Lost friends due to chronic illness/ME - any suggestions?

[Booooooooom]

In 2022 I got Covid and have never been the same. I have never had a huge amount of friends but the ones I did have stopped asking me out when I had to keep cancelling. Eventually in 2023 I became completely bedridden and had to quit my job and move house to downsize and have some money (I’m a single parent, luckily both kids were at university).

I didn’t qualify for any benefits so I had to try and find another job - I eventually found something at half my salary that allowed the flexibility I needed. Slowly I have been recovering and I’m now able to work full time but only do 3 days in the office to give me enough time to rest in between. I can’t do anything else during the week - and I need to spend most of the weekend recovering.

My friends have walked away - I understand why, it’s impossible to maintain a friendship when the only time I can really see people is when I’m on annual leave. One said to me it’s clear I prioritised money (work) over them - but they are all married and it’s v easy for them to say this. If they got ill they could rely on their dh’s salary - I couldn’t do this.

The doctor thinks I have ME. I was moderate and am now mild which is great but it’s not getting any better from here.

Im just wondering what others do with chronic illnesses that impact them this way? Do you give up on friendships?

I totally get it. I am actually resting right now and too tired to reply properly but I will.

Friendships with MEcfs are v difficult but doable with the right friends.

I dont know the answer but wanted to say i understand.
I'm a single parent and have been ill health retired for 11 years due to ME (dc were 5- 10 then).
My friends all left a long time ago. My family mostly too. They dont understand, my mum keeps telling me when your better you can do xyz, where as I've stopped looking at it like that because they're not achievable goals but then I'm perceived as not trying hard enough or being pessimistic.
The money thing is obviously a big worry and I'm going to need to downsize soon.
I dont speak to another adult often for weeks on end. I'm very apprehensive about dc leaving home as I may not see anyone then when I'm too ill to leave the house.
Have you looked getting a formal diagnosis? I got mine to help show my needs for pip/esa but it could help if you need more adaptions at work.

Thanks both - my GP was hopeless. I eventually paid to see one of the ME specialists but my GP is v old school and one of the type who I know will think this is in my mind (it isn’t) so I’ve just not gone there.

what I’ve found with every doctor is that they are desperate to see the positives - ‘there’s nothing wrong in your blood’ ‘you are improving’ - well yes except I’m still I would say only 25% as active if not less than I was when I was well. When I was bedridden I never thought I would walk again so I don’t want to belittle my progress but my quality of life is still absolutely shocking.

I tried to get PIP and they basically laughed at me - even when I was bedridden and I can’t put myself through that again. Luckily I have improved since then but i still can’t walk far. Literally in the last few months I’ve been able to do some light household chores - I couldn’t do anything before then!

@Mixberrycrumbleandcustardmoney is such a worry isn’t it. I am terrified I will have to stop working because of my finances but on the other hand desperate to stop working so I can have a proper rest. I feel damned if I do and damned if I don’t. If it gives you any hope, my adult children have ended up back at home as their landlords sold the flats they were renting - they probably don’t realise what a help they are to me!

This is so horrible, I’m sorry it’s happened to you.

One of my friends has had something similar - either long covid or ME triggered by it. We’ve stayed in touch with phone calls, where we would normally have met up a few times a year. Could you try getting back in touch with the more sympathetic of your friends and having a catch-up over the phone? Or maybe get chatting in a WhatsApp group?

Other than that, the only thing I can think of is some of the groups on meet-up do virtual meetings but you might have had your fill of zoom!

My timeline is similar. GP diagnosis in 2021. Consultant confirmed it in 2023. I'm mild and have stayed mild so far, thank goodness. I was really terrified for a while. I've relaxed a bit and feel more confident as time has gone on, though still have my wobbles.

This is hard because in a way I'm not sure what to advise. I've kept my friends but don't see them that much. I've got X3 locally which have been amazing. They probably don't realise how much they've meant to me. They're so understanding. Will arrange to see one in particular and it's always ok to just come over for coffee if I can't go out or rearrange. Perhaps it's helped because all of them have had a serious health issue at one point or another too. We can empathise with each other. I might see them once every 3 or 4 months or more though.

My sibling is not understanding and my relationship with them is struggling.

I think something that has helped me is acceptance. I spent a lot of my life as a people pleaser. MEcfs finally gave me permission to say stop. No. Can't do it. So if a friend or colleague or family member is causing me stress, I just let it go. I don't spend energy on convincing anyone of anything.

We have a gentle chatty thread going on elsewhere so you're welcome to come and be our online friend. It's in chat.

Thanks @NarnianQueen - I did try and reach out but I could tell they didn’t want to meet and that’s fine I guess. I think being super critical it just looks like I will only meet up in a way that suits me but there are reasons for that! E.g I can’t drink any more and I can’t stand for a long time and the pub we used to meet in is a 45 mins public transport journey and you only sit if you’re eating and I know it would be too loud. Sigh!

thanks @MewithME - I can tell you being moderate and possibly even severe at one stage was terrifying. My heart goes out to those who are severe - my brain didn’t even work when I was that ill so I suppose I should be grateful for small mercies. Thanks for the tip for the thread, I will have a look!

My best friend has ME. We’ve been friends for 40 years. Some times she is bedridden , on those occasions I sit on the bed and we catch up. There are days where she isn’t up to company so we take a rain check. When she’s good we go out. We’ve been on several holidays , we go when she’s having a good spell. Even then she may need to rest for a day but that’s fine. We’ve been friends through good times and bad but our friendship is important to both of us.