Understanding Family...NOT

[rawksea76]

OK let me start by saying I have yet to dx'd. Actually going to neuro today for LP results. I look back now and have been having minor symptoms for years. I am now 37 a wife and a mother of two (10&12).

Long story short I have an Aunt with MS diagnosed 11 yrs ago. You would think there would be some understanding on the part of my "extended" family. However I don't have much of one. I have her, my grandfather and my wonderful Inlaws. My parents have long been gone. I try to talk tomy aunt who first said it all sounded like MS and
I am also on my second Neuro which she came to the first appt with me.

Now I am having major lft leg issues. As most of us can relate. I have tried to talk to her about it and she says she has never had walking/leg probs so she doesn't know why I would...Um we are all different.

My Gpa says it doesn't matter if I know what I have as long as the Drs do. Excuse me does he not realize the impact of all of this I guess not. He is my aunts father and has only her MS experience to go by and thinks she is "FINE" in fact the term SUPERWOMAN to go by. And that it is all in my "head"

I have read on here to just not try to make others understand and it can be more effort than it's worth. I guess I am just confused as to why the two closest family members I have and have experience with all this don't /can't understand....

Let me point out however that I do relish and appricieate My DH,Kids, my Inlaws, and even my Ex. They are here for me every step of the way even calling, daily to offer help, dinner, etc... They have said don't give them the I'm fine garbage if I'm not....

So do I still continue to PLAY the I am just fine with my Aunt and Gpa? Even though myself and my DH and Kids are not in so many diff. ways?

Sorry for so long but I just had to get it out even though I am sure I know the answer.

Thanks to all of you .......Amy


*** Moderator's note - post broken into paragraphs for easier reading. Many members have difficulty reading large blocks of text. ***

[QuickType]

I wouldn't play the "just fine" game with them, but I also wouldn't talk about the MS with them. If they ask how you are, smile and say "hangin' in there" or "sittin' up and taking criticism" or something like that.

I wouldn't engage in debates about MS with them. Sounds like they won't be convinced right now anyway. Give them time. Your aunt may not even be aware of the wide variety in MS symptoms and experiences, especially if she doesn't participate in a forum like this.

Your grandfather and aunt may not want to believe another family member has MS or they may think that you're looking for sympathy, who knows. You know it's not in your head, and so does your family, so just be patient and bite your tongue - or better yet, just don't talk about it with them. I know it sucks to hear "don't talk about this big major issue with certain family members," but the plain fact is that not everyone can cope with the situation.

[rawksea76]

Thanks

Thank you for the advice, That just confirmed what I thought and try to do most of the time. I just wanted to make sure I guess as it is hard to not be able to lean on or vent to those who you felt you were closrst to. But I agree You are fight inall you said. Thanks so much

[Krysalus]

Family can be the hardest

Hi

I understand completely. My mother refused to believe I had MS when I was diagnosed at 14. Years and years later, I get dx'd again as an adult and she still doesn't believe it. Who wants their kid to not be perfect? My family doesn't talk about it. As long as I appear to be fine, I must be fine. But I'm NOT fine. I spend my days exhausted. I can't do all the things I used to. I can't even do my own laundry most of the time. I pay someone to do it for me. I have my groceries delivered. I still work. I don't need to do anything physical besides sit at my desk but I'm not sure for how much longer.

I don't complain to them. One of the first things about stress management I learned is to avoid things that cause me stress. Hard to do with family, so when invites come I sometimes go and answer, 'I'm hanging in there" or 'same old, same old" to the question how are you? I don't tell them because often the query is really on them asking because 'they're supposed to'. If they wanted to know, they wouldn't give me a hard time when I say, "I'm exhausted, in pain and my hands don't work so well.' When I have to use my cane for balance is when they seem to acknowlege that I have MS but ignore it the rest of the time because it's largely 'invisible' for me. If I don't feel up to dealing with them mentally, I just don't go. I'm one of five kids and when my family gets together, it's us, our spouses, kids and respective grandkids. LOTS of people.

It sounds like these people expect your issues to be the same as what they are used to. You know they aren't. They don't. Educating them doesn't sound like something they want. Try to be patient. Sounds unfair. You have to be patient when you're the one who is not well. You have to make allowances for them but they don't have to do it for you. It is unfair but it's also what it is. You can't always change people's minds. I've yet to and I've tried so I just don't try anymore. My mom had a heart attack and when she was in the hospital she just did what the doc told her. She ended up with an allergic reaction to something she KNEW she was allergic to because 'you're supposed to do whatever the dr says'. I think it's the way she was brought up. Sounds like your grandpa believes that to. As long as the dr knows what's wrong, you don't have to worry about it. Just do what he says. Your sx and theirs are different so you can't possibly be as sick or they are fine so you must be!

Hang in there. Some people will 'get it' and understand. Others never will. Sounds like the rest of your family are wonderful. Limit contact with those that make you crazy when you know you won't be able to deal with them. See them when you know you can. <hugs> It won't fix the issue but it can make it easier to live with.

[rawksea76]

YOU are all wonderful THANKS

Hi Krysalus,
As you can see I am new to the message posting but I wanted to let you know you are right on the money...and I am so glad to have more insight from you and others giving it to me on how things may/may not go.

That is exactly how things are going on with my family. I have quite an interesting family background and Have only the two left in my Close family connections, (Not including my Husbands) The rest are all the ones you see at get togethers, Christmas etc.

So I am learning the "same old sameold" answer goes along way with both of them.. I don't ask for much I live right around the corner from my grandfather due to my grandmothers request a few years ago (she has since passed on) and I guess I am just scared and My aunt has been throught this for 11 years, she has knowledge and direction that may help.

I just would like to give my Husband and his mother a break sometimes from the "downs" they deserve it (He lost his father many years ago) And even My Ex Husband. He does little things too that help out big. And of course reading your reply makes me want to cry that things are the way they are.

But your are ALL so right they have their reasons for their behavior and That's okay.

I did go to the Neuro yesterday and he put me on IV steroids started last night, and if it helps, He will then give me the DX. I'm scared for all reasons you have stated and that you have already most assuredly gone through.

I know that is what this site is for and for the great goodness we all do for each other and the wisdom already learned by others who are willing to share.

Thanks so very much...Amy

[Krysalus]

hugs Amy

You gotta let me know how it goes with the dr.

Hang in there.. it's going to be okay. When I first got re dx'd I became fixated on the dx. Then I got to the point where I realized I was still the same person I was BEFORE the dx. I was tired before and I'm tired after the dx.

Hope all is well...