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

[LemonDifficult]

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'?

And do you think your behaviour is likely to decrease or increase this stress?

OP, I do not have MH issues. I have never been depressed. Fatigue is a common side effect of diabetes though.

OP, a friend of mine has CFS (although she insists it's referred to as ME, as she things CFS is an insult to the debilitating symptoms which manifest themselves).

From my understanding, many sufferers go on to recover - however she's in the smaller percentage for whom it's a chronic illness that will one day kill her.

I count myself lucky not have a greater understanding of the illness than that. However, I do understand how hard it can be when someone is so self absorbed. She is, however, housebound, and I think she just relishes any rare opportunity to TALK to someone, to say how she feels and get some of it off her chest. It doesn't make her better, but she'd be much worse off without the few friends she has.

I've considered calling time before now, when it's been really hard going, but she's already lost lots of friends. I've realised over time that you have to accept your friends as they are, and we all play a different role in each of our friends' lives. My role in hers is to listen when she needs it, and put myself aside for a bit. It can be hard, but I know I'd regret it if I let my own selfishness get in the way.

One day she won't be here, and I want to be able to say that I stuck with her until the end.

There's no 'behaviour' from me, so I'm not sure what you mean.

I've been completely consistent over the past few years/months.

If you mean coming on to an anonymous forum and airing my issues around it, then I'm hoping she won't know.

Your Dh thinks that the stress she has been under can cause a physical impact. What are the physical impacts then ? What is your dh's view of this ?

Well, heart attack. There's a well known physical impact of stress.

Oddly, I've never heard anyone describe heart failure as a mental illness on the grounds of it being triggered by stress.

Well I think that basically arguing against what a gp has said when you have no medical qualifications and you aren't the one experiencing the symptoms is extremely arrogant.
Whether you have actually said so to your friend or not it will be obvious that you don't think she really has cfs. I wouldn't be surprised if that's the reason why she talks about it so much - because she feels has to convince you.
I have friends with depression. If one of them said their gp thought they had cfs I really couldn't imagine thinking 'I doubt it' as I would be in absolutely no position to make that call. Neither are you and neither is your husband.

I reckon the best thing you can do is come on here and say things to cyberspace it's hard to admit to out loud in RL.

CFS is draining for friends/relatives etc end of doesn't take away from the illness though I have sympathy with the idea that they are making it up as I have a friend that has it and I have wondered sometimes even though I know it is real.... Ah well I'm not a perfect person which is why I like reading mumsnet - anyway

I've been there - though my friend wasn't as close as yours - in the end something was said and we are probably closer as there is no strain on friendship greater than constant negativity I find

Can I ask what she was like before her illness? Was she interested in people around her, did she support you when you were going through difficult times? Because that will tell you whether she is, as you say, just bitter and selfish, or genuinely going through a rough time and needing support.

We have a family member who went through a horrible illness and for a few years, visits would always revolve around his latest medical problems, worries etc. We'd listen, but continue to bring up our own stuff as well, even if he didn't ask. It's easy, I think, to get absorbed in your own life when you suffer from a serious illness and it's good to have friends that take you of that every so often. After a few years, he felt better and he's now starting to return to the person he used to be: genuinely interested in others.

For practical advice, I suggest you start talking about your own life again to rebalance your friendship. Listen to her worries, but don't let it be the only thing you ever talk about. Other than that, leave the medical side and diagnosis to professionals, and just be a friend for moral support.

I had CFS/ME very badly in my twenties. It was a terrifying experience which involved a range of extreme symptoms including chronic pain, changes in vision and hearing, vertigo, extreme memory and cognitive problems and an inability to sleep. I was very depressed after two years of being housebound and not being taken seriously by my GP. i remember well feeling so confused as to why anyone would think I would make my symptoms up, exaggerate them in any way or not jump at any treatment, lifestyle change or strategy that would help. Fortunately times have changed now and whilst there is clearly still a great deal of discrimination, i do believe understanding and support for the illness has improved. That said, i had a friend like you OP who constantly questioned me, belittled my symptoms and pointed to my negativity. I remember making it out of bed for an hour whilst she and a friend came around and describing my frankly awful week to them and she spoke at length about my negative attitude. i am sure that to a healthy twenty year old that was how i came across but I remember being really startled and thinking how much effort it had been to get up for the hour- how much i would pay for it afterwards and how positive i had been throughout the whole week to get myself there at all. OP you really, really do not know what you are talking about. Having had CFS/ME is like having served in a horrendous war or something that noone else has experienced. It is utterly isolating and much, much worse than people imagine. You think it is about being sleepy? You cannot identify with what is happening to her but you should trust her that it is real. i agree with others who have said if you cant do that you should get out of her life because she is at the beginning of a long and painful road and not being believed will make it a lot worse.

grubly I was coming on to say something spookily similar to your post

ME is confusing, painful, terrifying, isolating nightmare. I wouldn't wish it on my worst enemy. And not being believed/people getting bored of you being ill - that's incredibly hurtful when you are already on the floor.

Greensleeves- it saddens me that these attitudes are still so prevalent- but things are changing slowly. I am sorry to hear that you could have written my post and I hope you are well now. All the best x

Maybe there's a forum or support group somewhere where she could vent about her illness and save the best part of herself for her friends?
Or maybe she could do the Sara Ban Breathnach Simple Abundance thing or even keep a journal if she felt all she wanted to do was express her feelings without thinking she had to go all Pollyanna about it.

Having seen a family member go through ME a few years ago and now having a friend with Lou Gehrig's disease, I know it is possible to deal with a horrible illness without alienating all your friends by being full on about it/negative all the time.

The OP hasn't said she thinks her friend is making it up. Thinking someone isn't helping themselves and/or that there is a psychological component is not remotely the same as saying the person isn't really suffering from the symptoms. Asthma is pretty widely recognised as having a psychological component in many cases; it doesn't mean you can turn it on and off at will, or that you can't end up hospitalised from it (or worse).

There seem to be a lot of people identifying with the friend - but surely not all people with CFS/ME/things which a GP might diagnose as CFS are the same? And saying the friend 'doesn't need friends like you' - I wonder if my FIL (now deceased) 'didn't need' a wife like MIL, who cared for him through over 15 years of Parkinsons - because she did talk about him behind his back from time to time; he was a curmudgeonly type who wouldn't accept help (other than from her, which was tough on her - and not always then), wouldn't leave the house, and so on. Sometimes you need to vent. Sometimes the ill person is not being reasonable. Sometimes the fact that a friend is caring for them/listening/whatever is what matters, and not that the friend doesn't always think as he/she should. And it is ridiculous to think that because someone has doubts as to whether a diagnosis is correct or whatever means that those doubts will always show - some people are very transparent, others aren't, and unless you have met the OP you can't know whether she is or not.

I had a friend with CFS years ago. She was very dependent on a small group of friends locally to where she lived (not close to me). They used to get really frustrated because she would massively overdo things on occasion, and then need a lot of support/help afterwards, whereas they felt she should be pacing herself. She felt that for life to be worth living (in her early 20s), she had to be able to live it up from time to time. Both are valid points. On the basis of some of the posts in here, the friends should just have quietly gone along with whatever she wanted without arguing because it was 'worse for her' as the ill person than for them as the support team - but I think that is expecting something very super-human, and am not sure that martyrs would make great friends anyway.

OP, if it is any consolation, I have known people with CFS and/or depression get very self-focussed for a while and then get past that. I hope your friend does too.

Venting is fine. Saying you find it draining is fine. The OP hasn't said her friend is making it up. Just that she thinks the doctor has diagnosed her incorrectly. Which is a massive leap imo considering she has no medical training herself. I fail to see how she can support her friend through cfs when she is (for some reason) adamant she doesn't have it.

I think "newly-diagnosed with anything" can be a very self-focussed period, very naturally.

A friend opened the door to the postman and told him she had cancer. It completely filled every corner of her mind every waking moment (and I'd imagine her sleep) while she came to terms with it.

i had a friend like you OP who constantly questioned me, belittled my symptoms and pointed to my negativity. I remember making it out of bed for an hour whilst she and a friend came around and describing my frankly awful week to them and she spoke at length about my negative attitude.

grubly, I'm afraid you are transferring your awful experience of your friend onto me. I am not your friend and I am not like her. I haven't 'constantly questioned' or 'belittled her symptoms' or 'pointed out her negativity' - although after the advice I have received here I may yet pick her up on that. I have accepted all she has said, listened supportively for hours (actual hours, not figurative ones) and let her sniping wash over me.

My AIBU was whether it was OK to feel pissed off at how she is treating me. I'm pretty certain that I've been a good, loyal, consistent friend so far to her. So as for being 'extremely arrogant' and so on - I understand (better now after these posts) that this is a trigger issue hence the hyperbole, but really my behaviour so far has been reasonable. However, I'm getting pissed off with her, though I strongly doubt she knows, as I hide it and she barely speaks about me anyway.

Like I say i my OP, in the future at what point is it reasonable/unreasonable to call time on her behaviour towards me? And should a reasonable person be more patient? And at what point (if any) can I rightly think 'Take at least some responsibility for your situation'? Never?

She hasn't said the doc has diagnosed her incorrectly, but that she isn't sure if the diagnosis is correct. I don't know where you are getting 'adamant that she doesn't have it' from; that is not how I read her posts. Do you really think it unreasonable to wonder whether the friend would, say, benefit for treatment for depression (which (a) is often comorbid with CFS, and (b) could well have been triggered, if the friend has a susceptibility to depression, by what has apparently been a very tough time)?

She isn't supporting her friend medically; there is no reason to think she can't support her just fine without necessarily being convinced that the diagnosis is the be all and end all of the situation. And there is no reason that the friend even necessarily knows she thinks that.

Just that she thinks the doctor has diagnosed her incorrectly. Which is a massive leap imo considering she has no medical training herself. I fail to see how she can support her friend through cfs when she is (for some reason) adamant she doesn't have it.

Nah, I really didn't say that. That's what you read into it. What I asked - asked - was a hypothetical question. It was:

So if CFS isn't a psychological illness, is it possible that in fact my friend HAS got a MH issue but with the same symptoms as CFS and therefore received the same dx? Perhaps an illness that she could influence?

x-post, dg. (thanks for support )

Not sure there's much she can do about her situation, but her attitude is all up to her imo.

you are welcome, LD :) I don't know if there is an answer to your 'at what point' questions because they are very personal to you and how much you can tolerate and to your relationship with your friend - but if you think it might come out in anger, you need to address it before it does; that would probably be the worst outcome for both of you.

I don't think that realistically you would be able to persuade her that she can help herself though, at this stage; you might be better trying to tailor your support more so that you aren't giving more than you feel able - is that a possibility? eg seeing her when you have another appointment after a certain time, or seeing her less often but sending notes or whatever round so she doesn't think you've abandoned her - or just seeing her less often and see if it bothers her?

LemonDifficult (love the name!) i think you getting fed up with her is good. listening to her is not doing any good.

i had CFS symptoms & was extremely driven to get better. i did not think i could fix myself overnight but i did think i will be the most well person for my level of symptoms.

i exercised when the thought made me cry & i used to cry at the start of cycling. i went to work when it was so painful it was like a dream.

some posters have critised me for this approach but it gave me a sense of purpose, a plan.

can you help your friend develop the right plan for her? you have identified the important things: "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"

LD- I am not transferring anything- what i was trying to point out was that whilst i am sure that my description of my week would have sounded very negative to a healthy twenty year old, to my mind - in the midst of this hellish experience I was having, I was being really positive and forward thinking by getting out of bed at all and i was startled that she saw things so differently. Because when you have severe CFS/ME even having a conversation with a friend for an hour can put you back in bed in pain for a week. And that is why people with ME/CFS can obsess about details - how they are going to get to their music lesson, where they will stay etc. because if something unexpected happens and you have an experience that tips you over the fatigue edge (and this can be anything- bright lights- sitting next to someone wearing perfume or whatever) dude you are fucked. for weeks. and it is very frightening. And for what its worth- i don't blame my twenty year old friend for not understanding such a complicated illness at all- particularly back in those days when people with CFS/ME were openly mocked in the media. Neither am i angry about it anymore- i was trying to help you to see your friends negativity from a different angle- from the context of a CFS/ME sufferer which might help you understand it a little better.

sleepyness with depression

ffs.

You sound like a great friend!