If you have a chronic illness ... friendships

[Trilling]

Have name-changed for this.

Have ME/CFS. I have some times where I'm under part but as OK as I can be, but have alot of periods of horrible sickness that few people see, where I'm too ill to do anything. Generally, its restrictive and its pretty debilitating in terms of physical activity and also work.

I think its not the only thing, but it has had a real impact on my friendships and relationships. Either people ignore that I have this illness. Or they just talk about themselves a lot, one friend to such an extent that I felt it was insensitive, and I've distanced myself. I have few contacts and friendships left. Even if I was No. 1 healthy person I am sure I would struggle with some aspects of friendship. Its just with a chronic illness, they seem to be magnified. I feel I have to make my own inner life very much, if that makes sense .... but I do crave fun and friendship occasionally.

Makes sense yes.

It is also what I don't want to have! How do I get to a point where I can feel OK about it? Does anyone know? Is it actually just a thing where I accept that that is how I actually feel and will continue feeling, join as a member of dignitas etc? Or is it something that will very likely change?

Fellow me/cfs sufferer signing in.

My dc's are older now so have lost contact with lots of school gate mums so feel much more isolated. I stopped working about 3 years ago so no work colleagues.

I have two friends that I see consistently for a quick cuppa. I'll normally see them both once a month. I'm always trying to organise catch up's with other people, and then having to cancel at the 11th hour and then you just stop very invited along to things. See random people once a year and it is awkward when they ask what you've been up to and the answer is 'ooh - I had a shower the other day' :o

One of the things I learnt is about identifying which door to knock on for social, practical and emotional support. This year my aim is to increase the social support - I really miss being out with a group of friends so I'm going to join the local wi (they have a younger section with subgroups for craft groups, book groups etc).
I'm also looking at social stuff that doesn't take too many spoons - stuff like comedy (easy night out as not too much conversation, can sit down for the whole evening :o). Looking into a local stitchnbitch group too.

I think it's so hard as no one really knows what's its like and how isolating it can be. Thank goodness the Internet has been invented.

I'm Suffolk /Essex borders if anyone's local.

I have chronic fatigue caused by an autoimmune disease, I manage my condition well by not overdoing things and even DH forgets about it sometimes.

Problem is that people then think I am well and still expect me to lead a normal life, whereas I can generally only manage about half as much as 'normal' people. I get pushed and pushed to keep up (work, social life etc.), and when I say I can't do it as I'm too tired I get the usual "oh everybody gets tired"

I drop 'Friends' who think I am just being lazy, I just can't be arsed with them. But I rarely discuss my condition with my friends unless they specifically ask me about it. I do have one friend with chronic fatigue caused by a totally different condition and we do like to have a good whinge together when its just the two of us

Spoons and for everyone on this thread

Yes pacing so carefully that you can manage stuff is what makes us so misunderstood - when people see that snapshot of me out looking 'normal' they don't realise that you've had to rest for a day and will need another day or so after to recover.

So I'm sat here with my two small children cuddled up, trying to get up the energy to move and feeling so so guilty that I haven't moved much today.

I really needed this today, for all of you. One of my friends totally doesn't get it, in fact she recently suggested I didn't understand illnesses, and didn't know what it meant to be tired (her youngest is a night owl). I can't decide if she's being mean or just plain ignorant. It's driving me bonkers. I'm kind of slowly withdrawing from her. I even opened up a while back, saying how I felt when she asked, the response was "people shouldn't dwell on the negative" sigh I rarely mention it, I'd rather have as normal a life as possible. Maybe I need to be more blunt!

Yeah, I had a friend who ranted at me that I didn't understand real tiredness because I didn't have fibro... I'd been nothing but supportive to her with her fatigue etc and clearly do understand. I was always there for her but she just cut me off when I got ill.

It's good I don't mind being alone because I have just one good friend and that's it. Just me and my kids, crap family.

To all of you on here...spend time with people who make you happy. Life's too short to entertain the takers of this world. I have chronic spinal stenosis and arthritis. Most people just don't get it. I don't want sympathy at all, just a bit of understanding when I'm not firing on all 4 cylinders.

Yeah, that's it really though, I have one person in my life like that. I have a family who add to rather than reduce the burden by making everything about them. I just left an abusive boyfriend. I have two abusive twats who I have children with who rely on me to stop them being dicks to my kids. I have a daughter with suspected ASD who is completely dependent on me to negotiate all the crap with the LA, school and NHS.

I just mainly want it all to stop being dependent on me all the time. Thank god for my friend but with her I just want to be able to be a normal friend, not use her as a carer.

And the common theme is people saying 'let me know if there is anything I can do' and just not answering the phone (deliberately) if I do call or my mum saying 'oh my goodness I am so worried about you, I will do absolutely anything to help make your life easier' my dad turning up out of the blue to reassure himself I haven't killed myself and then them booking a holiday to South America that lasts 6 weeks (they left a week ago) and not being around to pick the DC up on thursdays etc it's just weird.

Which is it? Terrified I will kill myself and committed to do anything to help or just carrying on their normal lives as wealthy pensioners?

My Children are adults youngest is nearly 19 the thing i found to do with them is pace i know little kids want to be on the go allthe time but once you get rid of the guilt of you are not able to run about the park a million times then you do feel better. Children learn to understand

offred you sound like you are really struggiling lovey

op

facebook is a lifeline for me

i use it as a diary - posting photos of the times when i can do good stuff - reminds me that it is not all bad
v easy to keep in touch with everyone too

Essentially, like many others I just feel FML mrsjayy! I know attitude is a major determinate of coping/happiness... just need to have a day well enough to arrange some counselling really.

Another one here

I have fibro, (tho there is a query whether it might in fact be MS) IBS, chronic diarrhoea, balance problems, heart problems.

I had to stop work in my early 40s. I have no friends, not one. I had a friend from school and she asked me once how I was and I made the mistake of offloading and telling her how bad I was, and she just never contacted me since that episode. I suppose she thought I was just being moany. My mother has said she thought I was just lazy.

I just have my DH and I dont know what I would do without him

Shit isn't it really knackered, don't know what else to say.

Glad of this thread though, just to get all of this poison out from my head. Know IBU about much of it.

I don't know about that, Offred! You're coming to terms with it is all. Dark days

Hi, I can relate.
I've got an auto-immune disease which sometimes affects me noticeably ie limping but often it's just fatigue or drug side effects.
All my close friends know and always ask how I am, although I feel there's only a couple who I can really vent to.
I try to keep it fairly light and rely on my DH and online support groups.
I don't think there is any way that people who don't suffer with a chronic illness can understand how it feels.

I don't tell most other people as I cannot stand to hear their dietary advise or crack pot cures.
Or how they've got a bit of arthritis in their pinky so they understand your systemic degenerative damage.
If people say oh but you don't look sick I tell them that's because I inject myself with drugs every week. !
Thankfully my family understand and are fully supportive.

So sorry Offred that you are having such a tough time.
Thinking of you

I think the thing we need to remember is we're all carrying on, the best we can. And to be honest, that's not something to be sniffed at.

Mummyto2monkeys - your first post made me cry. So much for you to endure.
Thank goodness for your husband, friends and supporters.

Today has been particularly difficult. I'm emotional and exhausted. I feel like a sloth, just can't move any faster! :(

I sometimes feel like I'm a spectator in my own life :(

I have ME too.
I found that that my friends are either people who are ill themselves or are carers themselves (for a family member).
I don't tend to talk about the ME to anyone TBH. I don't think it brings the best of people out ....

The one thing I have noticed is how some many posters are talking about finding support online. Can I ask how you found those groups on FB etc?

Sorry to hear that fizzy.

Is there anything we could chat about that would help?