Multiple Sclerosis (MS) Support Group

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malinaC505 09/09/2012

my boyfriend's facebook friend posted a long, and very dramatic post about having psychological dystonia, and being put on baclofen.

now, i don't have a problem with her venting at all, and think she has a good reason to do so, but what my boyfriend sent me about the comment was quote:

you should feel lucky yours doesnt do much to you
having owwies here and there isnt bad...

end quote.
it hurt a lot to hear that, not trying to say ANYTHING demeaning towards the girl with dystonia obviously, cuz thats awful - but i my neuro and i actually considered the pump about a year ago, and obviously ms has a lot of symotpms that i dont have to list here

i don't know how to talk to him about how it offended me, especially without getting defensive sounding, you know? i'm pretty open with him about all of my symptoms and currently having worsening stuff, blah, i think that's what makes his comment harder to brush off.

i obviously need to talk to him about why it's hurtful, how do i do that diplomatically?

almairis 09/09/2012

Hi

It's awful when other people comment about personal things. Maybe you can tell him you wish your personal life out of face book.

Whenever someone takes pictures where im in, I tell immediately I don't want my picture on FB. I always make the disclosure, it's engraved in my kids memory.

My daughter recently had surgery and she was posting everything, when I went to the hospital, on my way there I was reminding them,,, I dont want this on FB.,,, LOL

I think people don't realize casual things are ok, but thats it.

Hope he understands and keeps your personal stuff just that,, personal.

Alma

deleted_user 09/09/2012

I defiently think people post too many personal things and inappropriate things on FB and other public forums and websites for that matter. Some people think nothing of it though and that it is fun and just a way for them to get some attention. You will need to talk to your boyfriend and help him really understand how you feel about posting personal things and hope he understands and respects you enough to do as you wish. Friends should do as you would like that is being a true friend.

deleted_user 09/10/2012

The first 2 replies addresed an important part. I want to address the other question. Is he knowledgeable about exactly what you go through? We have more than owies...now and again. Sincerely let him know you feel bad for this person he mentioned to you Without a confrontaton, tell him there is something you would like for him to read. Let him start reading some of the discussons and problem MS"ers really have. If you are in some sort of remission, you still need to suggest he read some of these discussions, and that you fear that you will have to go through so much more than "owies"

I know nothing about your life with him, but you need to educate him, MS is NOT just an OWIE every now and then....good luck...word owie upsets me. Hang in there and good luck...(( HUGS Malina)) Try not to get defensive, defensive leads to other emotions, not good for MS.

deleted_user 09/10/2012

OWIE upsets me too ! I guess I'm not going to be as gentle as these kind ladies have been about this.... Did he actually post this stuff on your wall? As if to belittle your MS and how this Person is so much worse off than you? Mental issues are tough but to do that to you on FB or in private via text or whatever is disrespectful to you period.
I could go on a FB rant for an hour about the junk people post and their personal business but that's not the issue. The issue is your BF disregarding your feelings, downplaying your MS, and publicly embarassing you... I hope this is something you are able to calmy discuss with him and he will quickly realize his mistake and make this right by you. I hope not to offend anyone by what I'm about to say but my girlfriend always reminds me "Men can be idiots and don't even realize what they're doing, it's our job to keep em straight and get em back straight" LOL... Get him straight girl... and try not to let it get you down. I'm sure he'll repent and make this right(:

deleted_user 09/10/2012

good advice, speak up, you will feel better (whether he will is yet to be seen.)
connie

deleted_user 09/10/2012

Most people are quickly bored by us and hearing about our symptoms, not that we necessarily care to even talk about them to anyone. I know I don't talk at all about them. I do this for several reasons.

#1: It distances me from the reality of this illness.

#2: It removes me from the chronic pain I live in temporarily and only to a point.

#3: It keeps me safe and I don't have to interact with people like your boyfriend.

He sounds like he needs to do a reality check fast.

This disease can turn on you in a moment's notice. One day you may seem to be doing fairly well and the next day you could be blind, paralyzed, etc.

Too bad that others in the world do not realize this!

I'd be angry as hell if it was me. What is this "having owwies here and there" supposed to mean anyway?

I'm sorry to have to say this, but your boyfriend sounds like he is clueless and gee, now I know why I don't have nor want a Facebook account!

deleted_user 09/10/2012

I completely understand why you would be offended and I would be too.

However, let me play devils advocate and say he MIGHT have been trying to be encouraging. My husband understands (for the most part anyway) how uncomfortable/painful/frustrating this disease can be for me. But he sometimes says things like above thinking that minimalizing it will put things in perspective for me and make me feel better. I usually tell him immediately that I find that insulting - it implies I make a bigger deal of it then it is which I am NOT. As soon as I explain this he is obviously crushed that he "said the wrong thing....again..." but I know he meant well and that counts for something.

I would be blunt and honest and explain why that would hurt your feelings.

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