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.

Hey!

I have ME too, was diagnosed 10 years ago and have had horrible periods where I've been bed bound. I also suffer from anxiety which is awful. I have lost so many friends over the years - I don't drink as I learnt pretty quickly that a glass or two would see me stuck in bed for days but a few of my uni friends seem to see hanging out as equalling drinking for hours in a bar or club which I just can't do. Others just slowly started to call less or invite me to fewer things; I never know if I'm going to have a bad day and cancelling is sometimes unavoidable even if I'm desperate to see them.
I found that the ones who want to be in my life will be, they make little adjustments that mean a lot like choosing to come round my house for a night of board games or take away pizza or a cinema trip rather than thinking I can always make a long journey into town and back again for a night out etc.
It has been really hard and sometimes I feel really lonely but my husband is great and I have amazing 'pocket friends' (online pals who are always there for me) plus I'm pregnant which has been incredibly hard but I'm just about managing!
Some towns have ME support groups - mine does and their online Facebook group is great!

Hi OP, I have CFS/ME-Fibromyalgia.

I've had exactly the same experience with friends. I don't mind people ignoring my illness, in fact I'd rather they did. But - similar to you I've had friends using my illness to manoevre me into a kind of therapist role and whiffle on about themselves. I got fed up with that and dumped a couple of them.

Don't know where you are in the country but please feel free to PM me.

mummyto2monkeys I'm really sorry to hear your story.

I assume that the doctors are sure that you've got CFS not MS?

Sorry can't type much as am struggling with fingers, bt can u point some of you in the direction of The Mighty website which has lots of inspiring and insightful articles from people with chronic illness. This issue comes up at lot
Just knowing there's people who understand helps

I have ME and EDS amongst others and gave a small selection of friends who, maybe not surprisingly, mostly have chronic illnesses also

It's difficult sometimes to know what to say. I have a friend with FM who had had it for years. It's her sole topic of conversation and if the conversation moves away from her and her illness she gets upset. It's very hard to be friends with someone who is so self obsessed. I was diagnosed with cancer last year and hoped for a little support from her. I didn't get any so I've ended the friendship. I need to concentrate on my own recovery. I feel a bit guilty because I was the only friend that hadn't faded away but her total lack of empathy was too much to take.

Conversely, I have another friend with the same illness and she's totally different. She has her bad days and we talk about how she's feeling but she has retained an interest in her friends and how they are, so still has a wide circle of friendship.

I very rarely talk about illness to friends as I really can't be arsed. It's a bit like talking about tax returns.

But I suppose a self obsessed person who gets ill will talk about that.

I'm embarrassed to say that now I'm the one who can't cope with people with cancer! Not bcs I don't care but bcs I can't handle it. But for different reasons, maybe... I know what's ahead and there's no way to sugarcoat it. Perhaps after some time has passed I'll be able to be a support. But for now I just can't.

I also can't cope with extreme circumstances in people's lives. Perhaps something like that was going on with the friends who vanished? I doubt it tbh but there could be something in it..

to you Offred and to all on the thread.

Perhaps now's the time to trot out the desperately tactless things people say:

"oh no! My sister had that. And she DIED"

So you have the people who vanish because they don't know what to say , worried they're going to say the wrong thing; then you have the people who have no worries about crashing about saying desperately tactless things..

Somewhere in the middle would be the ideal

Gloria yes I have had it confirmed again that its M.E, but every new g.p/ every nurse/ consultant/ OT or Physio that I see are shocked and say 'oh but we have never seen anyone with m.e as severe as you have it, usually our patients as severe as you have M.S' . With my anxiety this used to make me panic in case the neurologist had got it wrong. Now that I am on anti anxiety meds I no longer worry, which has allowed me to just accept my situation and make the best of it. I know of other sufferers who are much sicker than I am. A trial on a cancer drug that Norwegian Doctors found completely cured long term severe M.E sufferers, is about to start in Norwich. For the first time in years Imfeel we may be closer to a cure!

That's exciting mummy.

I had ME pretty badly in my twenties and was very acutely ill for about 2 years with a very gradual recovery over a further 7. It took me a further 10 years to be able to trust people again though. Neither my family or my friends were able to listen or believe what was happening to me. It was truly, truly awful and I still feel very sad about it occasionally. I still cant understand what happened and why people would have chosen to believe I was exaggerating, moaning or making it up as opposed to being gravely ill. I was very active prior to my illness and bed bound once I became ill. I couldn't do anything and had severe cognitive problems - I couldn't read or write for a time and couldn't speak sometimes. Why would I put on a performance like that? My mother, sister and step mother and father all refuse to acknowledge that I have been ill and that period of my life is never spoken of.

I have EDS and Chronic pain, I started having regular knee dislocations when I was about 14, I learned very quickly that my school friends got sick of dealing with them so I ended up quite isolated.

I had a major trauma to my knee several years later which resulted in a permanent disability and now the increasing usage of a wheelchair.
Made a "best friend" at uni and still in touch, but I don't think she realises how much I know that she, her husband and her other close friends take the piss out of me (and I'm the idiot hoping it will change)

I have a great group of close friends, two of my closest friends are disabled and helped me (alone with DP) with the wheelchair transition, the others are able bodied and able to see past the visible disability stuff that is off putting for some people (people aren't great at handling things that are diffierent are they?) DP's friends have been wonderful too but I still feel a burden at times for people especially on bad days, I love other people talking about themselves but equally don't mind them asking questions about me/my illness

I've got RA, Fibromyalgia and a couple of other long term conditions. I lost my job in December, trying to get another isn't easy. I have no friends, live 200 miles away from where I grew up. My DH has a lot of friends, is out most evenings playing football or doing hospital radio that he volunteers for, and many weekends too. I sometimes wonder if im more of a burden than anything else. The few friends I did have, have drifted away, because I can't do the kind of things they want to do. Im so lonely..

Hi I have a life long disability and comes with pain and fatigue . I don't have many friends as I can't maintain popping out for coffee or people coming round it is very isolating. On the not mentioning thing people don't understand or they want to treat you normal they find talking about stuff uncomfortable don't know what to say and don't want to offend ime.

I have CFS/fibromyalgia and have been off work for almost 7 years. I have gradually learned to accept where I am at, and to concentrate on spending my limited energy resources where it really matters. This has meant reducing my group of friends to around 3 people I see regularly, two of them monthly, one most weeks. Even then I often need to cancel at short notice because I am having a bad day.
It makes friendships very difficult and I am wary about making new friends in rl.
I have avoided online groups too as they tend to be symptom swaps or discussions about medication. I take what I need, I have tried to reduce or stop taking them in the past, it doesn't end well. I would rather medicate as needed and limit myself physically to get through each day.
I don't always feel up to being a friend, which must put people off too. Following conversations can be very difficult too which I find embarrassing, people must think I am stupid, so I avoid engaging with them and tend to just be quiet.
Crap all round.

One of my closest friends has fibro we were friends before her diagnosis she sort of withdrew from me before she was diagnosed I was always at the end of a text but I guess she just had her own stuff to deal with. We are back on track now but we don't see each other often because of our illnesses but are there for each other which is nice.

For all the new posters on this thread.

Teaspoons - it is awful about your family. It is just another way I think people have of making difficult things able to be coped with. No consolation but it does add some substance to the phrases 'it is not you it is them' and 'says more about them than you'.

It does generally make me angry that the way society seems to be set up involves the world reducing for people who are not well. A lot of it is so unnecessary.

Confused - I am very worried about work. I have been out of work raising children for 11 years. I did a load of retraining and voluntary work to try to get a career but I am watching all my perfectly fit and healthy peers having to apply for job after job after job and getting a series of temporary contracts in jobs they are massively overqualified for and just thinking 'who is even going to want to give me a chance?'

Fab - I relate to feeling like people feel I am stupid too. I do get brain fog and vision problems with my MS as well as fatigue. Something as stupid as someone leaning over me playing solitaire on my phone and pointing out 'what you should do' just makes me feel hopeless.

Generally I just can't work out what I should feel do or say or how I want it to be handled, I'm aware that probably most people can't do right for doing wrong because I don't even know at the moment so I'm just trying to keep things to myself.

I want to be totally independent, I essentially don't want to have this in my life, but I do have it and I have to accept various aspects of it. It just feels like nothing fits together and I am all wrong so I too just decide to not engage.

I have lupus. SLE. As a result of this I have chronic kidney disease and I'm on the transplant list.

I have young children, one with additional needs and who is a wheelchair user. Life was hard enough before I got poorly. It all seems so very unfair! But we get on with it.

I have got some amazing friends. They fall over themselves to help me, take it in turns and communicate between themselves so no one spreads themself too thin, and a just awesome. I am so very lucky!

But. Often I am not very receptive to their company. I am ratty and tired. I don't want visitors or whatever. They get it tho, they just leave me be when I'm not feeling it. But I guess it would be down to me if the friendships dissolved :(

I'm shaking posting this because I never talk about it if I can help it but here goes... I have ME/CFS also OP and just wanted to offer my support.
I can't offer much help though, the people in my life who know, mostly don't get it, my DH used to be very supportive but he's had his own health issues recently and mine have paled into insignificance and are just an annoyance to him these days. An example of other people's reactions is my MIL, "Well I know you like your lie in" Makes me feel like a lazy princess rather than someone with a medical condition.
Most people don't know and just think I'm a massive weirdo for not being able to drive, not attending things, not being able to explain my sketchy employment history. I try not to care but it fucking hurts and is very lonely. I have a baby now and am struggling like hell but determined to cope somehow. I wish you the best of luck, just know that you are not alone.

I have fibro and severe anxiety probably as a result and have no friends left. All I have is DH and DS. I have never felt so alone.

I have Psoriatic Arthritis, Fibromyalgia and Depression & Anxiety as a result.

Nobody (apart from my DH & my best friend) seem to understand how these things affect me. How there are days when I can't dress myself, when I can't make a brew as I can't lift the kettle, how I can't leave the house alone because I'm frightened of falling.

I used to have a wide circle of friends, now I have DH, DS and my best friend (who lives in the next city). I feel so alone, I can go all day without speaking to another adult until DH comes home from work

Have just re-read all your posts, so touching, and so many points resonated with my experience.

I don't mind people ignoring my illness, in fact I'd rather they did. But - similar to you I've had friends using my illness to manoevre me into a kind of therapist role and whiffle on about themselves. I got fed up with that and dumped a couple of them

What Gloria Gaynor said was definitely an important part of what I was trying to say. I have also been pushed into this role against my will! I also don't like talking about my illness much either, but a genuine enquiry once a year might have been nice. Thats not even going into those acquaintances who seem to have zero understanding. I told a nice acquaintance recently that I'd had a hard time recently with unpredictable health (to explain my lack of attendance at some things) and she laughed! I assume it was a nervous laugh, but it could have equally been "you! always messing about!" .

Anyway, its been good for me to focus on this question. To genuinely see the difficult things, and then also to be able to see some of the good things in my life more clearly.

Accepting that I feel lonely and misunderstood but living life regardless ... making the best of things ... if that makes sense ...