I've now been diagnosed and off work for 4 years and so many of the people I thought were friends (old work colleges) have slowly but surely melted into the back round. This makes me really sad as we used to have so much fun, there is no reason why we couldn't still meet for lunch from time to time or go out but the activities everyone is doing seem to be for completely able body persons only ;-( The lunch time meetings have almost completely disappeared and I now no longer get invites to evening activities but I can see what they have been doing (without me) on Facebook and that really hurts. When I mention this to them there is always an excuse and when I delete them off Facebook they are upset. What am I to do.
Sorry peeps for the rather sad rant and today I should be happy, I've finally been moved to the "support group" for my ESA without any hassle, which means I can now get my benefit again which I so desperately need.
Anyway.............................. sending lot's of gentle angel hugs to all you fibros out there xxx
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Eule
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Understand fully where you coming from as think maybe a few have lost interest in many social events or regular get to gethers etc and losing friends too.
there is absolutely nothing wrong in a rant i never shut up on here hahaha. I just think that give space and breath and forget those who do not want to be in your life or understand whats going on. If you have already told them and they still keep away then they are not really friends.
I do not get half the attention i used to on FB as friday nights were fun nights music and sillyness and now i hardly play out except make odd comments. I spend more time on here !
I look forward to a reply or helping some one with their issues.
I have lost friends but that is their loss not mine they obviously were not true friends!!!
I used t go dancing in pubs etc couple years ago so now i sit like a gnome in my garden when its nice enough in my big pink fluffy dressing gown doing a big fat ZERO (nothing) lol
I still work i earn enough for me to live comfortable with my family and now i have had to take a huge cut in that just to keep work going,
i like to just get on with work i do not really have it in me anymore to sit and conversate with some of them (not in a bad way at all) but as i feel rough and just want to get done and go really. Sooner i get home to flop the better.
Putting that smiley smiley face on is quite difficult (fake) .
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx cazzie xx
Hello Eule, unfortunately what you are saying is only too common with Fibro. We hear about this all the time from members and I can relate to it on a personal level too. I had a large group of friends, lots of work colleagues too, we used to go out regularly, have girly nights too. I started cancelling the odd night out and then cancelling more as I became more ill and slowly the invitations eased off and then stopped altogether. I found it so upsetting as some of these friends were long standing and I thought we could tackle anything together.
I agree with Cazzie above, I wonder if my friends were ever friends at all really as they dropped me like a hot potato and didn't listen when I tried to explain my cancellations were nothing personal, it was because I was genuinely ill.
When I felt well enough I joined support groups, one local to me and met some Fibro friends that way. I stopped going after a year and a half as it got a bit heavy, we didn't seem to talk about anything else and I need that in my life to know there's a world out there too apart from me being ill.
I found taking on new hobbies or things of interest helped me. They were things I wouldn't ordinarily do had I been well, more sedate things. It's hard adjusting to big changes in our lives but it is possible with time. We have to reach that place of "acceptance" first and that's the tough part! It takes some people longer than others to get there.
Joining this forum is a good move too Eule, it puts you in touch with like minded people who above all else understand how you feel without you having to explain. We are all here for you on good, bad and indifferent days, so please know that you are never alone here. We are all in the same boat and we all care about you. Take care, here's a hug (((x)))
Same sad story from me as so many here. My family too have days out and don't invite me, no matter how often I have tried to explain and how upset it is to be left out.
My work & union colleagues I expected to be supportive as supporting members who become disabled was a large part of union work. At first I could join them for a few hours, then less and less, then no invites at all.
i and many others appreciate your company here, even if it is at a distance. The best part of that being that we are all in our most comfortable places.
I lost all my friends within about a year of me getting ill, I was upset for a while but then I realised that I was better off without people who would leave me to catch up on a night out and roll their eyes when I couldn't run or drink etc.
I now have true friends, those people who except me for who I am now and I am sure you will find new friends to.
Hi everyone, i unfortunately also know where your coming from, ive never had many friends but the ones i did have are all off with new friends, if i put a family pic on facebook they comment on it yet they never bother to txt and catch up, im blessed to have a really supportive husband and 4 loving children, sometimes i try to hide my pain in case they get sick of hearing me moan but there are times when you just cant hide it. I find this site a real godsend and this is my social life- my main activity now is facebook, thank god for my mobile xx
I know exactly what you are saying too. Within a short time of having to give up work, all my old colleagues just melted away. What hurt more was that the friend I (thought) I was closest to started to withdraw when I told her I had been diagnosed with Fibro, and I saw much less of her. But it got worse. I had to tell her I had breast cancer - over the phone because I hadn't seen her for a couple of weeks. I have neither seen nor heard from her again since that call. The messages I left for her to get in touch went unheeded. Now, I was founding secretary of our local Fibromyalgia Support Group at this time too. I had to give up the office in order to undergo my treatment. All seemed very supportive to begin with, but after the arrival of a bunch of flowers and a card, I have not heard from any of them since. I was unable to get to meetings for a long time because I was just too ill, and as not even the Chairperson of the group bothered to contact me to see how I was, I decided I really did not need these people in my life. I was disappointed in my fellow fibro sufferers, so it seems that even sick people dont 'get' other sick people. I have one true friend (and possibly the one person whom I least expected it of) who has stuck around and supported me, so that is enough for me. Don't be too disheartened - its their loss, not yours. They are not worth your time worrying over it. Real friends will out.
I too am in the same situation. Friends or so called
Friends say on Facebook that we should meet soon
and then I see on FB a few weeks later that the group
of us who used to always go out together have already
been out minus me. Do they not get it that I see the
pictures and comments they all post afterwards? Or is it really
that they don't even think that it hurts? I know what I
think, they just say we will meet so they can then put
it out of their minds and forget me. I am so glad I have my
loving hubbie, daughter, son in law and grandaughters. They
are the only true friends I need.
I didn't realise this would be as common of a problem as it was, I was going to post something and ask if other people had a similar experience but just kept thinking it is prob just me. My family have days out all the time without even asking if I would be interested, when I say its upset me they just say well you would be too sore to go so we didn't think you would be interested. OK fact is yes I prob would be too sore, but it is that assumption that I am not fit and healthy enough to do anything with them any more that I found upsetting, and I give up saying anything now as I feel really childish saying it!
As for friends I have cancelled on them that many times I just think they are fed up of me and have given up, I know it is coz they don't understand but it hurts me that they don't try. Since I have been like this I have not had one of them call over to my house to see how I was doing, or even call me up on the phone to have a chat. It is just like as I am not fit and able to go and see them, (I was always the one to arrange meeting up with them) they do not want to go out of their way, or they think I am just being rude by keeping on cancelling!
I have only had this for a year and feel like I have lost an awful lot just like everyone else on this sitexxx
My mum had what she thought was a really good friend, they went away together for holidays, evenings out, lunches and then mum fell and broke her hip. This 'friend' didn't come to visit her at home once. Same with my husband once he was disabled in a car crash, those we thought were friends couldn't run away fast enough.......one or two were wonderful tho' and not particular friend prior to the crash.......there are some funny people out there!
I know the feeling they don't know how to act around us I got that from the horses mouth as it were its what 1 of my so called friends said when I asked them what was up with them, I have 1 true friend I've known her for almost 25 years we don't see much of each other as we live so far apart but I am having her son for 2 weeks while the rest of the family is on holiday as he's at college .
hi everyone i do not understand why but it seems so many people can't cope with illness or disability, its almost as if it is catching.they simply do not understand that you are still you and you need to do things differently and in your own time and at your pace, hugs to all Jx
Goodness me and there was me thinking I was a special case, but you're right in a lot of cases by the looks of things the one person who sticks by us is the one we least expected it off.
Thank you all so very much for sharing this with me, I don't feel quite so alone now and thank God for this site and all of you.
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