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).

I have chronic illnesses.... I rarely discuss with friends... I find it boring...

If anyone presses me I say... Had a few bad days and looking forward to better days! So what are we doing today? What's the latest with the brexit rubbish?? /whatever.

Pointless moaning NEVER helps... It just reinforces how crap you feel....

But if its problem solving talk... This is good. As in... I've found that by going swimming regularly brings me pain score down... Etc etc

I have three friends with MS. One literally never mentions if unless it is directly affecting her at that moment. One I know struggles and talks about it sometimes. The third talks about nothing else, and posts about it constantly on social media. Everything she has gone through is worse than anyone else. I spent years running errands, doing tasks, listening, asking and helping any way I could including dealing with her care team and attending hospital appointments. I took the brunt of her moods and anger, even when it was nothing to do with me. I defended her to everyone who found her difficult, because I knew her life was hard. The last time I saw her she ranted about how all of her friends make her feel like shit and nobody has ever done anything for her.

I have been diagnosed with fibromyalgia after years of pain, mental health issues and everything associated. She has never once asked me how I am. I try not to talk about it because I don't want to drain anyone else with my problems, so unless it's relevant to something that's happening I keep it to myself, even on the days I can't pick my kids up from school and brushing my hair makes my arms ache. I also don't try to one up anyone. A friend of mine has had a hard time recently and not once have I told her she doesn't have it as bad as me, because that would be selfish, petty and ridiculous.

If you can't raise it with her and you feel drained by her then I'd suggest you distance yourself, though be prepared to be the bad guy!

I’d end the friendship tbh.

I think I’ve been your friend many years ago though not through illness but bereavement. I think a lot of it is personality type and for some people it can be very easy to slip into blinkered vision and unable to think past your own circumstances. It also can become an easy excuse it you feel threatened or jealous of someone else’s life or the thing that defines you. Sympathy and support are addictive and if you find a way to achieve this easily through your circumstance it can be difficult to even want to look for other ways to fulfil yourself.

I don’t really know what to suggest because I eventually started boring myself (!) and stopped.

If you can manage a frank conversation with her about how you’re finding it hard to carry her mental load as well as your own with no respite to just be friends or even possibly some support flowing your way it might be beneficial for not only your friendship but your friend overall. It’s risky though because not a lot of people are able to digest hearing their perceived shortcomings without becoming defensive or offended. If you go that route you have to be prepared for the potential it could end your friendship.

Otherwise I think you just need to step back and engage less. Although it’s great to support your friends sometimes it’s to big an ask and you have to protect yourself first.

MNHQ mantra of never offering more than you can afford to give applies here.

thanks all. food for thought.

TBh I'd scale back the friendship. You need friends who care about you, who energise you, who support you - as well as the other way round.

You don't owe anyone friendship.

OP you haven’t posted to understand the condition at all. You want others to judge her and say she’s been a terrible friend. Many posters have given some very useful information about the reality of living with CFS but you don’t seem interested.
You have, ironically, responded with how difficult your own life is and how she doesn’t consider your needs. Hope you don’t get accused of ‘harping on’.

why

thanks for that judgemental crap. and no, I don't harp on about it.

I have CFS. It ebbs and flows. When it is bad I can barely get out of bed. I shuffle up the stairs on my bum, I can’t walk the dog or make a meal or look after my DD properly. It is all consuming. I also can’t socialise when it’s bad.

When things are good I look normal and just go to bed earlier than “normal” people.

Your friend may be struggling but that’s no excuse for being a bore and not caring about your life. If she can socialise then her fatigue is no longer that bad.

I think as a PP put it most succinctly, there is probably about the same percentage of pains in the arses in the CF population as there are in the general population and sadly, your friend seems to be one of them.

It's great that posters have been able to educate lots of us about the condition, which sounds horrific, but in the case of your friend, she doesn't half sound a pain. I fear you may have to back away for your own sanity.

Your own life sounds hard and I hope you can find some other friends.

I would say to choose to spend time with people who generally make you feel good and not with people who don't.

CFS is a serious and debilitating condition to live with and there is very little understanding, support or awareness from the medical profession or the DWP let alone the general public. So I imagine life is genuinely very tough for your friend. Your life doesn't sound easy either. It doesn't sound as though the time you are spending together is very beneficial for either of you though. I would prioritise looking after your own mental health in this situation and reduce contact significantly or even completely.

Sometimes relationship dynamics work like this if one person is trying to explain their experience and instead of just listening and saying that sounds really hard the other person tries to make suggestions as to how to make it better or how to look on the bright side or how it could be worse. This kind of reaction makes the first person feel they haven't been heard or understood so they feel they need to say the same thing again but amp it up a bit more. Thus they can't move on to another subject - even though both parties would actually prefer to...

OP, the conversations you describe sound very like what I was told are called "Why don't you ...?" "Yes, but ..." conversations in counselling - where one person is trying to solve the other person's problems, but the other person really isn't interested in problem-solving.

If your friend is emotionally draining, you're really taking the roles of supporter and client, rather than having a friendship. But unlike people who do this as a job, you have no support for yourself. So you have to limit it to what you can cope with.

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

No - she's had it for years

It's all me, me, me. Anyone who talks unceasingly about themselves - whether their health, baby, dog etc - is bordering on selfish bore territory. As is your friend

I’m sorry you are feeling sad about your life and are having difficulties at the moment.

I think you need to let the friendship drift.

Do you have any friends who uplift your life? Are there any opportunities to make some? What can you do to make you life happier?

I think you should take the spoon theory and apply it to yourself. You only have so many spoons of love and kindness to give out, so choose who to give them to, with the understanding that you need people to pass spoons back to you too!!

Frankly, she sounds like a scam artist. I have known people with such conditions and their lives have been irrevocably changed. They have not been able to enjoy overseas holidays or lunches out.

Tbh it seems like your friend is extremely self-centered and that's what the source of the problem is, not sure you understanding chronique fatigue would help you deal with having to listen to the same complaints all of the time.

Has she been tested for anemia?

I had extremely severe anemia a couple of months ago which doesn't seem like much but it was absolutely horrendous and terrifying as I went from being always extremely full of energy and not understanding the concept of naps to needing several naps a day to make it through the day, climbing the stairs would almost make me pass out and leave me completely out of breathe and with an irregular heartbeat, I would still go out and do things but by 6pm I would lose all energy and all ability to focus, my speech would get more slurred and I would struggle to finish my train of thoughts and actively following a conversation would be a battle, I often had to excuse myself to go home at 6pm because I was useless and I had zero energy left in me (I am in my 20's so very abnormal), I often had to turn down activities I REALLY wanted to go to, because I knew that if I went I would need 3 days to even begin to recover, I cried quite a lot over it because I felt like such a bad friend, and I also couldn't understand what was going on and was properly terrified by all of the changes, doctors also took a while to find out and one of the first thing they suggested was Cancer so it was terrifying and while thankfully it seems to have been only anemia, it made me realize how horrendous fatigue is.

I had been tired/knackered before but fatigue is something else, it's properly sleeping 9/10 hours but still feeling like you have only slept 1 and as if your battery are always at 20% and only go downhill from there.

I have done my treatment but despite normally being off meds now, it has had its tolls on me and I still feel semi-fatigued most of the times (some days are worse than others) despite having a much lighter schedule etc...

Fatigue is awful but you shouldn't have to put up with listening to it for hours on end.

Hi OP,

I suffered with CFS / ME in my teenage years so I have some understanding of the condition.

I feel as some others have said that this is not a friendship. Your friend has an illness, yes I understand this but it is not helping her in anyway talking about it non stop. When you talk to her or see her I think you should be kind but clear in explaining how you feel. Also explain that your life with your DC is very difficult but on the occasions you see her you would like to talk about other happy things.

Does your friend go to any support groups for CFS? This would give her somewhere to talk about her condition to others who are going through it themselves.

Just because your friend has an illness it doesn’t mean she should drain you and talk about nothing else. Friendship is a two way street and whilst you have tried to be understanding of her she doesn’t seem to show any understanding of your very difficult situation.

If your friend doesn’t change after you have been honest with her I think you should distance yourself. You need to look after your own mental heath and this friendship is a negative force in your life.

Can I ask if you have looked into getting some respite care for your DC? If SS won’t offer this are there any local charities that might be able to provide some respite?
Also, do you go to any support groups yourself?

Take care OP, I hope you have other friends who offer you some much needed support and kindness.

Has she been tested for anemia?

I have no idea but she has had tons of tests at the GP and hospital so I imagine, this has been covered.

Can I ask if you have looked into getting some respite care for your DC?

Looked into? yes, applied for? Yes, ask for a carers assessment? yes. Got anything? No.

I was told as long as I work, I am obviously not needing respite. Things came to a head and I had to leave work and now I am not needing it because I get a break when DC is in school (SS logic, not mine - but it's not a battle worth having).

Honestly, I cope much better than when in work. It's just the financial side which is pretty tough. But we have a roof over our head and aren't hungry and I don't even earn anything. So I am not complaining.

It's more the social isolation as most friends aren't available in the day and I cannot leave DC alone at home in the evening or at weekends. So I cannot really see a lot of people anymore but I am used to it by now. It's been like that for a long time. We are creatures of habit. That's for sure.

Hi OP,

I am sorry you have had no success in getting any respite. I understand the ‘logic’ of SS saying you have a ‘break’ from DC when at school. But the fact is you can’t see friends and go for a meal or evening out and you can’t have a proper break such as a weekend away.

I’m sorry if you have already looked into this but just a thought, what about advice from these charities?

www.scope.org.uk/advice-and-support/finding-respite-care-short-breaks/

www.charitychoice.co.uk/charities/disabled/holidays-and-respite-care?onlinedonations=0

The only reason I mention respite is because my Dad had a long term illness (completely different situation I know). But we were very lucky, there were two charities locally that offered day respite and short breaks too. My parents were comfortable financially luckily but still had access to respite because my Mum was a full time carer. She would not have coped if not for us as a family helping to care for him and also help with respite care. As I say, I know you have completely different circumstances but I feel you are entitled to some kind of life yourself and should not be isolated like this.
I know you are not complaining and you have had no choice but to just get on with it, but I think you deserve to have some proper breaks.

I can see both sides. I am currently bedbound with fibromyalgia. I go on the odd holiday. The photos I put on Facebook are of the couple of times I managed to join the rest of the family and didn't have to be in bed. If I go for lunch out, it may well wipe me out for the week. I am meant to be having physio but keep being discharged as often I am too ill to go to the appointments (nice but of irony there).

When you have an illness which restricts you severely, when you can't go out much, what is there to talk about? I have fuck all to talk about! And if I did talk about my tiny social life, then some judgey fucker would make comments about me having a full social life so I "can't be that bad". We can't win.

What I would do, is between you, decide you are going to do something like your own mini book club. You read the book and talk about it the next month. Or you have TV "dates" - you both agree to watch the same thing at the same time but in different houses, then you can talk about it when you meet up.

Your life sounds so tough too OP, with its own challenges. And you need a more balanced friendship, that's understandable. But posters here aren't getting that she has sod all to talk about because CFS IS her life. So she is joining in the bits of the conversation she can - which are the bits about feeling crap. Does that make sense?

So think laterally and decide what you can do together, even while apart, which will give you new things to talk about. Don't give up on each other. You know that friends are precious

I'd cut her loose OP. She obviously had other friends that she can go and talk to. I don't understand why people gate keep CFS almost as the "worst ever" thing that nobody is allowed to question. I have just watched a good friend go through cancer and she honestly talked less about her horrific illness than an old school acquaintance who has CFS but manages to post about it all day every day on Facebook. Always exhausted but always online. It's infuriating.
Sorry but sometimes it deserves short shrift. It might be hard for her at times but it sounds like she also lives a full life when she feels up to it.

This is going to sound a bit left field but has your friend had any kind of implants/cosmetic surgery?

A friend of mine was diagnosed with CFS and after a long battle with doctors etc to do more tests, it turned out that her breast implants were leaking silicone into her body (despite her being told they were saline implants).

She had them removed and a year later she's a different woman, so much more energy and pain free.

It's actually quite common but as people don't talk about it, it often gets mis-diagnosed.

Thought it was worth asking.

I don't understand why people gate keep CFS almost as the "worst ever"

I appreciate where you’re coming from but I understand how defensive sufferers are of their diagnosis. CFS is a diagnosis of exclusion, there’s not one test that can be done to ‘prove’ it. It’s often treated with skepticism by health professionals, scientists and the general public. I get the need to evidence the reality of your health difficulties and think it boils down to insecurity because of being treated like your symptoms aren’t real.

That doesn’t take away from the fact that it makes friendships hard to maintain if someone only has one focus and no room to tend to anyone else’s emotional needs in a friendship. Friendships aren’t unconditional and the average person can only carry a one sided friendship for so long before the pressure is too much.

This is so true!!
When you have an illness which restricts you severely, when you can't go out much, what is there to talk about? I have fuck all to talk about! And if I did talk about my tiny social life, then some judgey fucker would make comments about me having a full social life so I "can't be that bad". We can't win.
Comments on this thread alone sum up the ‘can’t be that bad’ attitude to invisible illnesses.