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

[InvisibleThough]

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?

I have an invisible condition too - people don’t ask because they have busy life’s. I tell them when I’m having a bad week as I call it so they know and have awareness.

When I had cancer I asked people not to ask how I was because I was as fed up with talking about it as they were of hearing about it.
People know you have health issues so what do you want them to ask about? At the moment I have a broken wrist and kneecap (I'm old, I fell🙄) and while I'm not in much pain I'm very frustrated at my weakness and wouldn't bore anyone else with that fact. I'm not brave, just realistic.

I don't like the idea that people with chronic illness or disabilities must be more brave than others. Most people would have the occasional moan about their health or whatever without it being said that that defined them. Of course having a very negative outlook and talking about your problems too much is not good socially for anyone. But what I mean is people with disabilities shouldn't have to be more positive than other people.

I don't tend to ask people about their ongoing health issues and take the view that if there is any changes you'll tell me if you want to. I do ask after results of tests etc if appointments are mentioned.

I lived with someone who claimed to have ME, and while I don't doubt its existence, I totally doubt that she had it.

She was an attention seeker who continually whined about ME and how ill/tired she was. But if I came home unexpectedly I'd find her busy doing stuff she usually claimed she'd never have the energy for.

I lived with her (flatshare) for a year and having never doubted that ME was 'real', that made me realise that my god, not everyone who says they have it, has it.

Sorry, controversial thing to say, but this girl was SO attention seeking and self-pitying day in, day out, it drove all of us mad.

So maybe there are plenty like her who've made others a bit suspect.

Sympathies OP x

I don’t ask questions like this. My DD has additional needs and I don’t like answering questions about her condition so I presume that other people are the same. I might ask you about test results or specific appointment if you are mentioned them, but in general I would expect you to take the lead when you feel you can trust me.

I think some illnesses are more stigmatized than others, and that tends to shut people up more than if it's a 'talked about' illness. I find people chat a lot about migraines, but don't ask about epilepsy or ME or some other disorders. It's harder to ask about mental health than asking about an operation/physical illness, for example, and ME is a classic illness which has been much debated/contested and so people tend to shy away from that (even I am not sure what to ask/whether to mention it with the people I know), whereas if you have cancer people will ask about it a lot in my experience as a way of showing they care.

It could be because as someone said earlier, it’s part of you now.
I’ve been suffering with anxiety and depression. My close friends know. They rarely ask how I am and I’m very relieved not to have to talk about it. It’s only a part of me and tbh I know it is very dull for me to talk to other people about. Only my dh knows how bad things can be because tbh I think he’s the only person who is really interested (and I’m sure even he would lose interest if I wanted to talk bout it all the time!)

My theory is, with my friends, they think if I want to talk about it then I will bring it up (which is the case). It’s a bit like some friends of mine who bemoan their Parents/in law never having their children to stay. I ask, ‘have you asked them?’ And they say ‘you’d think they’d offer to have them...’ REALLY? I have great family who would always have my children if I asked them to but they don’t ring and ask to have them! They know I’ll ask if I need them.

If people asked you and you said ‘not great’ what would you want from them then. A few sympathetic murmurings then on to the next topic?
If it’s not something which could kill you and not something you are not going to just stop having then it’s just the norm for you and them (as your friends).

Sorry you have this chronic condition and I hope you understand why your friends don’t ask about it.

My dad has ME and my best friend CFS. I ask maybe once a year because of this:

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.

@wafflyversatile

I can't think if a more boring question then people asking about my illnesses but then am not ill often. Why do you want people to talk about it. Seems a bit odd

Snippy and sneery comments like Lethal Drizzles are less than helpful. MN is clearly not the place to come with these difficulties. Time for me to de-register methinks.

Thanks for those who did try to offer more clarity with sympathy, though I did have to wade through alot of crap about mental illness and narcissism and making-it-up . And all the boneheads and assholes, well you know who you are, though then again your self-righteous judgmental demeanour you probably haven't a clue. Still you could stand by the radiator - you never know it might give your heart a quick start.

to all those struggling with illnesses and wishing they had a bit more empathy from those who profess to be their friends (or family).

Orchid I find cancer tends to get treated differently to most illnesses. People tend to be more compassionate and caring than just about any other illness.

Lethal Drizzle is renowned for being snippy. Ignore

Plus, when you are chronically ill/disabled, it's quite often that illness is the only thing in your life, and it's cathartic to talk about it. Luckily, most friends would understand that, even if it was "boring".

When you have a chronic condition, it becomes your new normal. Sometimes the best people who understand the condition (& everything that goes along with it) are other people who have the same, so basically, strangers on internet groups & forums.
Doesn’t mean that your friends are family don’t care, they’re probably just taking their cue from you as to whether you want to talk about it.

OP I know exactly where you are coming from I find when I do talk about my illness, it's met with silence at times and that is really hard. My only very real support is my mum as well x

People virtually NEVER ask me how I am (alluding to my health) or how my condition affects me etc etc

Perhaps because they are waiting for you to bring it up?

If I am hanging out with a friend we'll usually open the conversation with "How are you?", "How's it going?" Or "What's new?"

It isn't a specific question as to their health or any issues they might have but it is the opportunity for them to bring up whatever they want to talk about - their health, issues with their kids/DP/family, work etc - and we will then progress the conversation from there. If they have a specific issue - such as a chronic health condition- and they don't mention it during that opening parlay then I assume they don't want to talk about it and will not mention it until they bring it up.

I have anxiety and depression and have been diagnosed and on antidepressants to control it since I was a teenager. It is something I deal with on a daily basis but I never get directly asked about it and I prefer it that way.

I have a therapist that I have regular sessions with to deal with my MH issues, I prefer not to have catch ups with friends turn into a therapy session (partly because it makes me uncomfortable to talk about my MH all the time and partly because I don't want my friends to feel the burden of dealing with my MH issues) but I know that if I was having a particularly bad day then I could bring it up.

I think because we don't usually talk about my MH issues I feel comfortable "using" my friends as an outlet on the rare occasions I need to talk about it. I also find my friends are super supportive on those rare occasions because they know that if I am bringing it up then it is something that is really bothering me because of the fact I don't usually bring it up. If they were constantly having to support my MH issues every time we met up I could imagine it would be very exhausting (it's exhausting enough living it) and I wouldn't want them to get burnt out and start withdrawing from the friendship.

MrsSchadenfreude

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." grin

This! I was close to dying and this was how I answered everything question!

Perhaps it's cultural, but I never really considered telling the truth. When people ask 'How are you?' they don't really want the truthful answer.

*every not everything

I'm sorry OP. Of course your friends should ask how your illness is. It's part of being a friend.

Im amazed so many posters are finding so many reasons why you wouldn't do this.

You deserve friends who are there through the bad as well as the good, who don't think of their 'boredom' (wtf?) above your need to be supported in a horrible time.

LethalDrizzle Having a chronic illness, especially a highly stigmatised one like ME/CFS is very isolating and very few people understand. It is natural to maybe want support from friends.

I had ME for some years (recovered now) and lost friends due to it- they simply refused to believe me. I did not go on and on about it but if I ever had to tell them I could not do things due to pain or exhaustion or foggy brain they would sigh and say "you always ill. stop being so negative all the time." I was very fortunate to have a Dr who believed in me- many are less fortunate.

I have a chronic illness and it really stresses me out when people ask how I am.

@HeAteAFatball how did you recover?

Why would you expect people to do that? It really is not a done thing, it is really private and a conversion you would iniate yourself with people you feel close enough to discuss it with. This is why people find questions about pregnancy really invasive for example because generally you don't go round asking people to discuss the bodies and private medical info. Therefore yabu

Sorry you're having a rubbish time.

To me, when friends see each other they will say 'how are you?' And at that point the person being asked can say 'great' or they can say 'pretty rubbish at the moment. This is getting me down' or anything in between. If you don't mention it then it's a bit much to expect your friends to be psychic and know to ask you specifically about your illness.

The whole 'how are you' almost always being responded to with 'fine thanks' is for small talk, work chatter etc, not when you're catching up with friends.
E.g. if I asked a friend how she was doing and she started telling me that her and DH had a row then that's appropriate. If I'm in the staff room.at break and Trish who I hardly know started telling me about her material problems, ingrown toenail etc then that's not.

*marital