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 a friend with CFS and Ehlers Danos (EDS). We speak about it occasionally, I ask how she's doing, as she goes to support groups for it and does a lot of awareness raising type things. If I can see she's having a particularly hard time with it then I ask about it.

HOWEVER we talk about about so many other things. Work, TV, films, gossip etc. Her condition doesn't consume her life and she seems to be grateful to get on with ordinary mundane things with me whenever she can. Some days it's so bad she literally can't get around without a walking stick or crutches, but she still manages to ask about me, my son etc.

Friendship is a 2 way street, if the only thing you have in common is unloading your woes on each other it's not a particularly healthy friendship.

If you want to salvage the friendship might be worth having a word with her along the lines of "You must be glad to finally have a diagnosis, and I can't imagine how hard having his condition must be. But, tell me a bit more about what else is going on in your life... I saw you went out with X on Facebook how are they doing? It's great that you managed to get out and about". Try and get her to focus on some positives she still has going... Maybe where is her next holiday?

Sometimes people get stuck in a spiral of pity/worry and it's all they can focus on. Maybe ask her to tell you one good thing about her day/week and focus in on that to remind her that her condition doesn't define her.

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!

My friend with terminal cancer does not like talking about her cancer and is weary of the endless questions “oh how was your scan?” Etc.

What do we talk about? Brexit, Trump, the weather, bloody Boris, a book she had recently read, what we’re watching on tv, our mutual friends, a new cookery book and some recipes that might be worth trying. She tells me about how her brother is doing (he is mildly famous) and I tell her about what my lovely niece is up to

PS her comment is that she is more than her cancer

I haven't been diagnosed with cfs but have with fibromyalgia, chronic fatigue however is a huge issue for me. The tiredness isn't just been extremely tired it's a bone weary exhaustion that comes from your very bones. It's feels like waking up after been in a coma for months, my muscles are stiff and heavy, my head is fuzzy, my whole body is in spasm with shocks. I feel like I'm walking in quick sand and burnt all over from the sun. I haven't been on holidays in years as the travelling and preparation is too much. I used to go out with my husband for a few hours at the weekend but that has ended because I'm left with chronic neck pain and headache for days afterwards. I'm not bed bound but have to pace myself a lot, if I do a small shop or some house work my body becomes exhausted and I'm forced to rest even if my brain feels wide awake. If I've walked too much I get dizzy and light headed and it's like all my energy completely leaves my body. I don't get out much anymore, I went to the pictures this week and my body felt bruised from sitting in the same position for too long. So I imagine cfs must feel like that or even worse.
For me it depends on the friend, if most ask i say I'm fine, one friend is very good and would check in with me a lot. I would tell her more but I would be very conscious to not monopolize the conversation so I would make sure to ask her how things are going on with her and let her talk about her issues or we just talk about her work, plans or kids.
Maybe your friend just feels so comfortable with you she just lets it all out. I can understand how this can wear you down though so maybe try and talk more about your issues or change it to general chit chat.

@Whywhywhynow the OP has already said that she rarely talks about her own problems. Sounds like she wouldn't get a word in anyway.

Clearly you've either not read her updates or you're determined to think badly of her, even though she's been at pains to say that she does understand her friend's condition.

People with difficult conditions aren't all saints, an dit seems that her friend is self-centred, full stop.

If you've had a bad day, you should be able to talk to your friend about how you are feeling as well as listening to her. If she doesn't seem interested then I think distancing yourself or meeting less might be better. Having a disabled child is very hard so of course your friend should be there to support you as you her.

I haven’t RTFT but I have CF. If you were say a Facebook friend of mine, you’d think I had quite an exciting social life. I go to festivals, parties and holidays. However I also regularly don’t do things as I just don’t feel up to it when the time comes. If I do have an event to go to, I have to conserve energy as much as possible for the days before, and afterwards I’ll often be in bed for days or weeks recovering.

I work part time self employed, so I can choose my own hours and work when I have some energy. I can see why people find it hard to understand how someone can find the energy but not to socialise. But the problem is with a job, you have to be there on set days at set times. CF isn’t really compatible with that. You don’t know when you’re going to have a crash and end up in bed for weeks. Some days are ok, others are terrible, and there’s no predicting this. So attending social occasions as one off, irregular things if you feel well enough is totally different to having to be somewhere week in, week out, for a set number of hours.

I wish I could get a ‘proper’ job and have a more regular income, but I can’t. It really wears you down living like this so personally when I can I choose to spend my limited energy to do something that involves interacting with others and will give me a bit of a lift, as day to day things are pretty bleak and depressing.

@MayDayHelp I get it

Just read that back and meant can find the energy to socialise but not to work .

There's a phone in now with this exact problem on this morning.

I have a friend with chronic fatigue and I do feel for him. Before he moved away we used to meet up quite a lot and I would help him clean his flat if it had got on top of him. But at the same time I find it very irritating that every communication with him has to include a reference to his health, whether it be text, email, phone, birthday card, even when it's completely irrelevant.

Recently we were queueing to get into a museum and he started chatting to the people in front of us in the queue. Three times he started telling them about his health and consequent early retirement; the subject was changed but kept on bringing it up. He goes on about "my condition" as if it's something he should be proud of and it makes me cringe. (Obviously he has absolutely no reason to feel ashamed about being ill, but it's not something to boast about either.)

So I understand how you feel.

To be fair about your example, if she cut her hair because it fell out, what else is she supposed to say? Make up a reason? She says it’s because of that because it is. That illness will be the reason to many of her “choices” because it is a massive force that effs up your life in so many ways and when people comment on the things you do BECAUSE of your illness, it’s ok to say so. She deserves to have friends who don’t pressure her to pretend she’s not ill.
I had a friend who said I always talked about money. It was wild to me because the only time I mentioned money was when she tried to make plans with me I couldn’t afford or asked me intrusively why I’m not going on holiday or whatever. I’d just say the reason: I don’t have the money. The fact she saw that as ME bringing money up all the time was a very telling thing.

Now I don’t know if that’s the case in your friendship. that’s very different from just talking about something 100% of the time exclusively and that being the only form of exchange you have now, and not listen to you at all, which obviously would affect your relationship.

but I think from the way you talk, that you’re not really a friend to that person and if she indeed cannot listen to you then she’s not either and you’re better without each other.