Do people understand or just don't care ?

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Hi it's Bex again smile

The past few weeks I've been getting a bit down, I'm not sure if it's just me who's feeling sorry for myself or not. I've only told a few people about my ME/CFS and they just treat me like I'm being lazy or making excuses for myself. If I feel really tired or have a bad day, I want them to understand how I'm feeling, that's all. Sympathy is not what I want, I just want them to understand. Am I being unfair ?

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  • Posted

    Hello Bex :D

    No of course you're not being unfair, it just seems that most people who haven't experienced this horrible illness really do find it difficult to understand :roll:

    And when you're feeling awful it's completely natural that you want people you care about to understand.

    All I can say is that on this forum we really [b:ed54036f18]do[/b:ed54036f18] understand because we are all in the same boat :hug:

    There are some leaflets and booklets for non-sufferers which I know some of the other members have used :thepost:

    - I'll leave it to them to tell you about those as I'm not sure of the details

    Take care :rainbow:

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  • Posted

    Hi Bex smile

    Unfortunately you will come across this problem all too often sad

    In fact it should be put down as yet another symptom :roll:

    You will find that peoples interest in your illness also wears off as time goes by - if only our illness wore off as time went by too :roll:

    The only people who can and do understand what you're going through are other sufferer's like us - which is why i virtually live on my laptop :D

    We are here for you whenever you need advice and support, laughter and friendship :wink:

    Several of us are actually having our worst ever episodes at the moment so it has been a little quiet at times, but theres always someone around :P

    You can come to us whenever you want - the more the merrier :lol:

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  • Posted

    Hi Bex, most people i have spoken to about M.E have known someone with it so it makes it easier.

    Unfortunately some people are ignorant and don't understand. I must admit before i had this illness if someone had asked me what it was i would have thought it was just a tired thing.

    Having the illness really opens your eyes.

    I just hope the people that matter to you understand.

    Take care :D

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  • Posted

    I was just speaking the other day to someone, they asked me if I was still off work, they said you look so well so what's wrong with you :?: When told they said rihjt so you just feel tired all the time. :cry: It gets no easier we can't get educate everyone. :roll:
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  • Posted

    Yes, Lou .....it's the partly due to the fact that we [b:032b37d2a6]mostly[/b:032b37d2a6] look so normal .... but of course when we are really unwell it's only our nearest and dearest who really see us at our worst sad

    Bex, it's nigh on impossible to get others to understand how we actually feel, and it's just so exhausting trying to explain that most of us have given up bothering ........ :zzz:

    And of course the fact that often every day is different doesn't exactly help :roll:

    Just stick with your friends on this forum ..... at least we all understand your frustration and we can all share in each others ongoing exasperation sad

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  • Posted

    Bex, if you would like me to send you a leaflet produced by the National ME Centre entitled 'A Guide to ME for Non Sufferers' just PM me your e mail address and I will send it across to you.

    It is excellent, as some of the others will testify. The hard part is getting people to read it. If they do, it is quite an eye opener for them.

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  • Posted

    I briefly met an old friend yesterday who was wondering why she hadn't seen me around town (usually in my gym gear) for ages. (two and a half years to be precise :roll: )

    I replied that I have been suffering from ME, and she said .... 'Oh, there's a lot of it about these days' ..... end of conversation :lol:

    If I hadn't laughed, I would have cried :evil:

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  • Posted

    bex, im afraid this is something that you'll come up against :roll:

    a lot of people i know have known someone who's had this, which is great, but for the ones who dont its almost like ive had to teach them what this is, which is of course exhausting! :?

    i cant remember if you said you'd been referred to a specialist clinic or not? this may help you deal with your own and others perceptions of this horrid old illness.

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  • Posted

    I've not been referred to a specialist, my Doctor is still waiting for a report from the hospital which is taking time to come through !

    Even my partner doesn't seem to understand how I'm feeling. He has type 2 diabetes and I always help him and try to be understanding - and I assumed he would be like this for me. All he says to me is 'we all get tired' and that's it.

    My friend is just the same. When I'm not too good she asks what's wrong and when I tell her, it's like 'oh OK'... end of conversation.

    Thanks Katie K for your advice - I'll keep coming back to the forum and chat to all my new found friends here.

    [color=olive:8e78cad403][i:8e78cad403](Sorry but Patient Admin have removed either a name, telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

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  • Posted

    I know how it feels trying to explain how you feel I have given up as most folk just want to hear your fine I only tell the truth to people who understand thats why I' m so glad I've found this site as it's like if you haven't got a bandage or plaster to show you must be ok take care
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  • Posted

    my new housemate is very nice and i like her a lot, but she really doesn't get it either no matter how much i explain. she keeps asking me if i want to come to salsa lessons or swimming with her, which breaks my heart as i really do want to! :wah:

    im so grateful that she and others keep inviting me out because some people have given up, but its so depressing having to say 'sorry i cant...' sad you start feeling like a really boring person after a while...

    ah well, thank goodness for everyone here :D

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  • Posted

    It is so hard to get people to understand isn't it neutral

    I sometimes wonder if we should make up a nonsense but impressive sounding Latin name for ME and tell people that it is a debilitating illness with no known cure :wink:

    I suspect that we would just get greeted with a puzzled \"Oh really\" but at least they hopefully wouldn't just think we were lazy :cry: :D

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  • Posted

    You hit the nail on the head there with the plasters and bandages, unless people see that, you must be ok :x

    Tha main thing that annoys me is when i say i feel so tired i could fall asleep right now, thay say 'oh, i feel like that also'

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  • Posted

    i know james, its sooooo annoying isn't it! :x people say to me, ooh ive felt like that for years, maybe ive got ME. :roll:
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  • Posted

    Arrgh ..... don't get me on that one :evil:

    Some while ago I gave a friend (well she was at the time) a list of all the horrible ME symptoms ....... she read them all out loud and after each one said, 'Yes, I've got that, and that ...... and that '...... and then laughed out loud ..... 'Oh, I must have ME too then' and laughed again :evil:

    I very nearly tipped her off the high stool she was sitting on :evil:

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