - is my mother. And we don't even have a particularly close relationship!

Is it just an ME/CFS thing?

Is it just the "invisible" illness thing? e.g. I'm not going round on crutches.

Is it just me?

I know a fair number of people with health conditions and disabilites and people are often asking how they are. And I am often one of those people who are asking!

I'm just thinking this morning (to myself) people don't really care about me ....

Am I wrong? Wondered if I am missing something here?

OP posts:

AnneOfCleavage · 29/09/2018 13:21

It may be that they don't want to inadvertently say the wrong thing. I know my Dsis always said she didn't want her cfs to define her so friends never mentioned it and just breezily talked about other things so could your friends think that you could be similar?

Also people are afraid of the answer to "How are you?" as it wouldn't be a breezy "Fine, how are you?" in their eyes and they could be caught not knowing what to say.

It's such a hard one. You could just say jokily "Thanks for asking how I am, and fyi it's been tough coz of abc..." and see how they answer. Or just frankly say to them that you feel hurt they never ask how you're doing despite them knowing you have MS and CFS.

curlykaren · 29/09/2018 13:23

YANBU. I've had people tell me how lucky i am to have a blue badge! I think society in general is ignorant of hidden disability..

Lethaldrizzle · 29/09/2018 13:26

I don't generally ask about illness unless it's cancer

Powerbunting · 29/09/2018 13:28

What do you want them to ask? What do you want to tell them?

It is all illnesses. We get frightened by confronting them

Caselgarcia · 29/09/2018 13:29

I must admit I won't ask about illness either as I worry that some people don't want to talk about it.

MrsSchadenfreude · 29/09/2018 13:30

I was taught as a child that there is only one acceptable response to the question "How are you?" and that is "Fine, thank you."

But perhaps a) they are not interested b) they worry that you will go on and on about your illness and they will be there all night c) they don't believe it exists d) they think you probably don't want to talk about it.

My cousin had cancer and was undergoing some pretty hideous treatment, both chemo and radiotherapy. If you ever asked him how he was, he would say "Oh the chemo isn't too bad, but the radiotherapy can be a bit gruelling at times." Because he knew that people didn't want to hear the full horrors of the treatment.

MrBeansXmasTurkey · 29/09/2018 13:31

Going by the fact no-one ever sympathises that you can't do certain things you may just have some unsympathetic friends. I'm not saying they don't care about you at all but they may be a little self centred.

ShatnersBassoon · 29/09/2018 13:32

They're taking your lead. You don't mention it, so they don't.

OddBoots · 29/09/2018 13:34

I am not sure it is all about it being invisible (although I am sure that is a factor) but it is also because it is chronic.

I have spent prolonged times needing a wheelchair and/or walking frame and after the first questions people just took it to be part of my identity.

Likewise I have family and friends with visual impairment needing a white stick and various magnifiers and others with COPD using oxygen and people don't talk about that either.

Original poster

InvisibleThough · 29/09/2018 13:34

I'm not the type to "go on and on", for sure. And I think thats obvious if you knew me. I wouldn't expect people to be asking all the time either.

But I have a couple of friends who have never asked or shown any interest or sympathy at all. I don't know if its because they haven't got any or because they prefer not to express it. I just can't imagine never enquiring when someone has such an illness. Anyway, its interesting to see what people think.

OP posts:

Secretsquirrel101 · 29/09/2018 13:34

Sounds great. I have hypermobile ehlers danlos syndrome and CFS and am sick to death of people asking me about it, because they inevitably follow up their questions with something inane and unhelpful (have you tried xyz etc). If they just never asked, that would be wonderful.

RachaelGeller · 29/09/2018 13:37

Don’t your friends ever ask ‘how are you?’ Because that’s your cue to tell them how you are, health is part of that!

RachaelGeller · 29/09/2018 13:38

But when it’s very long term, people stop asking as there’s usually very little additional info to discuss. I’ve had a chronic health issue for thirteen years and my friends as a whole ask after my bladder maybe once per year if that. That’s totally fine with me, if something changed or it was bothering me enough to need to discuss it the onus is on me to raise it.

Original poster

InvisibleThough · 29/09/2018 13:40

Maybe MrBeans has a point. One friendship did end, actually in an indirect way around the issue of my health. I don't think she did care.

Perhaps others aren't so uncaring, but they have busy lives, their own problems, etc. and so its just something I have to accept. It would be nice though if I could share occasionally, or someone ask occasionally.

OP posts:

wafflyversatile · 29/09/2018 13:40

Perhaps because it is chronic enduring and fluctuates but doesn't necessarily get progressively worse but doesn't generally get better?

If someone has the cold you might ask how they are a week later checking that they are better or if it's developed into a chest infection etc. But if someone has a leg amputated once their life has settled into a new normal you wouldn't keep asking how they are getting on without it.

ME is your normal. It's not news I guess.

Original poster

InvisibleThough · 29/09/2018 13:42

Maybe Rachael also a point, I don't take my "cue" enough. Perhaps its because I get zero so little sympathy or understanding - I simply don't bother anymore ... that has suddenly occurred to me ...

OP posts:

stolemyusername · 29/09/2018 13:44

I have a long term illness/disability and have had it for 4 years now. People don't ask anymore as I guess it's just become part of who I am now.

There's an excellent lady on Facebook with CFS/ME that I follow, her blog is called tryingtodoitall if you're interested

wafflyversatile · 29/09/2018 13:44

Re some friends do x and some do y. People are who they are. Some friends are good for going out with, some are good for salacious gossip, some have a sympathetic ear etc. Not all friends are good for every friendship role.

Aridane · 29/09/2018 13:44

I think waffly May have it

Digggers · 29/09/2018 13:45

I think some folk think that ME/CFS is a made up condition.

I don’t.

But I do have a tiresome acquaintance who is an attention seeking hypochondriac who is continually going on about having ME, when they din’t Really seem to.

I guess it’s possible they do. But the general consensus throughout their friends and family is that it’s attention seeking/mental illness. So i’m Afraid I don’t generally ask them about it, as I don’t want to get stuck in a long conversation about it feeling increasingly uncomfortable at being made to sympathise about something that doesn’t feel genuine.

Maybe there’s people who genuinely have ME/CFS and people who genuinely think they do (due to mental illness ) and people who pretend they do ( again due to mental illness). And maybe your friends have had their fingers burnt with the latter two and have cast you in the same light?

Unfair certainly. And actually unfair to the latter two too, as mental illness is still an illness.

I think too that chronic illness makes people feel very uncomfortable. I have a chronic illness and people never ask about it, and if it does come up then people generally want to end the conversation quickly on a positive or helpful note. Ie “ have you tried giving up dairy?” Or “ my aunt had that, she swears by lemon juice and got lots better” or anything but acknowledge how shitty long term chronic illness is.

Hugs to you x

Aridane · 29/09/2018 13:45

(in her 13:40 post)

LordOfTheFleas · 29/09/2018 13:51

I have a chronic condition and I hate being asked about it, it's always the same answer or would be if I were to give the truthful answer.
I have a friend who I've started to avoid a bit because her health problems are all she goes on about, constantly and it's very tedious. I don't know what to reply except for, "I'm sorry" or "That must be tough."
Sometimes I think of telling her how I'm knackered and in pain every day but I just don't bang on about it but I never do. Most people have no idea and I'd like to keep it that way as long as I can.

FanciedAChangeToday · 29/09/2018 13:58

Having had CFS since it was called Yuppie Flu in the 80s I can tell you one reason - because a lot of people with it are utter bores. I never tell anyone "oh I have it too" if they bring it up, until I get to know them and know whether it defines their whole life or whether they carry on as normal as possible until an episode causes a setback.

abacucat · 29/09/2018 14:00

This is the same IMO for any ongoing health condition, not just ME.

ProfessorMoody · 29/09/2018 14:17

I've lost 99% of friends since I started using a wheelchair. I'm just too inconvenient for them. They never bothered to ask how I was - I think partly because they were uncomfortable talking about it and partly because they don't really give a fuck. Illness and disabilities are very isolating.

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