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 find this too op and I have fibromyalgia and am undergoing tests for MS.
I'm 40 and have been like this since I was 27.

My dad says to me every day " and today's illness is????? " it really upsets me.

I have fibro too and my DH is like that, Zoflora. When I wake in the morning he often says "let's have today's list of problems then, shall we?" Really makes me want to stab him.

What secretsquirrel and lordofthefleas said - how do you answer when people do ask? Because I hate having to do the 'no change, still ill, yes, still in pain, no cure' dance when I see people.

I don't want to answer honestly, because then I'd have to think about it. And I spend a lot of time and effort ignoring my body as much as possible, because of I think about it - if I let myself feel all the pain and fatigue and all the lack of treatment - I'm going to bed and not getting up again

So, what do you want from people?

Generally: I only ask if I know the person is OK with talking about their illness

ME specifically: I only know one person with it (or so she claims) and she is a narcissistic nightmare who causes no end of trouble for her colleagues. I don't want to talk to her about anything, including her health.

If I met someone else with ME who was nice, I would absolutely ask how they are.

I have a LOT of health issues (listing would be outing as some are v rare) and CFS is one of them.

Some people ask how I am just as a greeting. I know that about them, so I usually just say "Not bad, thanks!"

Others, a couple of more sensitive work colleagues in particular, I am more able to say "I'm feeling rubbish today". Likewise, I'll ask them how they are and they'll tell me too.

Some friends ask after my specific condition that I've been having a lot of operations for. If it's someone who genuinely cares or knows what I've been through, I'll be honest. Others I'll say "Ok for now!" If I am, or "Still having the same issues." If not. And then I usually change the subject. I worry a lot I'm bring a terrible bore otherwise, even if they're asking questions!

My CFS is so far down the list now, I don't mention it. I think only a few friends and acquaintances know I have it. I don't tell work as my other issues cover the fatigue element.

I get through a hell of a lot in a day with all my stuff, but have friends with CFS who as a PP said, let it define their lives. One friend in particular will always caveat our arrangements by saying she might not make it if she needs to rest from the day befores activity. Last time she said it I told her I understood that, it should be a given for both of us. She replied she didn't think i needed to rest as much as her! Just getting it in there that she thinks she's worse than me and wants me to know it. I deliberately haven't seen her in months, even though if you catch her on a good day she's great. Thinking about it now, I always start my messages asking after her health, she rarely asks me!

I think there’s maybe a cross over between CFS and mental health issues. Maybe in some people the stress of dealing with CFS triggers mental health issues. And maybe some people with mental issues are attracted to the notion of having CFS.

Either way it still sucks for those folk. But they do tend to be difficult to cope with. And maybe the prevalence of folk like them lead to prejudice against all those with CFS?

Hmmm

I've had type 1 diabetes since 2001. Nobody ever asks me how I am and I love it tbh. I have diabetes, there's no more to tell. Any query about it can be answered by google.

My DH has chronic sarcoidosis. Nobody asks him either.

I agree with waffly in terms of an explanation : its not "news".

I don't necessarily agree that it makes it ok - in your shoes I'd also appreciate being asked specifically about it every now and again (like you said - once a year would do!)

OP I'm sorry, you sound so down.

Long term life changing chronic conditions, also, due to head injury.
I look "ok". I had to give up a profession I loved. I never discuss it, and there are no local groups to be involved in for a bit of mutual aid.

" Doing ok thanks" is my reply, on the extremely rare occasion anyone asks. I can't even cross a road without assistance.

Husband is a gem, and I recognise how tough it is being a carer. No one ever asks how HE is doing.

Adult daughter is of the "what's wrong with you today" variety.
She bought me a fecking cushion for my significant birthday.

It's pretty lonely having invisible disabilities, or being a carer.

I like to think I’m quite sympathetic but I tend not to ask about illnesses unless I definitely know the person would want to talk. I feel like asking might make them feel like I’m defining them by their illness and I trust that if they want to talk they’ll bring it up.

Almost everyone I know has an illness or various illnesses (most of these are “invisible” if that’s relevant) and I tend to be cautious and not ask unless it’s clear that they want to talk.

I’ve had fibromyalgia (among other things) for over 15 years and the only time I get asked about it is when my sister in law who has it as well asks me maybe once a year. Even then I’m a bit taken aback and just say “you know how it is” as I don’t really want to talk about it. 😅Maybe your friends are just being polite? If you said “my ME is really getting me down and I have no one to talk to”, they may well be happy to listen. 😊

I don’t know many people who aren’t ill in one way or another!

I think with most chronic / long term conditions people stop asking because, what more is there to say?
And unfortunately as others have said sometimes ME in particular can overcome the person so it can be all they want to talk about.

Do people honestly never say, hi, how are you? If they do, then be honest and say well mate not too good!

Few people ask me about my chronic pain condition. A few good friends have been amazing about offering help and support which is better than enquiries but most say nothing much at all.

YANBU, I know CFS sufferers hardly get any sympathy at all let alone practical help.

I think you are being a bit unfair on your friends. If you yourself say you don't talk about it much - I'm guessing they are assuming you don't want to focus on it. If they did not want to be your friends than I'm sure they would have dissolved the relationship by now. Ilness can be a bit life grief - people react individually and now its tricky to know how other people want you to be around them.

How are you OP?

I am dubious about CFS due to Having a friend who believes she has it. She doesn’t , but she’s so convinced she has it she even convinced her Dr’s. The reason I know this is because aside from knowing her for 20 years, going through various ‘illnesses’ with her, lots of hospital scans etc for many things (always fine)when she was signed off work with CFS she managed to use the 12 months she was off work to renovate her house (she did a lot of it herself , up and down ladders and lifting heavy things)and go on multiple holidays. Yet she couldn’t sit in a car for 20 minutes to get to work ..

I wouldn’t like to be asked if I had a long term condition and so I don’t tend to ask others. I also don’t like to ask about friends’ having cancer treatment or similar. I do care but I don’t want to keep bringing it up like it defines them as a person. I was brought up by parents who considered these topics “private” and not for discussion though.

@InvisibleThough

I am sorry you feel a bit hurt that people don't ask you how you are and how your condition affects you, but to be frank, many people have issues and problems of their own, (health issues and other issues, like financial problems, relationship problems, and also work problems.) So maybe they have their own battles to fight.

To want to know why people are not asking about you makes you seem a little egocentric and self absorbed. Maybe you are not meaning to be like this, (and I am sure you are not,) but it comes across that way from you posts. 'why aren't people asking me how I am? What about meeeee?'

Sorry if that sounds rude, but to be honest, I have very little time people who act like they are the only ones suffering. Many people suffer - health issues AND other problems in life, and never speak of it. So don't assume because other people don't moan, that their lives are perfect. Most people have a story to tell, and many people struggle day to day with health issues and lots of other issues that you don't know about.

@InvisibleThough

I am sorry you feel a bit hurt that people don't ask you how you are and how your condition affects you, but to be frank, many people have issues and problems of their own, (health issues and other issues, like financial problems, relationship problems, and also work problems.) So maybe they have their own battles to fight.

To want to know why people are not asking about you makes you seem a little egocentric and self absorbed. Maybe you are not meaning to be like this, (and I am sure you are not,) but it comes across that way from you posts. 'why aren't people asking me how I am? What about meeeee?'

Sorry if that sounds rude, but to be honest, I have very little time for people who act like they are the only ones suffering. Many people suffer - health issues AND other problems in life, and never speak of it. So don't assume because other people don't moan, that their lives are perfect. Most people have a story to tell, and many people struggle day to day with health issues and lots of other issues that you don't know about.

You can always bring up the subject yourself if you want to talk about it. Then see how people react, you may be pleasantly surprised.

"My ME is particularly bad at the moment, it's really getting me down"

You didn't really answer the question posed above...

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!

There's exactly the thing; if you want to tell someone you're struggling, the point at which to do it is when they ask how you are. If they never ask how you are, then you have to question whether they're your friend at all.

With a chronic condition it’s long term, maybe they understand that you’re always going to have it and it’s not as though you’re suddenly magically going to get better. Perhaps they understand what is typical for you, and assume that you’d say “actually, I’m having a bad week” the same as anyone else would.

But why do you need people to specifically mention your illness? Do you want to be defined by it?

I don't ask anyone about their illnesses. Everyone has something going on and most people prefer to just get on with it.

People don't know how to relate to hidden illnesses, equally life does go on. I have two hidden illnesses. I don't expect people to ask though. I don't want them defining me.

I have a very visible disability I get asked alot but i do ask everyone but one person how they are. I don't ask them because they use a sick voice when talking about their health and never once have they asked how I am after major life changing surgery because it's not about them.