Last reply 2 months ago
Talking about MS

Dear all, I know this is not a new topic but I am just really struggling with how to articulate and describe that I am experiencing physically and emotionally with those closest to me.

I am met with so many ‘you look so well’ ‘you’re doing fine aren’t you’ and ‘you’ve not got any issues long term have you’ even from those who have seen me at hospital ridden worst!
I just give in and say ‘Im glad I look well’ because any other answer just feel like I am trying to justify myself – how silly is that?!? I am just so fed up with feeling so alone with it.

Anyway… as always I am seeking your advice on the best way in which is approach these well intentioned remarks and explain those pesky hidden symptoms.

Petal xxx

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ilyssa19
2 months ago

Hi Petal, I deal with these remarks on a constant basis as well. I deal with each situation differently depending on the context. Usually, I try to explain that just because MS can be an “invisible” illness does not mean that I don’t have it or that I’m feeling great. I like to think that most people do not mean to be harmful or rude with these comments. They may not just understand what MS actually entails. Usually, I end up pointing out that MS is a disease that is so unpredictable- it needs to be taken day by day or even hour by hour. I think it’s best to stay calm in these situations even though they are very irritating. Unfortunately, these comments do not go away. Hope this helps!


edmontonalberta
2 months ago

@petal87

Why would you feel the need to explain to others what you are experiencing physically & emotionally? What would that solve???

My philosophy is simple. I explain what I need to continue living my life as normal as possible. For example, I need a seat near the toilet in case my bladder gives me “30 seconds or less”; if I walk away in the middle of a conversation – it is nothing personal against them.

When I am walking, please do not walk beside me or behind me – if you clip my foot, I am going down… To put it in simple terms – I set parameters so they don’t hurt me or embarrass me. Friends appreciate & respect that.

And that is all they need to know…


stumbler
2 months ago

grandma
2 months ago

Get a copy of Stumbler great post, he admits he got it from somewhere else, but it us very evocative, i.e., try tying lead weights round your ankle etc, get your family/friends to read it, they may then have a better understanding😍


stumbler
2 months ago

@petal87 , here’s a link to the post mentioned above by @grandma :-

https://shift.ms/forums/topic/describing-your-ms-symptoms


petal87
2 months ago

As always thank you all – that doc from the MS trust is particularly useful @stumbler

I think at times it just trying to find the right words to accurately describe what you are feeling. I’m guilty of always trying to play it down (esp with regards to work) and then get upset when I struggle and don’t recieve the necessary support I need. So @grandma that thread is helpful 🙂 x

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