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.

Has it made any difference him becoming an ex?

Thanks guys. Um yes I guess so but I'm just so frustrated I spent my time with someone who was so selfish and uncaring ahaha ! Don't you hate the bad days ?? Do people find it's worse for then in the winter ? X

Yes, that waste of time is annoying but is the sunken costs fallacy, at least in part.

I always feel worse in winter. Just looking forward to the summer now... only a few months to go! 😫

Winter is horrible yea im worse , was a woman on place in the sun the other day she was looking for a winter home for her athritis i thought i need a bloody winter home

In more well times I went to California for a month though during the drought and that was horrendous. I cried with joy to see it was pouring down with proper Manchester rain when I landed (August)... that trip put any thoughts of a winter home out of my head well and truly!

Oh drought sounds miserable

Yes. I was there (doing an internship) for 5 weeks and there was not even a drop of rain for the whole time. Not a drop. Restaurants weren't allowed to give you water unless you asked and even then no jugs, you were allowed a glass only. I came back with a new found appreciation of Britain's weather and green fields.

I've just scanned this thread and it's made me so sad and angry to read. Who are all these cunts who just drop people when they're ill? I'm appalled it seems like such a common experience.

Two very close friends of mine have ME/fibro and it's shit - I wish they didn't have it. But I get so much joy and happiness from our friendships. Now and again, if I'm grumpy anyway, I'll feel annoyed if they cancel our plans. I know it's selfish so I remind myself to not be a dick, they're obviously not lying about being ill, I'm sure they don't want to be ill, so why should I be annoyed? I'm just sad because I would've liked to see them.

I'm honestly not a particularly nice person or anything, I love my friends though and I'm just so baffled that people seem to just fuck people off when there ill.

to everyone who is suffering. You deserve better than shit friends and family.

I am not ill but my best friend has ME/CFS and a number of associated illnesses

Sometimes it's hard to remember she is actually ill because me and her other friends only see her when she is having a "good" moment all made up, dressed up nice etc. not that we avoid her at the bad times, she avoids us.

Just another POV!

Wish could wave a magic wand take it away from her...she's just come out of yet another shitty relationship with yet another bloke who doesn't understand her problems 😰

That's the problem I find...when I'm feeling good I like to put on makeup and do my hair...obviously I feel awful but not to the point I need to be in bed and cause I look fine people assume there's nothing wrong. I just get very distressed and upset around people who lay their health problems on to me for example ' I'm so ill I feel so tired and exhausted' I just feel like screaming that they have no idea...and why are you telling ME this ?? I don't know...feeling deflated and angry with the world today !

Yes... the curse of invisible disability...

I'm sick of taxi drivers telling me I should be jogging to the gym...

I fucking well would if my legs would work reliably but I haven't been able to run for years.

People just don't think before they speak do they. I've been told I need to lose weight before...well I would love to be able to go to the gym and exercise but can't !!!

Your friend is avoiding because her physical and emotional energy is being used to just get through the brain fog you get from pain and fatigue makes it hard to concentrate so avoiding people friends/family is self preservation really, its cheering you understand that Rocket

Yeah, I know but I have usually been able to stay calm and remember it is just idle chit chat, they don't mean to offend and it's just hit a nerve with me.

I was scared going back to the gym and it was tough and probably contributed to my sleeping all last week. I haven't been since I'm thinking of trying again tomorrow.

Have found I can manage cycling and rowing ATM.

Has anybody tried swimming ?

I love swimming but I have a terrible concern about my ability to move about when wet and not in the pool - have done some though.

I have Crohn's with a badly behaved ileostomy, CFS and mobility problems from an accident 5 yrs ago.
I've not been able to go out in the evening for 3.5 years - need my regular 12 hours rest, and I just get too tired - but I hold down a job, just about. Have had to sacrifice a lot for it - probably the CFS could have improved if I didn't live in a perpetual state of boom-and-bust where often, to manage my 3 days at work, I am in bed for most of the rest of the time.
But work keeps me independent, keeps me earning, means I am giving.

And most people assume work = well and find it hard to get why I can do so little else. And some of this is because some people simply can't empathise. I'm mostly surrounded by people who can - many of my friends are also health care professionals, and I think you find yourself drawn to people who don't trivialise your pain from the get go.

I think learning to communicate assertively with people helps - I try to tell them what I need is not to talk about it, or to talk about things briefly then change the conversation. I've also explained what my unreliability means, but listened to the effect it has on them.
The thing I find hardest is this fear of being a burden. It's ok to be helped, and to accept help, after all, we all like helping other people (or did in our pre illness days!) and it's my pride and arrogance that stops me letting people in for fear of being judged. Personally I think that sort of stuff is massively receptive to CBT - I had 7 sessions after my ileostomy and those internal rules were a huge focus of it.

I relate a lot thru a screen - texts, whatsapp - the friendships that have weakened are those who don't/ won't/ can't maintain things in such a way. Their choice, after all.

Roodolf - that's very helpful thanks. I need to reflect a bit on whether it is pride and arrogance... I feel at the moment it really is just exhaustion with coping and surviving and the timing of the diagnosis was shit. I have spent the last few years doing a degree and loads of voluntary work and work experience in order to try and get some independence and break this 'coping and surviving' thing. I graduated and then a few days later got the diagnosis, feels like a cruel twist of fate as my subject does not seem to be compatible at all with being ill.

Offred your last post really struck me as being so similar to both my own feelings a few months after diagnosis and what I have heard from others.

It's just so hard to get our head around what the future might be and, I think because MS is so different in very person, explaining the new reality to anyone else when we don't really understand it ourselves seems impossible.

At the start of last year, I struggled to walk short distances and was using a walking stick. Stairs were mountains to be climbed. My balance was almost non-existent making a range of everyday tasks - from dressing to using escalators - a major challenge. I walked around holding on to walls and my beloved heels were banished to the back of my wardrobe. Almost all my energy went on keeping my job and everything else went by the wayside. I felt like I wasn't me anymore.

I've been lucky because I had lemtrada - not sure where you are with treatment options but I know it takes a good year to get one going reliably, sometimes longer. As a result, I haven't relapsed since March and, although I've had a couple of flare-ups from existing nerve damage, they haven't been too bad and a few symptoms have improved.

Equally important though has been my own re-evaluation. It's been bloody hard and I've probably been my own worst enemy sometimes and I've certainly pushed people away. However, I now have a fabulous new job, close to my dream job actually, that works for me.

I've hesitated to post this in case it sounds preachy or rose tinted. That's not what it's meant to be but I do want to reassure you that we all hit the point you're at now and it really will get better.

It is helpful not preachy or rose tinted overtired. I've been conscious this feeling could just be a phase to do with diagnosis. It does offer me some hope.

ATM I am not eligible for any treatment.

(Which I know is because I am, objectively speaking, well)

Thanks mrsjayy ...I do try and understand as best I can. I've known her ten years now and I am still learning

Also what people have said about "friends" dropping them when they're ill ...that's just disgusting I just don't understand how a human can do that to another human 😡 ...since I've known my friend this has happened to her so much. 😰

I have periods of illness (UC and RA, although I either have severe arthritis or none, not the normal constant low level) and periods of remission. I think one thing I can add is that when you are healthy, friendships change and come and go, but when you are ill they only go - you are not replacing friends, so it feels like you are being left. Each friendship individually might not have been that different if you were well. Also, the people I lost during my bad years tended to have their own troubles and felt that they couldn't talk to me about it as I was so much worse off.

It helps to grab the good times with both hands, I have found that nobody minds a last minute invitation to the cinema or coffee - even if they are busy, it is nice to be asked. I also found that friends don't mind being asked for particular favours that would seem too much to ask from a healthy person (can we go to this show, the matinee as I'll be tired and you'll need to drive me) - being proactive about what you can do is okay and spelling it out is easier for friends than leaving them to worry about what you can manage, not getting it quite right and you pulling out. You would all make these allowances for your friends, so give them the chance to make them for you. It does feel hard when you are lowest in confidence, and feel you have less to offer, to ask for more, but it will be okay.

I learnt how to do this from a friend with a very disabled child, there is a greater incentive to proactively get things for your child than to ask for them for yourself. We should all treat ourselves with the level of kindness and importance we would if it was someone we loved having a hard time.

The thing I find hardest is this fear of being a burden. It's ok to be helped, and to accept help

Yes I agree to that. Ad I think it's because I am very much used to be the one who GIVES rather than the one who is taking/receiving. The one who is DOING rather than the one who is receiving (a more passive action).
I still have massive issues with that (and that's ranging from a friend asking if I am OK or want to go and sit in a cafe for a bit on a short day out to feeling dependent on DH re finances or HW).
There is also the wish for things to be like they were before too.

I'm sure it hasn't been helped by DH reactions either...

My fears are numerous and somewhat nebulous;

For DD and how I will cope negotiating her difficulties.

For myself and facing a potential 60 years of uncertain and unpredictable disability.

Fear of being dependent.

Fear I will never get a job nevermind a career.

Fear of being dependent on benefits forever.

Fear I will never have any kind of security of my own.

Fear that basically every family member I could end up having to rely on is abusive, selfish and unhelpful.

One thing I am not afraid of - being alone.