to help me understand friend with chronic fatigue

[dairyfairies]

not goady, I just have noone to ask. I have a friend with chronic fatigue. She is talking about nothing else. Every single conversation is about her condition and how she is exhausted. My friend had to give up work recently as she feels too exhausted all the time. I don't want to cut her off as she has been a good friend in the past but the constant, nearly non-stop talking about her condition is wearing me out (no pun intended).

Does anybody have any advice as to handle it? I know it must be hard to feel constantly tired but she has also good phases e.g. she went to Thailand and Spain last year on holiday, is going out/partying regularly... she has a pretty full on social life with meeting friends, going for lunches, shopping. I know it's probably still much harder energy wise for her to do these than for someone without chronic fatigue but it's not all shit at all time. or maybe it is.

It's just the constant harping on about it. whether we meet, talk on the phone or messages. I just cannot hear it anymore.

For context: I have a severely disabled child for which I had to give up work. My life is shit and tough on so many levels - I don't even get 'breaks' like my friend does (I am not jealous btw). just saying it to make the point that my life isn't exactly a bed of roses but I just have accepted it and don't go harping on about it every time we meet up.

I don't want to lose the friendship but I feel I have to withdraw as I just don't know how to handy the talking about her condition anymore.

any advice is welcome (and yes, I know chronic fatigue is real, I know she is not well, but this is not what I am asking).

Did she self diagnose?

I think it was an exclusion diagnosis. She has seen the GP and hospital doctors multiple times but tests could not find anything physical. She explained it like that. She has been tired for years.

Have a look at the spoon theory- helps me understand friend with cf.

There's a great documentary on Netflix called Unrest, which you would find useful and enlightening.

Have you tried talking to her about how tough things are for you too? Some people are so focused on their own 'woe is me' they truly don't realise that other people struggle too. It might become more equitable if you can both have a moan. If it is that draining to spend time with her I would only do it if you have the energy and try to see other people socially that do not place such an emotional and mental burden if you are coping with so much yourself. I have a disabled husband and child and sometimes just need light and fluffy social time to escape, if she can't do that then maybe minimise contact if you have little reserve left otherwise you will burn out. It is not unkind to set limits in the interest of self preservation.

She's going on about it because all of a sudden she's had a massive, massive change in her physical abilities and it's a huge shock to get used to. With CFS it's not tired as in normal tired, it's different level. Like describing labour pain as "painful" to people who've never felt worse than a paper cut.
Yanbu to not understand because you can't until you've experienced it yourself. Yabu to think she can shuttup about it though. I'd back off and give her space and time tbh.

sandwich, I get it from a pov of energy. I just don't know how to deal with the non stop harping on about it. We talk about nothing else anymore. Every communication I start ends up with her conditition (e.g. me commenting on her new much shorter hair cut - this triggers a response that her hell fell out because of her chronic fatigues so she needed a shorter haircut - it's just everything goes back to her chronic fatigue) That is the bit I am trying to handle but cannot do anymore. I hope this makes sense.

I have a child with moderate CFS/ME (chronic fatigue) and she has zero energy for social life so she doesn’t have one. If she’s not in school, she is literally bed bound. Her school attendance is around 70% so she tries to keep up using a laptop in bed. Sometimes I have to bring her her food on a tray as just going downstairs to the kitchen leaves her with not enough energy to eat.

If your friend has CFS, it is very much on the very very mild end of the spectrum.

I’m a bit surprised that she has no energy to work, but plenty of energy to socialise. Normally CFS sufferers cut out the social stuff first and preserve their energy for school/work and daily self care.

So I feel YANBU in terms of questioning her priorities. She may have CFS and thus not enough energy to work and have a social life, but honestly, if she can do such a full and active social life that energy could equally be spent doing some part time work or getting accommodations for short shifts, rest breaks, homeworking etc.

It might be the only thing she has in her life right now.

If she's only just had to stop work she'll probably be having a bit of an inner crisis over who she is now, especially if she previously defined herself by her role or did a job with social prestige. If that's the case I'd recommend Alain De Bouttain Status Anxiety to her as she enters a new phase of her life.

flask she had it for years. it's not a sudden change that needs processing time. I know that being tired all times must be absolutely shit. I get that. it's the non stop talking.

bananas
anything I say about myself gets shot down. It's 'different' because I am not ill. It all doesn't count if that makes sense.

Do you mean Chronic Fatigue Syndrome?

Maybe she thinks you understand because you have a disabled child and know what it's like to experience something that fundamentally changes your life day to day.

But what's worth remembering is that it's not just fatigue. Your friend will feel often like she has the flu too. This is the effect of doing whatever she's managing to do.

It also fluctuates which is soul destroying to live with. It's cruel how some days you can feel vaguely normal and then others like you want to die. Constantly being shown what you're missing out on and what life was like before illness.

It's also worth pointing out that you only see her on good days. Those times you're not with her, you don't know how she's feeling or living.

Echo a PP saying to watch Unrest on Netflix. It's an eye-opener.

I had CFS/ME in my teens. I had to leave school in year 8 and be home tutored 8 hours a week. Back then people thought it was a made up disorder. I can understand why and I would probably think the same if I hadn’t been in that position myself.

I have a friend who has another ailment and all she does is talk about it. To the point where she is starting to be excluded from things by multiple friendship groups because it’s just tedious.

I have no advice but I am following this post closely as I too would be interested in people’s advice.

Do you mean Chronic Fatigue Syndrome?

yes

If she dismisses anything you say then it's probably healthier for you to put her at arm's length for a while. You don't have the emotional reserves to deal with her level of self absorption. I think it would be different if she was able and willing to empathise with your own difficult and draining situation but that's not the case and I think a little self preservation is required, on your own behalf.

What exactly counts as a full and active social life? Is she able to get out every day or just occasionally?

I don’t suppose she took the decision to give up her job lightly but she may have found it impossible to continue. Any type of job demands a certain amount of mental and physical energy and not many employers are going to keep you on if you have to take a lot of sick leave.

I have CFS and occasionally meet friends, go shopping and so on but most days I don’t leave the house, unless I need to, such as for things to do with my dc. I have to pace and plan everything, if I needed to do something that what have me out of the house for most of the day, I would then have to avoid arranging anyth8ng for the next few days to recover. Ineed to sleep most days and have to spend a lot of time lying down.

And this is with taking a lot of vitamins and supplements, without them I’d be much worse.

pick it's not so much dismissal. it just all gets directed at her. If I say I am tired cause DC didn't sleep at night, then she is tired because of insomnia.

If I say I had a tough day and really did not have time to eat yet, she has nausea which means she cannot eat either.

If I moan that I don't get respite/SS support, she tells me she doesn't get carers coming either. I could go on and on.

To be perfectly honest, I think I'd tell her how it is making you feel. Alternatively cut her out of your life.

I say this as someone with a condition & currently off work because of fatigue. I try not to talk about it too much as I don't want to bore the shit out of anyone. I have a friend with a severely disabled child and I'd never dream of banging on about being tired knowing what she is dealing with.

Friend, I love you but I'm worried that you are only able to talk about being tired and that cant be good for you. I'm going to limit discussing this to once a week/month but the rest of the time we can only talk about happy stuff.

I have MS. MS fatigue is a swine. I can barely lift my arm to reach something. I can't watch telly because it's too exhausting. I have to go to bed immediately and sleep it off. It's not like being very tired. I've had a baby. I know what very tired is. When I have a bout of fatigue, I long for "very tired".
I get regular b12 jabs from the GP. I try to eat healthily hides chocolate biscuit and get good blocks of regular sleep. I can't socialise without big planning around ensuring recovery space and time. Usually I just avoid socialising. Sometimes I amaze myself with what physically stressful or taxing things I can do - and I amaze other people. But it is not a regular occurrence and shouldn't be misconstrued as me faking it when I have a bad time with fatigue.

I don’t talk it about it much though, if she’s a good friend she should be prepared to listen to you as well. Has she always done that?

...and don't moan to her about your stuff. Save that for a different friend.

It is different though OP, very different. She isn't 'tired' she is bone crushingly exhausted and may struggle to even speak, let alone move when you don't see her.

You sound so unpleasant the way you constantly feel the need to say she is 'harping on - so rude and derogatory. Perhaps it is all she talks about because it has completely consumed her entire day, and therefore life, and there is little else she has to discuss because chronic fatigue and ME (all chronic illness) completely alter your life, stop you doing anything, change everything, it's really devastating. If you're genuinely trying to understand, I would stop speaking about your friend like that, stop being 'that' person that compares the exhaustion of chronic illness to your tiredness/busyness. Your lives are both hard yes, that isnt a competition, you aren't 'doing better than her' for not mentioning it.

Maybe just stop scrutinizing the poor woman. I have severe fatigue due to a separate life limiting condition, I cut my hair short because I (literally) don't have the energy or mobility to deal with it when its long and couldn't do anything else in a day sometimes if I spent the energy on my hair of a morning. Maybe she feels insecure about having a hairstyle she doesn't actually want. If she is off work with CFS she likely has a lot of muscle deterioration from being inactive which will make physical activity even harder.

Ultimately, maybe just do her a favour and extricate yourself. Most people do when you're chronically ill anyway OP, because they don't genuinely try to empathise, make judgements or police the free time of the unwell as though it isn't possible to feel well on some days and not others when you have serious illnesses rather than just be happy for them that they were able to have fun or get out for a little while in a week so I doubt she'll be surprised. She can't really win.

But if a pal is very tired, I don't do "oneupmanship". Tired is tired and I try to respect other people's tiredness levels. I don't say "that's not tired, you should hear about me". If your friend is doing that, op, they are being an immature arse.

I think that whatever your struggles you don’t get to just dismiss other people’s and check out of being a friend.

I’m really struggling with pain and fatigue at the moment. I’ve barely seen my friends because I need all my energy for work and it can be hard to listen to their life dramas when at times it feels trivial.

But it’s not their fault I feel rubbish and actually they have their own problems to deal with and yes it is exciting to have new carpets so I’m glad they are happy about that and don’t feel they have to hide good news from me. Being resentful and selfish is being a bad friend.

hal, I did not say she had a full social life. As I don't know what that would be. I am a lone parent of a DC with complex needs without family or support network. I don't go out, I don't have holidays... and I don't judge her at all for going away.

not sure what point you are trying to make.