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shezza
shezza Member Posts: 39
edited 10. Aug 2010, 07:51 in Living with Arthritis archive
This is really hard for me to write but here goes.I have been diagnosed as having soft tissue rheumatism/fibromygalia.
I havent worked for four years and my health is gradually getting worse .I used to be the life and soul of the party when i went out but i have had to slow down considerably and no longer have "nights out".
I have lost friends over the years and even the couple of friends i do have dont understand how i sometimes feel too ill to go out .
Some have decided they no longer want to bother with me because i am now so unreliable,they dont realise its out of my hands ..if im having a bad day then thats how it is .
The thing is i feel so alone ,i feel like no one understands .The hardest thing is i dont "look ill" so people think im either putting it on or its not really that bad .Has anyone else lost friends because of their illnesses?
i have a really supportive husband and that helps a lot but then i feel guilty cos his life is restricted to .
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Comments

  • sunnyhours
    sunnyhours Member Posts: 151
    edited 30. Nov -1, 00:00
    I haven't lost friends yet but the think "I'm making it up" or "acting up" or the most recent one "emotionnally manipulating them"...I guess some people think you can only suffer if it visually shows. However, facts prove the contrary, when you think of a heartbreak, stress/anxiety...these things don't show but they still hurt. They hurt differently just like the pain from RA is different from the pain that your friends inflict you...
    I'm truly sorry and I completely understand what you are going through.
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hi Shezza
    Your story is repeated so often on this forum, people do find it hard to understand, like you say , when you look well they think there is nothing wrong.
    I try and put myself in there place, it doesn't make much difference to keeping friends, but it dose help me understand them, and I dont feel has bad.
    Please dont feel alone, we are always here when you need to talk, this forum has become my best friend in a way.
    You have your OH and hopefully he will understand a little of what you are going through.
    I do hope you will feel easier now you have spoken about it.
    Sending you lots of hugs (((((((()))))
    Love
    Barbara xx
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Shezza

    As Barbara says this thread does crop up quite often on the forum, so you are not alone with feeling how you do. You could google "the spoon theory" and see if that kind of helps you or you could perhaps mention it to a couple of your friends if you felt it appropriate.

    Do keep calling in on here, we are all here to help and support each other so you do not have to feel alone and we do understand, when others perhaps do not.

    Look after yourself,

    Luv
    Elna x
  • roses1
    roses1 Member Posts: 1,850
    edited 30. Nov -1, 00:00
    Hi Shezza,

    I haven't lost friends yet , but if they dont believe you or can't be bothered with you then they are not real friends anyway so you have lost nothing!
    I know how you feel with the fibro and arthur and so does everyone else on here! We all understand because we are all going through it! Everyone here is really friendly so come to where your friends are, who understand what you are feeling!

    Keep your chin up :)

    Rose x
  • chris7
    chris7 Bots Posts: 2,696
    edited 30. Nov -1, 00:00
    Hi Shezza

    Sorry to see you are feeling like this, but it is good that you posted about it. Sadly you are not alone in feeling that way. I do know that the lovely people are here do understand, and some one will alway be around to listen and send hugs. I do hope your friends will take the time to listen and try to understand too.

    take care, ((( )))
    Chris
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Hi Shezza

    Sorry that things are so miserable for you at the moment. Thank goodness you have got a good OH.

    Is there anything the doctor can do for you with regards to medication? WOuld you be able to have hydrotherapy? I found that really, really soothing a couple of years ago, when my RA was bad. Do you use those wheat bags that you can put in the microwave to heat up - again, they are really soothing.

    I don't know very much about fibromyalgia, but there are other people on the forum who do suffer from this and I hope they will be along soon to share their experiences with you.

    Marion
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi have not lost any but do not have that many close ones any way but have lost one that lives away they always expected us to go over there and i just can not manage it these days as you know it when and how you feel that decides where you go and how far but it there loss realy as i have other pals that sort of understand lol but you now have lots of new friends who will look out for you we might not be able to come out with you but we are always here when needed with wise words or hugs you are not on your own fry to look on the positive side the cafe is free on here lol val
  • psyart
    psyart Member Posts: 600
    edited 1. Aug 2010, 08:56
    Hi - i know what you mean about losing friends, as i have lost a few over the past 4 years. But i have also found that i have become a recluse and stopped asking friends to come around as I am afraid that when they come i might not be feeling well and not be able to cope!

    Sometimes I think that people just dont know what to say or understand so they say all the wrong things? I had a friend who's daughter had cancer a few years ago and i remember that i didnt know what to say to her when she tried talking about it - for that i do feel guilty :oops: at the end of the day she was asking for support but i didnt know how to give it to her :oops: . how life changes us :!:

    as others have said - keep in touch on here - we are all here to support you.

    Louise xx
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    psyart wrote:
    Sometimes I think that people just dont know what to say or understand so they say all the wrong things? I had a friend who's daughter had cancer a few years ago and i remember that i didnt know what to say to her when she tried talking about it - for that i do feel guilty :oops: Louise xx

    Hi Louise

    It is very difficult knowing what to say in certain circumstances, but listening is therapeutic to the other person, words are not always necessary. The other person will find comfort in knowing that you are willing to take time to be with them.

    Luv
    Elna x
  • psyart
    psyart Member Posts: 600
    edited 30. Nov -1, 00:00
    elnafinn wrote:
    psyart wrote:
    Sometimes I think that people just dont know what to say or understand so they say all the wrong things? I had a friend who's daughter had cancer a few years ago and i remember that i didnt know what to say to her when she tried talking about it - for that i do feel guilty :oops: Louise xx

    Hi Louise

    It is very difficult knowing what to say in certain circumstances, but listening is therapeutic to the other person, words are not always necessary. The other person will find comfort in knowing that you are willing to take time to be with them.

    Luv
    Elna x


    Hi Elna

    You are so right but unfortunatley I didnt realise this until i became ill myself :oops: I do know now which friends can cope with my 'pain' and which ones cant so watch what i say!

    Louise xx
  • annebr
    annebr Member Posts: 730
    edited 30. Nov -1, 00:00
    I know exactly how you feel, I started a thread along the same lines a few months ago.

    I had a frend for many years & when I tried to tell her what was going on she told me 'to get over it'. Not once when I was in hospital did she come to visit me. I have tried telling her my feelings but it didn't work. We are now like aquaintances, she rarely picks up the phone & we send the occasional email to each other. To be honest I can't forgive what she said or her lack of support when I needed her.

    It is hard for people, someone has mentioned the spoon theory which is good. At least on here people know what you are going through, so keep posting you are not alone.

    Anne
  • tarasmygirl
    tarasmygirl Member Posts: 70
    edited 30. Nov -1, 00:00
    I understand how you are feeling. I have recently been diagnosed with RA and found that one or two people I thought were friends wern't interested in my health, only how it affected them. Decided that it wasn't worth it and resigned from the committee I was on with them as stress seems to triggering flare ups and I wasn't prepared to put myself under the stress of having to justify my illness. Have felt much calmer since I made that decision so I know it was the right one for me

    Hope you start to feel better soon. Remember you have planty of friends on the forum who won't desert you because of your illness
    and who really understand how it feels to have bed days
    Cath.
  • jenfa1
    jenfa1 Member Posts: 42
    edited 30. Nov -1, 00:00
    Sorry that it is affecting you like this. I have RA and have had for 17 years thankfully my days of going out are virtually nil as I have an 8 year old son, but every few months my friends and I swap houses so the girls get to watch a dvd they like and the husbands the same - no babysitter required, although I haven't cancelled yet there is many a time where I can't really be bothered just too tired.

    She is a good friend but I don't think she understands at all what it is like to have RA because she sees me on a good day, bad days stay at home and see no one, when I try and explain I don't feel she is listening, for me at the moment it isn't too much of a problem but I'm not sure if she would be there if I needed her. Sad to say I have learnt that unfortunately not to rely on other people, can be lonely but been let down too much at various times of my life

    Jen xx
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    Hi Shezza

    Yep, I too used to be the life and soul and had a very busy social life.
    I have just had to accept that I things will have to be different for a while.
    Have had a mixed response from friends really.
    Some are so understanding and some have disappeared. Some of the 'disappearees' I was surprised at and some of the ones you stick around I thought would disappear. The stickers I treasure and I blow a raspberry at the others!
    If I try to go out for a meal or drink with people we end up afterwards back at my flat for a get together which means I am not putting too much strain on my body staying out. It seems to work out quite well as I still feel I am socialising. Why not try that?
    Carol
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    We used to have a social life, small but at least we went out. Now we don't. People come to us, when things allow, or we go to them, when things allow. We haven't lost any firends, we just don't see them that often since this accurséd condition descended. Arthritis is tiring and isolating. Your true friends will still keep in touch: those who don't bother are not worth knowing. My husband is very stubborn: I tell him to go to things without me - God knows he needs a break from it all - but he argues it won't be as much fun if I'm not there and so he stays in. Changes and adjustments have to be made to save your strength. It takes time to get used to it tho. DD
  • catlady
    catlady Member Posts: 41
    edited 30. Nov -1, 00:00
    Just read up on the Spoon Theory. Brilliant, have a look peeps, if you haven't seen it already. :lol:
  • catlady
    catlady Member Posts: 41
    edited 30. Nov -1, 00:00
    The Spoon Theory is on Facebook :lol:
  • fairydust81
    fairydust81 Member Posts: 9
    edited 30. Nov -1, 00:00
    shezza wrote:
    This is really hard for me to write but here goes.I have been diagnosed as having soft tissue rheumatism/fibromygalia.
    I havent worked for four years and my health is gradually getting worse .I used to be the life and soul of the party when i went out but i have had to slow down considerably and no longer have "nights out".
    I have lost friends over the years and even the couple of friends i do have dont understand how i sometimes feel too ill to go out .
    Some have decided they no longer want to bother with me because i am now so unreliable,they dont realise its out of my hands ..if im having a bad day then thats how it is .
    The thing is i feel so alone ,i feel like no one understands .The hardest thing is i dont "look ill" so people think im either putting it on or its not really that bad .Has anyone else lost friends because of their illnesses?
    i have a really supportive husband and that helps a lot but then i feel guilty cos his life is restricted to .

    I know I am replying to this quite late, but I'm a newbie to the forums and am still trying to get my head around my diagnosis.

    Apart from the fibromyalgia it almost sounds like me writing your post. I have no close friends, I have other health problems too which have meant I hardly socialise, I rarely drink etc, and I lost a lot of friends along the way.

    I know how you feel and just wanted to say hi and please don't feel alone xx
  • tarasmygirl
    tarasmygirl Member Posts: 70
    edited 30. Nov -1, 00:00
    catlady wrote:
    The Spoon Theory is on Facebook :lol:

    Just read it and it is a really good way of helping people understand how hard it is for some one with a chronic illness to cope each day- thanks for showing the link
    Cath
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi,
    Well if you've lost friends they wern't real friends.....but we all do know what you mean....its and invisiible illness that people think of it as a little ache or pain and dont realise how itaffects us
    The sppon theory is really good

    Love
    Hileena
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    We also grow apart from friends. I have drifted away from some myself, but my very good friends are those that I met when I was 7 years old, at senior school and my second job. We do not live near each other but I know they are always there for me and me them. This amounts to about 5 friends. Others are friends but not in the same way as those that I have known for years. I also have my three sister in laws who come up trumps every time and vice versa.

    Elna x
  • sharmaine
    sharmaine Member Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi Shezza

    Our lives do change when we suffer with arthur etc. I haven't worked for 2.5 years and had to leave my job because of it. I was always on the go - doing things, going places etc.

    Before my first TKR I couldn't even go to the cinema unless I was sure they had a lift! I think what I'm trying to say is that after a while you learn to adapt. We always go out for lunch once a week and it gives us both something to look forward to. Just going to the hairdressers is a treat for me!

    You certainly find out who your friends really are when you are faced with illness. They're not true friends if they can't accept the changes in your health.

    I lost a friend who I really thought was close to me - she wasn't sympathetic and made a habit of flirting with my hubby and putting me down. Needless to say that friendship was demolished straight away. Nobody messes with my hubby! She was thoughtless. Even now it hurts like mad. We moved 4 years ago to another county and I'm hoping one day I'll find a true friend again.

    This is why this site means so much to me. I'm never alone and I've made some friends on Arthritis Care.

    Take care.
    Warmest regards
    Sharmaine



    quote="shezza"]This is really hard for me to write but here goes.I have been diagnosed as having soft tissue rheumatism/fibromygalia.
    I havent worked for four years and my health is gradually getting worse .I used to be the life and soul of the party when i went out but i have had to slow down considerably and no longer have "nights out".
    I have lost friends over the years and even the couple of friends i do have dont understand how i sometimes feel too ill to go out .
    Some have decided they no longer want to bother with me because i am now so unreliable,they dont realise its out of my hands ..if im having a bad day then thats how it is .
    The thing is i feel so alone ,i feel like no one understands .The hardest thing is i dont "look ill" so people think im either putting it on or its not really that bad .Has anyone else lost friends because of their illnesses?
    i have a really supportive husband and that helps a lot but then i feel guilty cos his life is restricted to .[/quote]
  • catlady
    catlady Member Posts: 41
    edited 30. Nov -1, 00:00
    elnafinn wrote:
    Hi Shezza

    As Barbara says this thread does crop up quite often on the forum, so you are not alone with feeling how you do. You could google "the spoon theory" and see if that kind of helps you or you could perhaps mention it to a couple of your friends if you felt it appropriate.

    Do keep calling in on here, we are all here to help and support each other so you do not have to feel alone and we do understand, when others perhaps do not.

    Look after yourself,

    Luv
    Elna x

    I looked up the Spoon Theory, it's even on Facebook. Very good way to help other peeps understand what it's like for an arther sufferer. :P
  • cebeem
    cebeem Bots Posts: 472
    edited 30. Nov -1, 00:00
    shezza wrote:
    This is really hard for me to write but here goes.I have been diagnosed as having soft tissue rheumatism/fibromygalia.
    I havent worked for four years and my health is gradually getting worse .I used to be the life and soul of the party when i went out but i have had to slow down considerably and no longer have "nights out".
    I have lost friends over the years and even the couple of friends i do have dont understand how i sometimes feel too ill to go out .
    Some have decided they no longer want to bother with me because i am now so unreliable,they dont realise its out of my hands ..if im having a bad day then thats how it is .
    The thing is i feel so alone ,i feel like no one understands .The hardest thing is i dont "look ill" so people think im either putting it on or its not really that bad .Has anyone else lost friends because of their illnesses?
    i have a really supportive husband and that helps a lot but then i feel guilty cos his life is restricted to .

    Hi Shezza not got the same diagnosis ......but had similar reactions from people when I have turned down invites etc... At work too I have felt like people think I am exaggerating I put my name down for nights out etc then on the day back out! had unexpected probs a couple of years ago (gall bladder rupture) and needed emergency surgery.. from that point the energy levels were very low... I try to keep up with the high life ....but it takes days to recover just from a late night. So I now enjoy in days, snow days, lazy days...I can keep myself occupied. One of my jobs was working in Physio for many a year....and although no one took me seriously when my condition started, they are now most supportive (so they should be :) ) great support from my husband too!
  • dippydoodah
    dippydoodah Member Posts: 350
    edited 30. Nov -1, 00:00
    Im sorry Im adding to this a little late, but I don't get online very often. I do try to keep up to date with how everyone is but Im a little new to all this myself and often don't offer advice as I don't know what to say. I know there are alot of wonderful people here who each know something.

    Im so sorry you are feeling this way, I don't have the same Arthritis as yourself, Im an OA sufferer but I do feel the same about feeling alone. I have a wonderful OH just like yourself who is supportive to the end but I feel so guilty asking for help all the time. Its been 6 months and Im only just getting used to asking. Ive also had the feeling of people looking at me and Im sure they're thinking 'you don't look ill'. I think that's the worst part, plus Im only 32 so when I tell them I have OA I get the usual 'are you sure, isn't that for old people?' I just walk away... :roll:

    You are lucky to have that support from your OH. I haven't lost friends as such but I have found myself to be 'hiding out' in my house more, not wanting to go out. I don't ask people around in case Im having a bad day and am not good company.

    I know its not the same but if you do need to talk to someone, there are so many lovely people here who actually do understand.

    I hope you do find the support you need to stop yourself feeling lonely.
    Caroline x

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