Be hopeful or factual?

[DavidaHusband]

Short story: When my wife and I talk, should I be hopeful or factual/honest or even brutally honest? Maybe it's better to to not lead the conversation but take cues from her?

We talk about this daily. I try to be upbeat as I can but think some of my worry is leaking through and she is picking up on it. As an example she asked "So are you just researching MS only?"

We are not officially dx'd, the soonest that will happen is Monday. I spend hours a day researching MS, and the more I study the more I think there's a good chance that's what my wife has. She has similarly done much online research and reached that conclusion sooner than I did.

So for those that have gone before, did you wish you'd discussed MS directly as you awaited diagnosis, or wonder cures, or talk about anything else?

[skyeblue]

My husband has progressive ms and yes, I wish we'd discussed this thoroughly at the time of dx. Neither one of us knew much about this crummy disease and neither one ever believed the level of disability my husband would later reach (after 17 years).

We were therfore very unprepared to cope and have been shoved into adaptation after adaptation.

I do wish the doctors and neuros would have been more forthcoming in telling us about the worst case scenario -- instead they danced around it and we never really were told to prepare for the eventual wheelchair and other losses.

It made it really tough on our marriage as we found we could notr communicate about these issues. I wanted to talk and my husband wanted it to all just "go away."

Best of luck to you and your wife. MS is a hard road to hoe.

[struck-a-nerve]

Being newly dx I can tell you that the more my dh and I know and talk the better. We have been researching and talking so much. Knowledge is power and what you don't know may hurt you in the long run. Hopefully ms will solidify your marriage not damage it and communication will help make that a reality.

I had a neuro I really liked that was not forthcoming enough so I switched that was very helpful. I also took an ms 101 class offered by one of the hospitals with my husband and that was extremely helpful.

I wish you both the best in your new journey.

[DavidaHusband]

Skyeblue: I am trying to do the "hope for the best and prepare for the worst" mindset. I wonder if it is harder for a couple to have the male with MS vs. the female?

Skyeblue and Struck-A-Nerve: Interesting that you didn't feel the doctors were forthcoming. I have wondered about that for our case.

Usually when I go to the doctor for myself or with a family member it's "here is what is wrong." This is new territory for us getting vague answers and generic reassurances. I have wondered if it is a case of not enough data, or not wanting to deliver bad news until sure of the dx, or maybe I'm too sensitized to every little thing now, or maybe something else.

Walking in the dr's shoes for a moment, though, I can imagine delivering bad news has to be tough and could appreciate wanting to be really really sure.

Struck-a-nerve: That's an ironic but clever alias. Speaking personally, I feel better learning more, too. I'm not so sure about my wife, it looks like she has tapered off on researching and is encouraging me to quit researching. I'm not sure if that's research fatigue, or just ready to move on (she has felt much better the last 2 days and has been whirlwind of energy getting things done, that's so good to see after the last 3 weeks). One silver lining is I think the fear of MS has actually helped our marriage. Thanks for your good wishes, and I'm impressed by your reaching out with your note especially given how recent your dx.

Being newly dx I can tell you that the more my dh and I know and talk the better. We have been researching and talking so much. Knowledge is power and what you don't know may hurt you in the long run. Hopefully ms will solidify your marriage not damage it and communication will help make that a reality.

I had a neuro I really liked that was not forthcoming enough so I switched that was very helpful. I also took an ms 101 class offered by one of the hospitals with my husband and that was extremely helpful.

I wish you both the best in your new journey.

[Jules A]

Hi and welcome, although I hope your wife doesn't have MS if she does I would wait for her cues as to how much or how little she wants to discuss it. I think it depends on her style as to whether to be brutally honest with the information you have found. I would bet most of us already know the "truths" with regard to current MS information but that doesn't mean everyone can handle it or wants to deal with it right now.

She will probably wax and wane with the need for information and while I would still encourage you to do your own research as you feel necessary I'd let her guide the conversations with regard to how often and how much it revolves around MS.

DH and I almost never talk about it and I like it that way but its an individualized thing I guess. Hang in there.

[Bob698]

OK, first off. Wait and see what happens. It reads almost like you have the panic pump running in high speed.
While its understandable it's not good for either of you.

Not trying to be a wise guy, but "we" don't have MS. Your wife may be diagnosed with it but neither of you know yet. If she is, both of you will take the ride but its her trip.
MS, if that's what she has, can be a very tricky disease. What seems like an avalanch can slow or even stop for long periods of time. You really can't predict things like progression or relapse rate or symtom onset. It just doesn't work like that.

One thing you can do is make it worse. If she's got MS, its very important that she learns to control stress. That means staying calm and learning to seperate the things she can control from the things she can't.
Shoving possibilities and symtoms at her isn't going to help right now. I'm not saying to live in denial, just don't jump the gun.

Think about it, if you're reacting and planning worst case situations- how is your wife going to react?

One of the more tricky things about MS and neurological diseases is that we can "blank" out some mild symtoms. Or, we can think ourselves into worse symtoms that were never there in the first place.
"I was reading about floaters and foot drop. Oops, there they are..".

Again, MS doesn't work like that. What comes up is what comes up and we don't have a lot of control over it.

[kif8skip]

My BF has MS rx'd last August.

So far we have found the best way to deal with it (ms) is to deal with what we need to at the present time and then put it aside. MS was taking too much of a front and center place in our lives.

While we can do this we will.

I attended a MS Caregiver support group one time ,but will not attend again if and when there is severe progression of the disease . I found it was for those taking care of extreme bedridden partners and we are not there.

We have together signed up for a group for newly rx'd - it starts in couple of weeks.

I pray your wife doesn't have MS - it is hard for the person with MS as it is THEIR own bodies being the traitor , and on us partners it is hard too-

I do not WANT to be called a caretaker....I want to be called a partner.!