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.

What I am asking is how other people deal with or have dealt with this ... I think its becoming a difficult issue for me, the isolation aspect.

I have chronic pain which is a bit similar. I have worked very hard to keep my friendships going because without them I would be extremely isolated. I am the one who makes dates quite often and makes suggestions about what might work, I also have to ensure that they know ( as they obviously do now) that sometimes I have no choice but to cancel.

When we are together I make a point of not mentioning my pain very much although it is fairly obvious from the way I walk etc. I'm out to have some fun or at least a change of scene and company. I ask about them and keep up with their lives and they do the same.

A few people have fallen away for sure but I've also made some unexpected new pals. Although you don't want only friends with your condition it can help to get to know some people in a similar position either in RL or online. I've done both.

It's hard work and I think I'm clear that sometimes I need to talk about my stuff but mainly I just want a touch of real life.

Yes the real life thing, MatildatheCat! I am just wondering if in my kindof desperation for even a taste of it, I've been putting up with quite a bit of rubbish from friends who barely acknowledge my illness. Even my very closest friend(s) never a straight conversation on the subject, which I honestly find a bit weird. Anyway all this pause for thought really.

Hi op. I'm sorry to hear you are struggling with this. I too understand your situation, I have quite complex health issues that are on going and draining.
Over the years it's been hard to keep friends because they have often judged me on the days I'm down and struggling. People think I'm being ungrateful. They say but look at your lovely family etc etc. Avoiding the fact that actually, I've spent the whole bloody afternoon at an apt then waiting to get my bloods done and have to drive 25 minutes home in the dark. I've eventually cut out the people that judge me based on my 'fresh make up application' and normal looking life. In the end we have to look after ourselves, and the people who are genuine and caring will stick with us. Don't get to the point where you are not looking after yourself to maintain these friendships; you come first and so does your health x

Hi OP,

I, too, have ME/CFS. I'm bedbound and a two mile drive to docs and back will render me bedbound for 48-72 hours, I went to docs on Friday and slept until 4pm today. Excruciating pain throughout body. I use a wheelchair.

I was dxed seven years ago. As soon as my "friends" saw the level of disability they vanished within days, not replying to even texts/emails. The only person to support me in this hell are my DW and DD.

I just wanted to let you know that you're not alone and it's frighteningly hurtful being so bereft of external friendship. Will be following this thread closely.

I think people find these types of conditions difficult to relate to. After all, everyone suffers pain occasionally or "feels a bit tired".

I do find it difficult to maintain some friendships, it's been 6 years now, and I've left some friendships by the wayside. The ones I'm left with are amazing. They understand that I can't always manage what they want to do. That sometimes I bail at the last minute. They ask me if I'll be able to manage the walking / driving for what they are planning. They will offer to help if they can. It help that there is another spoonie in one of my friendship groups, the others have been able to adapt for us.

What I find difficult is making new friends. I don't look ill to other people, if they didn't know me before, and I'm not one to overshare personal information with new people, so I guess I can come across as aloof or unreliable. Or maybe just plain lazy

I can't work and my children are older, so I do feel isolated sometimes.

How long have you been ill OP? It takes a while for other people to adjust their expectations, even family I've found can struggle to understand.

Sorry this turned out so long!

Quite simply i've just made friends with other sufferers. No one is going to get it, not properly. Having a really strong core group of friends has allowed me to be more relaxed about making friends with people who don't get it because it's isn't such a catastrophe if we aren't that close or live very different lives.

I met my friends online 10 years ago. There are so many ways of doing so now. I love crafts so reached out to people online who enjoyed crafts but who were I'll. It was more positive than a support group for me.

It is very very tough being chronically I'll and lots of people struggle with friendships. It's so difficult just surviving. So be gentle with yourself

Oh I've heard that bollocks on many occasions! "We ALL get a bit tired/need a nap/have a twinge of pain every now and again." I have Progressive MS and take a cocktail of painkillers meds every day just to function. I also get terrible Fatigue. I lose the ability to speak during these episodes. I also lose a lot of cognitive function which is incredibly scary, but it does return: so far. It's incredibly hard to plan socially as I'm at the mercy of my condition. Pretty much every friend I had just walked away. I've always been very self-reliant and have found many REAL, understanding friendships online. Some of those friends have chronic illnesses, some don't. I don't feel obliged to 'pep' myself up online. I can be an utterly miserable cow if I like! There'll always be someone around to either let me vent or give me a virtual slap across the chops. I've learned confidence in those friendships which carries over to the'real' world. It's made me more open about my expectations of friendship too. I've felt way more isolated than I do today when I was able-bodied. I do what I can and I enjoy the life I have for the most part.

Can I comment from a friend of a person with chronic illness point of view?

My friend, a wonderful, funny very intelligent interesting, kind a thoughtful person has a multitude of physical and mental health problems, severely disabling problems.

I am the only friend out of a large group of friends who has kept in touch on a regular basis with her.

For me, I treasure our friendship, wouldn't turn away because she means a great deal to me.

Our mutual friends, I know find it either too difficult, too much effort involved or worry that she will want something from them. Many feel they no longer have anything in common with her.
While I understand this, I feel crushing guilt that I can't/don't do anything for her BUT here's the thing, she never ever asks for anything. A brew, cake and chat about shite, her illness, our kids, the news, how fat I'm getting, how crazy she has been the last week is all she wants. Normality,
Not hard, NOT demanding.

Now though I'm worried that I talk about myself!!!!!

Interesting thread.

I have recently been diagnosed with MS and have similar experiences to you.

ATM I am really struggling with what I should feel, do, say etc with friends and family.

I have ended up just withdrawing in a bid to avoid it all or pretending I am fine and facing the consequences after.

But quite honestly I am really quite profoundly depressed about the whole thing really. The one consolation is the gateway to dignitas that the diagnosis has given me if it gets too much. Have not found anyone who can relate to that feeling within the MS society or outside it TBH.

Just generally found ppl eager to tell me all the things I should appreciate - the kids (I never wanted and from awful relationships I have to be responsible for managing, but they are lovely though), the fact my symptoms are better than some other people's, that I don't have cancer etc...

A bit different but I found out who my friends were when I recently had cancer. Fucking hell, it was a shock.

About a handful of friends simply disappeared overnight. People say 'ah but illness frightens people, they don't know how to handle it'. And I do? Do they think I stood in the cancer queue bcs my life was getting a bit dull?

Anyway, excuse rant. It was a very, very difficult time to find out who your friends are. The friends who DID tip up were very surprising. People I wouldn't have expected at all. I think the common denominator is people who have suffered themselves.

I can agree that all I wanted was to know people cared. That's all. No big deal, no big tasks, just to show they cared. One friend sent me a card every week (too far away to visit) in which she chatted about this and that, minutiae. It meant so much to me.

I got my friends in the cancer community. Immediate bond, immediate understanding, no judgement.

Actually Offred I do understand your point of view. For some people a diagnosis of MS feels like a death sentence or the worst thing in the world. The thoughts of what they may eventually lose of themselves can consume their thoughts, attitudes and lives. I personally don't feel that way but I certainly wouldn't judge someone who did. It does make me feel a sadness though.

Ah sorry to hear that springy, didn't realise

About a handful of friends simply disappeared overnight. People say 'ah but illness frightens people, they don't know how to handle it'. And I do? Do they think I stood in the cancer queue bcs my life was getting a bit dull?

Completely agree with this, totally and wholeheartedly. I understand and empathise with the wanting to avoid the whole thing for fear of making things worse or because of your own fears about illness but it doesn't make it any better to wake up one dealing with something awful and realising you are now being avoided or the other thing I have struggled with - trying to be the one who helps other people come to terms with your illness and how it makes them feel.

Another severe sufferer of M.E/CFS here, I lost most of my friends when I first became unwell 15 years ago. We were young and they didn't know how to react, or what to say. It was hard and upsetting, but I guess understandable..... I recovered and met my dh, I still had one friend who kept in touch. When my husband and I married, she was my bridesmaid. I went through ten years of relapses followed by periods of remission. Some remissions longer than others, we had our two children and my illness was generally stable, as long as I carefully paced my activities. I had great support from my family and my dh especially.

Until five years ago when I suffered a period of paralysis followed by extreme weakness which left me unable to walk / wheelchair bound. I had made local Mum friends and they disappeared, apart from on facebook. In fairness chronically sick people tend not to make the best of friends, all my energy was conserved for my dh and my children. My dh became my carer and took over everything with our children who were 4 and 2 at the time. My health continued to deteriorate until I couldn't hold my own head up and couldn't sit up without my heart going tachycardic, leaving me bedbound for the last two years. I have developed a neurogenic bladder and I am now permanently attached to an indwelling catheter. I do now have a lovely friend who visits every week, she started visiting as a volunteer from the charity home start. She would take me and my children to a local toddler group and as I grew progressively worse she would come to visit me.When my daughter started school she was meant to stop visiting, but we had grown so close that she has continued to visit, she is a true friend and I very much value her visits, even when they leave me exhausted.

I have had lovely carers who I have employed through self directed payments and they have become wonderful friends too. Yes they are my employees but they are also my confidants! They are also good at recognising when I am needing to rest,which is very helpful!

I have also kept in touch with many friends through Facebook. I'm part of several groups of fellow m.e sufferers on Facebook. Being able to talk to fellow sufferers is so helpful! Only another sufferer can truly understand the impact that this condition has on you. Ultimately though, my husband is my best friend, he keeps me smiling and still treats me like me, which I think is amazing and I am truly blessed to have him !

I want to add that I am responsible for the demise of any friendships, I am too tired to phone my friends, I arranged to meet up only to have to cancel because I was too sick. I have forgotten friends birthdays, I haven't had the energy to send Christmas cards. My husband has taken over that duty since I had been too sick to send cards for two years running. I don't have much interesting to talk about, my life is pretty much groundhog day. So I really don't blame my friends for just giving up. To stay dedicated to someone as chronically I'll takes love and courage. I say courage as watching someone you love deteriorate as much as I have is incredibly upsetting. I have two brothers who don't visit because it hurts too much to see me be as sick as I am. I get it, to see someone you love go through so much, is distressing! I see it in the eyes of my children, my husband, my family and even my carers. One carer nearly left as she was physically hurting seeing how much I had declined. If the people closest to us struggle seeing us like this, then of course it is too much to expect from an acquaintance. I feel lucky to live in a time where I can communicate with other sufferers, the internet is a lifeline that makes such a difference to my life.

Fubar - I think it just helps me massively to have someone actually understand and validate how I feel about my situation and not anxiously trot out platitudes about it being different when I have come to terms with diagnosis (I know it may be) or tell me all the reasons why (as I see it) I shouldn't feel the way I do right now.

For me it is not so much that I feel it is a death sentence but more that I don't feel ATM anyway I am prepared to live my full life expectancy with an expectation of having to cope with unexpected and varying disabilities. I do not want that life.

And I know I do need some counselling to work through the diagnosis... I haven't been mentally or physically well enough to arrange it this week though. I broke down sobbing that I couldn't properly chop the garlic for tea yesterday after spending literally a whole week asleep for about 18 hours of every day and that 2 weeks ago my ten year old had to support me physically while I walked 10mins to school.

I do understand that objectively I have it brilliantly in comparison to others. Subjectively that doesn't change how I feel about myself or my life though.

But just thank you for starting this thread... it has come at just the right time for me even if I don't pick up anything re friends and family... just complaining and knowing other people understand is a massive deal.

And mummy to you too.

The internet is great as you are on a par with everyone else here I find. No being 'the disabled person'...

I think friendships are odd things

Generally they are built on "me toos" (e.g. "do you find.." "Me too" or "fancy coffee" "me too") and shared experiences, when you become ill there's less me toos because you're on different paths, youre doing different things and experiencing the world in different ways. Often at a time when you haven't the energy or inclination to find new me toos. I think often friends find you're on such a different path they have nothing to add, which I think sometimes is a bit disconcerting to them

Sometimes support groups can help because you are more likely to find other people on similar paths as you. Sometimes the support friends give each other can create new shared experiences.

My EDS is kicking my ass and I needed to read this today.

I have Crohn's disease. You really learn who your friends are when then bad stuff happens (this doesn't just apply to illness). The people who are truly worth it will stay friends with you. I have been dumped by mates and by a husband because of it. Their loss, not mine.

I don't know why I posted, I just had to . Thanks for all your sharing. It can be so hard, we have to be strong, and yet allow ourselves to be weak. to you.