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Thread: Should I be bothered?

  1. #1
    Forum Member Lynne K's Avatar
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    Should I be bothered?

    My husband is wearing his MNDA t-shirt about (got for supporting the Bury 10K last weekend).

    He's just gone to Asda which is good to bring attention to MND in the hope of getting more people involved. This doesn't bother me. But wearing it near to our home does. Isn't it my decision who I inform? He announced to people we know soon after I was diagnosed and without asking me first.

    What do you all think? Thanks. Lynne
    Last edited by Lynne K; 21st September 2019 at 17:45.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #2
    Forum Member Kayleigh's Avatar
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    Hi Lynne,

    I don't think that your husband should be telling people about your diagnosis without your permission. However, it sounds like your husband is wearing the MNDA t-shirt with good intentions, to raise awareness of MND rather than intentionally trying to upset you.

    I can fully understand why you wouldn't want people to know that you have MND, unless you are happy for them to know such personal information (I am the same). However, it might not have occurred to your husband that wearing the t-shirt potentially gives the neighbours etc personal information about you, that you might not want everyone to be aware of.

    I don't think there is a right or wrong answer to your question 'should I be bothered?' because you should be able to express your true feelings about this issue and, whether you are bothered or not, it is a very personal decision for you to make.

    Perhaps share with your husband how you are feeling. He might be so enthusiastic about raising awareness of MND (especially after the success of the fundraising event last weekend) that he might not think wearing the t-shirt could potentially cause upset for you.

    I hope your husband takes into account your feelings, even if you ask him to not wear the t-shirt so close to home.

    Love and hugs,
    Kayleigh x

  3. #3
    Forum Member Barry52's Avatar
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    Hi Lynne,

    We will all have different perspectives on this but I believe partners should be aware of each other’s views and respect them.

    For me I want other people, including strangers to know as it saves embarrassing situations such as when they think you are drunk because of the way you speak and walk. My wife knows this so we have an understanding. I suspect your husband thinks he is doing our cause a favour but if there is any part of what he does offends you then you should say so.

    Barry x
    Im going to do this even if it kills me!

  4. #4
    Forum Member Gillette's Avatar
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    Hi Lynne,

    I can completely understand you wanting to keep your diagnosis private. I wonder if your husband feels that he needs people to know? When a husband/wife/partner cares for someone with MND it places a lot of responsibility on their shoulders which can feel like quite a burden sometimes. Perhaps he gets a feeling like that sometimes and needs to know that there are people nearby who know the situation. It's not that he needs them to do anything but maybe it helps him just to know that others are aware.

    There are obviously any number of explanations for his behaviour - this is just one suggestion.
    Dina

    Trying to keep positive, but not always managing.

  5. #5
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    Hi Lynne,
    I don't have a wife or partner so I am probably the wrong person to give you an accurate response. But the responses you have had from the other forum members appear spot on. I am sure your husband is just trying to be very helpful to you. We are all different and it is understandable that he is maybe unaware that you don't want some people to know about your illness. So, I guess you are entitled to break that news to him but, just do it gently as, like I said I am sure he is just trying to be helpful.
    As I have mentioned in other posts I live alone and feel very isolated and wonder how I will cope in the future. So it is extremely positive to have a helpful partner. And caring for a relative is very difficult to get 100% right ( as I experienced caring for my elderly parents. It is human nature that nobody is perfect. Take care.

  6. #6
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    Hi Lynne!
    This is the one thing I also struggle with. The only people we have told is my son, my brother, one close friend and our dentist! Now with Christmas coming up, it is going to get awkward, people coming round etc. We don't really get on with our neighbours and if any of them found out, I am sure they will have a field day!! I live in a small village, so everyone knows your business and anything confidential gets spread around like wildfire! I have isolated myself really, my voice has more or less gone! My husband wants us to keep quiet but that's going to be easier said and done!! Not helped my numerous visits by nurses (decked out in uniform) etc. Those net curtains twitches like crazy. It is a difficult one.
    Best wishes
    Sheila

  7. #7
    Forum Member Lynne K's Avatar
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    Thanks for your reply Sheila. Sounds like you know where I'm coming from. I've always felt uncomfortable being watched and now with the neighbours and others knowing I'll feel watched and uncomfortable every time I go out of our front door. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  8. #8
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    Yes, I do know what you mean. Everyone is different I suppose. But I can't even go out in my electric wheelchair, no one has one around here. Some of my neighbours are in their 80's running around all day, if they found out about me, well the gossip would be never ending. We might even move. Maybe town life would be better.
    Sheila x

  9. #9
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    Hello Lynne I would agree that you need to ensure he knows your thoughts and feelings too, not all good intentions are good, try to be honest with him. My Fianc lives in a very small rural curtain twitching village lol and since being diagnosed he’s told everyone we see on a day to day basis, which I understood as otherwise the tongues would of been wagging lol however I went to a fund raiser recently and someone who isn’t normally a gossiper said “ I hear you’ve not been very well” to which I replied “ Really, no I feel fine, you know how it is, old age catches up with us all “ they had nowhere else to go, I’m originally a scouser so I’ve got that little bit of fire to beat someone at there own game lol however not sure how easy that will be with my voice banking lol

  10. #10
    Forum Member Lynne K's Avatar
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    Hi Hayls, from another scouser. Not lived in scouse land since 2002. Some of my family still there, some in North Wales, some near to me in Radciffe/Bury and some in Macclesfield. The internet is great for keeping in touch isn't it �� Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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