Just wondering

[Waydwnsouth1]

I thought occurred to me as I was reading some of the replies to the thread I started "What a hurtful thing to say". Some of the replies mentioned that my DW but in this case our DW/DH need their support system too. To be honest I hadn't thought of that before. But as I gave it some thought I recall some phone conversations my DW had and has with her close friends and sisters and they ask how I am doing. Her answer is always the same. "He's doing great." When in fact I may not be.
Now I know that is our typical answer for our own reasons but if she told them how I really was doing perhaps they may be supportive of her. They offer to lend a helping hand in any way they can. This may give her the support system she needs.
So I was wondering, how does your significant other reply when asked how you are doing? Are they up front as they can be without going into great detail? If so do they find that their friends and relatives are supportive and offer to lend a helping hand in any way they can?
I may way off on this and totally crazy but it was just thought. I was just thinking of a way to help her build her own support system. It doesn't bother me if she is up front with them. After all the truth is the truth. Just a thought.

[hotdiggitydog]

fine....

"He's doing fine" would be my normal response to the few co-workers, friends, or family members that actually ask. Is this true most of the time? No.

Most people don't want to hear the truth. I've read many posts on here of significant others just not getting it. That you can't possibly understand what the person with MS is going thru unless you have MS yourself. I don't believe this to be true. You can either open your eyes and see what this miserable disease is doing to the person you love or you can ignore it.

If I answered honestly to those around us about how he's really doing would it change anything? No...been there and done that. I would get a pat on the hand and be told to hang in there...things will get better. We all know that's a bunch of ***. Before you know it, the subject has been changed and the monster is swept under the rug to be forgotten about.

It's as if knowing the truth makes them so uncomfortable that they are uncertain what to say. What I would love to hear from our family/friends is "how can I help you" or "what can I do to make your life a little easier"?

Do significant others and caretakers need support too? Absolutely! Where do we find it? Heck if I know. I've lurked on this site for years and it's great for info and insight.

[Krysalus]

my SO varies

So - when people ask my SO how I'm doing, he answers depending on who the person asking is.

Some people just ask to be polite. She's fine is the answer.

Some want every gory detail like some kind of horror story serial. His answer to them is - She's fine.

Some genuinely care and would run to help if he said he or I needed it. - Typically, he'll give them an update and let them know if he or I need help.

It's important to me that when I'm having difficulty or not, that he doesn't forget to take care of himself. I don't mean just health wise. Time with friends, family, and doing things he enjoys is very important. Luckily, he recognizes that.

The other side is that some people just don't want to ask for help and think that they have to be strong for us! I think it's terrific that you realize she needs a support system. She may either not realize that or she might know that her friends and family have issues that would preclude them helping right now and she doesn't want to burden them.

I usually suggest my SO goes out with the guys occasionally. It lets him know that I'm okay and that I understand that I am not the center of the universe. <wink>

[AnneLouise]

my hubby says "She's doing all right," or "She's getting around."

I think people ask for different reasons. Most truly care, others are being polite. But, I feel this is our struggle. Our deal. We make adjustments. We are doing the best we can do. And I think we're doing pretty well. If one doesn't understand or "get it", so be it. That's their problem.

We know who to ask for help if we need it.

[hotdiggitydog]

"But, I feel this is our struggle. Our deal. We make adjustments. We are doing the best we can do. And I think we're doing pretty well. If one doesn't understand or "get it", so be it. That's their problem."

Anne Louise-

I too feel that this is our struggle together. Thank you for this perspective....I needed it!

[Jules A]

"He's doing fine" would be my normal response to the few co-workers, friends, or family members that actually ask. Is this true most of the time? No.

Most people don't want to hear the truth. I've read many posts on here of significant others just not getting it. That you can't possibly understand what the person with MS is going thru unless you have MS yourself. I don't believe this to be true. You can either open your eyes and see what this miserable disease is doing to the person you love or you can ignore it.

If I answered honestly to those around us about how he's really doing would it change anything? No...been there and done that. I would get a pat on the hand and be told to hang in there...things will get better. We all know that's a bunch of ***. Before you know it, the subject has been changed and the monster is swept under the rug to be forgotten about.

It's as if knowing the truth makes them so uncomfortable that they are uncertain what to say. What I would love to hear from our family/friends is "how can I help you" or "what can I do to make your life a little easier"?

Do significant others and caretakers need support too? Absolutely! Where do we find it? Heck if I know. I've lurked on this site for years and it's great for info and insight.

Yup, I agree 100%.

[laurasari]

I totally agree most people ask to be polite. Some even start offering cures they have heard about. Some people have even lost friends. I think because of fear of the unknown.
Good luck