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Fearful of stating what I need in social situations.

Discussion in 'Lifestyle Management' started by Bronnie85, Feb 19, 2017.

  1. Bronnie85

    Bronnie85

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    Hi, I'm new to this forum, have avoided using sites like this due to being, on some level, in denial of my illness. But glad that I'm coming to a place of acceptance. I wondered if any one could help me. My question is, do you think it's ok to ask people to speak slower when talking one to one, or in a group setting. I suffer greatly from brain fog, and want to be involved in conversations but come away exhausted, due to feeling overwhelmed. I get so fearful, and wonder if people will think it's rude. I get fearful with also asking people to speak more quietly, I also am sound sensitive. Any feedback would be much appreciated.
     
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  2. hellytheelephant

    hellytheelephant Senior Member

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    Hi @Bronnie85- it is hard to battle with denial. No one wants this illness and 'coming out' and admitting to yourself that you are sick is hard....but this site is full of kind people who know what you are going through.
    My husband and I were having a discussion about this just yesterday prompted by the fact that a friend of ours has learning difficulties and physical health problems, and she carries a card around to show people, that asks people to speak more slowly, not to jump from topic to topic, etc.

    I think it could be a good idea to have a card rather than explaining. For me it is always tiring talking about how ill I am ( not to mention stressful), and can land you in a quagmire of a conversation about treatments/your prognosis etc that you don't always want to be having.
    I think a card could be a good idea for a number of reasons:
    1) it helps the other person know your limits.
    2) it gives people info about your condition without you having to trawl over it ( again!)
    3) it helps the other person know how in their actions/attitudes they can be of help;

    Mine would read something like:
    Hi I'm Helly, I manage ME and Chronic Pain with the help of my GP, but they are long term conditions and I am affected all day everyday. Please speak slowly and don't rush from topic to topic. Please don't think I'm an idiot if I forget my words.Please bear with me if I seem a bit grumpy, if I start to look as if I'm not listening, or if I terminate the conversation abruptly to go and rest. It's not you- it's me..or rather ME! Thanks for understanding.

    If you give people the info and they think you're being rude- then that is THEIR problem!:)
     
  3. Molly98

    Molly98 Senior Member

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    Hi @Bronnie85 and welcome.
    Just a quicky following on from what @hellytheelephant said above.
    There is a website http://stickmancommunications.co.uk/
    which sells all sorts of useful and sometimes quite comical cards for people with chronic illness, that help to explain and get across our symptoms, and let others know if we are suffering, brain fog and need them to speak slower etc, or we are in too much pain to speak or we need time out.
    I do understand how you feel though, I find social situations very difficult for the same reason, I can't keep up, become overwhelmed, I can't filter out background noise, can't find my words and loose my thoughts and find the whole thing exhausting. It really does knock your confidence.
     
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  4. Bronnie85

    Bronnie85

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    Thank you so much for your reply. I have to be completely honest, I wouldn't feel comfortable with wearing a badge. Even though I can imagine that would work for others. A lot of the people that I socialise with know me quite well, so if I explain once then next time, I could just mention something quickly, do you think that's rude?
     
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  5. Bronnie85

    Bronnie85

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    Sorry I mean carrying a card
     
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  6. hellytheelephant

    hellytheelephant Senior Member

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    No it's not rude- speaking it or carrying a card, whatever you feel more comfortable doing.
     
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  7. Bronnie85

    Bronnie85

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    Thank you Hun. Sorry to hear your also suffering with M.E. thanks again.
     
  8. Bronnie85

    Bronnie85

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    Thanks for the link, sorry to hear your also struggling with this. Getting tired now. Thanks again x
     
  9. Dainty

    Dainty Senior Member

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    Welcome to PR! I'm so sorry you're struggling with this. It's really hard for me too. Often I prefer to disappear from social situations entirely than to brave asking for what I need. But then I don't get to socialize. I'm working on this too.

    My understanding of it is yes, it is totally okay to communicate your needs in social settings. Unfortunately, yes, some people will find it rude, because they do not understand or believe it's a medical need, so they decide you're just trying to control their behavior to your whims.

    What I'm learning is that those who find it rude are not generally the kind of people I want to hang out with anyway. I want to hang around people who, when I request something "due to a medical condition", they immediately assume it as valid and do their best to accommodate it. I'm learning to reframe it as an easy way to filter out respectful, consent-aware folks from the ones who are going to be mean to me. :/
     
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  10. SickOfSickness

    SickOfSickness Senior Member

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    Oh, it's good if it's the same people. I don't think they will fine it rude when you remind them :) With some of them a subtle hint might work.
     
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  11. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I think the less you have to explain, the easier it will be on you. You could have two "go to" sentences to memorize:

    1. "Could you speak more slowly please so I can understand you better?"
    2. "My ears are sensitive, so I'd appreciate it if you could speak in a quieter voice."

    If people already know you're sick and have cognitive problems, it will be easier to remind them.

    I had a friend who would scream when she was excited by something, like "Aaaagh" in a very loud dramatic way. This was especially annoying over the phone when it was directly in my ear. I had to keep reminding her "Betty, no more shouting." It took several times, but she eventually stopped shouting/screaming.
     
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  12. Bronnie85

    Bronnie85

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    Thank you so much. This is really helpful :)
     
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  13. mirshine

    mirshine Senior Member

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    I agree with the others. Especially as these people know you a while. I nice friendly explanation, with a thank you for helping me remain able to be social. And a reminder with a smile if they forget in the heat of the moment:)

    I don't get to socialise much because of being oversensitive to noise and visual things. But when I do meet up every now and then this works for me.

    With a friend who is naturally quite loud and expressive, I found that when she couldn't manage to keep her voice down, after asking her at the start (it wasn't intentional, just her natural way) that if I spoke in almost a whisper, she gradually lowered her voice unconsciously.
     
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  14. Bronnie85

    Bronnie85

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    That's really helpful thank you. The embarrassing thing is someone doesn't even have to have a particularly loud voice, or talk particularly fast, for it to affect me. X
     
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  15. mirshine

    mirshine Senior Member

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    Oh me too, but this particular friend after one or two sentences, I felt like collapsing! In a group a general reminder lime, sorry, too loud, or too quick, really sorry, tends to work for me. The rare times I manage!
     
  16. Webdog

    Webdog Nothing left to say

    What helps me sometimes is to just say I have to lie down and close my eyes. When I do this, it's much easier for me to follow and even participate in a conversation. It does put some people off, however.
     
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  17. Bronnie85

    Bronnie85

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    Thanks, you have no idea how much this is helping. I'm sorry you don't get out much. Do you manage any hobbies?
     
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  18. mirshine

    mirshine Senior Member

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    I read. I'm hoping to start strumming a guitar and see if I'm able for a few minutes at a time.

    What about you?
     
  19. Bronnie85

    Bronnie85

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    The guitar hey! Fab :). I knit, read when I can. :)
     
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  20. Bronnie85

    Bronnie85

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    Thank you. I do that too sometimes, or just close my eyes, and rest.
     
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