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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

to be exhausted with my friend's Chronic Fatigue Syndrome?

318 replies

LemonDifficult · 04/10/2011 22:33

My friend has been diagnosed with CFS. Over the past 6 months or so she's been struggling with tiredness. She's had blood tests which found nothing, she's looked into herbal medicine and so on. A couple of weeks ago the GP said it's CFS.

During the past few months she has become more and more self absorbed. She is single, she wants to meet someone and have a family and is feeling the pressure as she's in her late 30s. Along with this taking up much of our conversations, she talks constantly about her tiredness, or just other aspects of her life. Almost nothing about me, except on a couple of occasions some bitter digs about how parents are so rude/thoughtless/whatever. I'm sympathetic but beginning to get sick of it. I'm also sad about it because we have been great mates. I try, I really do, but my frustration with her is getting the better of me.

If she was to ask me I'd say I think it's depression or stress by another name with sleepy side-effects, but if I so much as hint at that I get the brush off. In my view, she needs a serious amount of counselling to deal with the trauma of losing both her parents when she was young and various other issues that have come up along the way. She has barely had a proper relationship - the last one was 12 years ago. That the CFS might be in anyway be a MH issue is a non-starter with her.

So AIBU? Is this CFS absolutely out of my friend's hands? And at what point am I allowed to say, 'I've done my duty as a mate and listened to how hard it is not being able to get up until noon. Now I'm fed up with your jellyfish comments about the evils of 'screaming babies' or whatever'?

OP posts:
SexualHarrassmentPandaPop · 05/10/2011 14:12

I really don't think it's your place to be putting cfs lowere in the pecking order than cancer. Cancer can be devestating but my grandad recently had cancer and managed to carry on with day to day life and you wouldn't have even known he was ill. People are ill with cancer and cfs to varying degrees.

thefirstMrsDeVere · 05/10/2011 14:14

I think the OP is relevant to any chronic illness really. Its so tricky. How do we help our friends and family to live with a horrible illness?

It cant be good for the OP's friend to be in this place. I dont think not having a firm diagnosis or any sort of treatment plan can be helping though.

She must be feeling pretty desperate.

ShirleyKnot · 05/10/2011 14:16

Look.

Saying stuff like: "And I can't help but feel: this ISN'T cancer, she COULD do more." is actually displaying a breathtaking ignorance of the illness.

Have you read some of the responses on this thread?

I wonder how chirpy you'd feel if you had such a horrible debilitating condition which ruined the person you once were and the life you once knew.

Original poster
LemonDifficult · 05/10/2011 14:17

There's no order to it, and I wouldn't rate people's illnesses, and anyway psychological illness can kill so not as though I wouldn't take that seriously.

What I meant was, my friend doesn't have the necessary medical experience to carry out chemotherapy. I'm just wondering if she may have the ability to improve her CFS or the negativity that comes with it.

OP posts:
Groovee · 05/10/2011 14:17

CFS and other invisible diseases are very hard to comprehend unless you suffer them. I think your friend probably needs to go on a lifestyle management course where she would learn how to manage things without it getting on top of you. I did one 6 months after being diagnosed with Fibromyalgia. It made a huge difference to how I learned how to cope and deal with my condition and how not to pus myself etc and bring me out of a miserable mindset.

BettyCash · 05/10/2011 14:18

Is there any way we can park the whole debate over whether CFS exists?

The problem is a common one: often people with long-term illnesses, especially 'invisible' ones, are hard to care for.

It's not that the OP doesn't care, or doesn't want to care. She's just tired and maybe a bit thin on patience. And I'm sure a LOT of us understand that. As much as we love the people we care for, we get tired and need support too.

NOW does anyone have anything nice to say.

dickiedavisthunderthighs · 05/10/2011 14:21

This reply has been deleted

Message deleted by Mumsnet.

LadyBeagleEyes · 05/10/2011 14:27

I think people are being very unpleasant on this thread.
I do think you do seem to be doing everything you can for your friend, but there is only so much you can do.
She is ill, yes, but she should also be appreciating your friendship too, it works both ways.

RoobyMyrtle · 05/10/2011 14:35

Your friend is very focussed on her illness as she probably has very little else in her life. Cut her a little slack-It's miserable having ME/CFS. You don't need to diagnose her or give suggestions to her about how she can get better. I hate it when people do tbh. Because of all the crap about it being "yuppie flu" everyone has an opinion about it. No one advises cancer patients about their illness. Why this one? Although many ailments come under the umbrella term. In all the people I've met who suffer from it, including myself, it's an entirely physical illness. Do we get depressed because of it? Well yes sometimes - who bloody wouldn't? Was I depressed before? Not at all! I was a very active, perky person.

I've spent the last 4 years with my doctor trying to push the NHS model of it being all in the mind and get me onto anti-depressants only to find out (after doing my own research and demanding more tests) that it's a problem with my autonomic system. New research has shown that this is probably the case for many ME/CFS sufferers.

Obviously no-one should expect you to be a martyr to your friend. Try changing the subject subtly if she starts going on too long. Taking her out somewhere may be great on a good day and do her some long-term good but don't forget she may be too tired to chat much on the day but be perked up by thinking about it later.

Something my friends do which cheers me up so much is to have a regular cake/natter about once a week. There are 4 or us so if I'm not feeling chatty I can just listen to their conversation and if I'm ok there are enough of them to steer the conversation so my woes don't dominate.

Finally, stop expecting her to "fight" her illness. It's the worst thing you can do. It's only when you stop fighting and learn to accept your limitations and need for proper rest that you actually start coping.

RoobyMyrtle · 05/10/2011 14:39

Well "fuck me" I've just seen your comment about cancer. One of my friends had breast cancer. She has much more energy than me. You have no idea at all. Your friend IS better off without you!

Original poster
LemonDifficult · 05/10/2011 14:40

Er, I don't think I made a comment about breast cancer, I think I repeated someone else's...

OP posts:
WilsonFrickett · 05/10/2011 14:42

It's an incredibly difficult condition to manage and to live with, and it stretched one of my closest friendships because it's hard. But I always knew it was harder for my friend who actually suffered it than it was for me to support and listen about it.

Anyway. Mikel therapy worked wonders for my friend, I was very Hmm because it seemed like a MH approach to what is (in friend and my opinion) a physical illness, but it really helped her.

Original poster
LemonDifficult · 05/10/2011 14:48

Look, I'm really bemused about the breast cancer involvement in this thread.

I'm all up for the CFS/AIBU stuff. But as for the 'fuck you/fuck me' breast cancer stuff - take it away to somewhere else where it might be relevant, cos I'm really certain I don't think it's relevant hear. I was grossed out that dickie thought it was appropriate to draw comparisons with my thread title, but let's leave it at that.

CFS thread, not breast cancer thread, please.

OP posts:
ShirleyKnot · 05/10/2011 14:51

Hang on, I've just GOT to say this...at the risk of being called a frothing foamer.

The point about Breast Cancer was made to try and show you, OP, how unreasonable your threads title is - It wasn't "gross" or inappropriate, well no more gross or inappropriate than your thread title.

Breast cancer is obviously something that troubles you and upsets you in some way, is it difficult to understand that CFS is the same button for others?

lesley33 · 05/10/2011 14:53

"No one advises cancer patients about their illness."

Actually they do. People do offer "advice" about particular diets/foods, particular exercise, being positive and the difference it can make, etc.

People do this because they are trying to help - even if sometimes the advice is totally useless.

And they will do it for CFS and ME just as they do for other illnesses.

dickiedavisthunderthighs · 05/10/2011 14:53

I think WilsonFrickett was referring to this comment

"And I can't help but feel: this ISN'T cancer, she COULD do more."

Original poster
LemonDifficult · 05/10/2011 14:55

No, luckily, I'm one of the few people I know who hasn't been affected by breast cancer.

As it happens, lots of posters have said how tiring it can be supporting someone with CFS. So, I stand by my thread title. It's true in a literal sense.

Unlike the grim breast cancer one which was twisted.

OP posts:
Original poster
LemonDifficult · 05/10/2011 14:56

No, dickie, she mentions breast cancer. I don't.

OP posts:
ShirleyKnot · 05/10/2011 14:59

Nope. Please don't twist it OP.

You were called on your thread title and then said you were just trying to be "witty". Someone else called you on it asking if you'd start a thread about breast cancer with a "witty" "joke" in it.

Nothing grim, inapproriate or gross about that. Sauce for the goose and all that.

ANyway, going on about being exhausted at having to listen to a friend who has CFS is pretty grim IMO.

RunnerHasbeen · 05/10/2011 15:01

Moany, self obsessed people get ill too - I don't think you need to listen to it constantly to be a good friend, what good is it doing either of you? If she is bringing it up endlessly, then it will get boring and it is okay to find it so (anyone bringing the same thing up ad nauseum is boring, be it cancer, their new boyfriend, their child...). This is less about the illness she has than her response to it and it is okay to find that tiresome. I'm not sure you help someone by letting them become defined by the worst thing in their life.

However, is there practical support you can give her - if she is complaining how hard it is to do something in particular, you could offer to help with that (food shopping, tidying her house), treat it in isolation. I would shy away from giving the general advice about therapy, as you are not really qualified and might insult her.

dickiedavisthunderthighs · 05/10/2011 15:02

Sorry, RoobyMyrtle not WF

Original poster
LemonDifficult · 05/10/2011 15:04

ANyway, going on about being exhausted at having to listen to a friend who has CFS is pretty grim IMO.

I'm not twisting it, Yu are though. As you say:

ANyway, going on about being exhausted at having to listen to a friend who has CFS is pretty grim IMO.

So, we would both therefore accept that I am exhausted by my friend's CFS and therefore the thread title is absolutely truthful. I gave it no thought until questioned about it, when I considered it mildly, but tangentially, witty.

And another thing: I'm not 'going on' about my friends illness, except here on this specific thread about my friends illness, where, y'know, the subject is... my friend's illness.

OP posts:
TobyLeWolef · 05/10/2011 15:06

YANBU, OP. I definitely have my doubts about CFS. It's often as if a diagnosis of CFS gives the 'sufferer' an excuse not to carry on doing whatever they were doing before.

Psychological/not psychological. Whatever. But whether or not it's a 'real' thing, it seems to me that so many people just give up.

Dawndonna · 05/10/2011 15:08

I'm not sure it's fair to criticise the friendship here. I look after my disabled husband, it's hard, I've been doing it for years, and most days I do an eighteen hour day. Sometimes I need to talk to someone, have a good moan and say that actually, yes, he can be a bit self absorbed and a bit moany. Maybe the op just needed to have a bit of time out and do just that.

It doesn't make me a bad wife to have a moan and say that I'm tired, bored with it, fed up, whatever, it makes me normal.

Original poster
LemonDifficult · 05/10/2011 15:09

Toby - is there anything that can be done? Do I have to let her? She's still got years to meet someone/better her career/home/life. Do I have to watch her embrace the CFS almost as if it's a relief?

OP posts: