[cdwyer49]

I've noticed that since I was diagnosed 6 months ago that my husband has become increasingly distant.

When I was first diagnosed, my husband kept saying things like, "There's nothing wrong with you" and "It's all in your head". I finally sat him down and told him that I needed him to quit dismissing how I was feeling and how much I needed his support. He apologized and explained that he couldn't wrap his head around what was going on and that what he was saying and how he was acting was a defensive move because be truly wanted me to be okay. He became very supportive, went to my appointments and became enthralled in reading any available information about MS.

Over the course of the subsequent few months, I could see and feel that he was pulling away from me. He stopped having meaningful conversations with me, avoided spending time with me and ceased being intimate with me. I've tried to talk to him a few times, but in his usual form, he prefers to remain silent or avoid any conversation I tried to have in regard to these issues.

Becoming increasing upset with his avoidance, little conversations about other things in our lives would turn into full blown arguments. And of course, my inability to remember certain things or previous conversations would just add fuel to the fire. During these arguments or during the apologies stage, he would always mention my MS.

Tonight we had an argument about a credit card and I couldn't recall a conversation we'd previously had about it and then the frustration of our other personal issues about his non attentiveness blew it up.

We later sat and talked. I told him that his unwillingness to discuss our personal issues was flowing over into other issues and making them worse - he agreed. I then asked him about bringing up my MS every time we argued. I also asked him if MS was the reason he was distancing himself from me...I had to ask that question 6 times before he "sort of" answered.

He told me that he has not come to terms that I have this "devastating" disease. I've actually seen three neurologists hoping one would say that this wasn't MS. Unfortunately they all agree.

I have to go for another MRI on Friday for my thoracic and cervical spine due to many of the additional symptoms I have experienced since the original diagnosis. My husband went into a tirade about why do I have to keep having all of these tests when there's no cure and nothing they can do to fix me. And how I have to take Copaxone to slow it down, but how nothing would stop it. How my doctor suggested that I discontinue working. What's in store for our future. How when all of our children eventually leave our home, how we can't do all of the things we've planned because I may be in a wheelchair.

I didn't know how to answer. I've never seen him like this. I've never heard such negativity come from his mouth. I'm not letting this consume me, but obviously he is. He suggested that we don't talk about my MS at all because it upsets him.

I have 6 children and a demanding job that requires me to work about 60 hours per week. Because my time is so consumed by family and work, I do not have a lot of friends. He is my best friend. Now I feel like I have no where to turn for support. I'm frustrated, feeling defeated, alone and confused.

Has anyone else experienced this with their spouse?

[NurseNancy]

dear 49,
welcome to NT. i'm so glad you found us.

i'm not married but it may be that your dh is scared for both your futures.
men sort of feel they need to solve problems and i bet he feels like he can't do that. so he has no control. that's a scary feeling.

i found that truly dealing with 1 day at a time works for me. 1 test at a time etc. no one can predict the future, even healthy people. having MS isn't a death sentence. most people with MS lead independent, active lives.

i had to make some adjustments in my daily living, like using a cane. but i'm independent and drive and go places and have friends. i have to pace my energy and can't do all i'd done before but that's the adjustments i talked about.

i was on copaxone for 10 yrs and did very well.
i would encourage your dh not to project too far into the future. with 6 kids he may be fearing he's going to lose you.

would he consider any short term counseling?
please stick with us as i'm sure others with more insight will respond.

[Lynn]

Hi there

I am so sorry that you are going through this with your husband. I agree with what Judy has said. I think men, by nature want to fix things - and this isn't fixable. Added to that, he can't control this, and the worst thing about MS is that it IS so unpredictable.

Do you know other people with MS? If not, it would probably be good for both of you to go to a support group or something similar. Sure, there would be some people there that are badly affected, but if it is anything like the group that I have been a part of, it can be quite uplifting - and would be good to see those who have been dealing with this for a long time and are still ok. One of my dear friends is well into her 80's and she is still walking (with a stick, admittedly, but so are many of her non-MS peers).

When I was first diagnosed, my picture looked pretty bleak - even according to my Neuro. My husband was really caring, but he didn't want me to tell anyone about my Dx. 'None of their business' he said. He didn't want to read about what my future might hold - or about symptoms and stuff either. That was hard to deal with and it took me a fair while to come out and say 'would you rather your friends think I am a drunk because I stumble around, slur my words and just might pee myself - or know I have this condition?' and I followed this with 'this is my disease to share with whomever I choose'.

Looking back, it was denial, and maybe that is what your husband is feeling. His comfy world is suddenly spinning out of control, and the future he thought was a given is now uncertain.

BUT it might not be like that. I am now twelve years past Dx. I am walking, seeing, speaking, and working better than I have for many years. The stress this is putting you under can't be doing you any good.

You know what else? One day, MS MAY mean you have to use a wheelchair - but any day, you or your husband could have an accident and be left having to use a wheelchair. As lousy as this disease can get (and I am truly fortunate in my process - so I am not discounting how awful it is for others) - there are much worse things that can happen. It just takes a long period of acceptance and adjustment to come to terms with it.

I don't want you or your husband to look at this through rose-coloured glasses - it isn't easy, it is a nasty XXXX of a thing.

I just hope that you both come through this like we did, stronger than ever.

Hugs

[Kitty]

Originally Posted by cdwyer49

My husband went into a tirade about why do I have to keep having all of these tests when there's no cure and nothing they can do to fix me. And how I have to take Copaxone to slow it down, but how nothing would stop it. How my doctor suggested that I discontinue working. What's in store for our future. How when all of our children eventually leave our home, how we can't do all of the things we've planned because I may be in a wheelchair.

My DH passed away 4 years before I was diagnosed so I have no idea how he would have reacted. I like to think he would have been supportive but men deal with things differently than women do.

Life is what happens while we're making plans. I love that quote because it doesn't matter who you are or what you do......life continues to happen to us all.

It sounds like he'd benefit from some counseling. Maybe that would be something you two could do together.

I understand that he doesn't want to face the fact that you have MS but that's not conducive to helping you deal with it, either. I hope he comes around and is more understanding and supportive.

[Erika]

I’m sorry that your husband seems to be growing distant and is not wanting to discuss the situation in a meaningful way.
My late husband was very supportive, but he knew of my MS before we got married. Early on in our relationship though he would get frustrated when things didn’t get done and I appeared to be OK at the time. It took a while for him to understand that the symptoms of MS are not always visible and that some of the invisible ones can be the most disabling.
The profound fatigue, localized pain and leg spasticity that I experienced during some MS bouts were things that he had trouble accepting; because he couldn’t see them.

What brought him around was taking seriously his complaints and also taking extra care of him when he experienced “invisible symptoms” for himself. He came to understand that, although his were from different causes, his experiences of suffering when he appeared to be OK, but was not feeling well, were very much like what I experienced when MS reared its ugly head.

I remember a particular time that he developed a terrible headache following extensive dental work. It went on for days and he was incapacitated by it, despite taking medication. He was really suffering because otherwise he was a strong, healthy and robust farmer-type of guy. He just wasn’t used to being “down for the count” as he said.

During that time I made him his favorite creamed soup because he was having difficulty eating and I brought it to him in the living room because even moving from there to the kitchen made his head throb. I also frequently massaged his neck because it was in spasm and took over some of his farm chores.

Even though it was difficult for me because I was going through a mild bout of MS at the same time, he was definitely worse off. He really appreciated the extra care and said so. It was at that point that I told him that although he looked just fine, that I understood that appearances were not always a reliable indicator of how one was feeling, and that I had no doubt that he was suffering by the way his normal habits and behaviors had changed.

It was during/after that episode that he seemed to really understand that when something was going on symptom wise with me, even if he couldn’t see a physical sign of it, that its impact was demonstrated in other ways. When my normal habits and behaviors changed or things didn’t get done, he’d ask if I was OK, or if something was going on.
It was then that I began to tell him how I needed him to help me, rather than go into the symptom list itself.

He told me that when I said I “needed” him to do something that it made him feel good because although he knew that he couldn’t make the symptoms go away, it enabled him to reduce my stress and suffering just the same. He also told me that it affirmed that I needed him…as if that were ever in doubt .

It was odd for me to realize that early in our relationship when I wasn’t feeling up to snuff, that my own drawing away in an attempt not to impact his life also, was in fact excluding him and making him feel inadequate in a way.
So through a process of trial and error, it turned out that rather than putting the emphasis on what may have been going on symptom wise with me, what worked for us was to simply tell him that I needed him to help me with what ever it was that I could not do at the time.

This was not the same as asking him to do something, as in “Would you please make your own lunch and dinner today?” That would have only been a request, not a need. When I wasn’t well, what I expressed to him was an actual need and not a request. There is a huge difference.

Thus when I was suffering with symptoms, it meant that I could not do some things and it could come out like “I need you to look after your own lunch and dinner today.” Or if symptoms were more impactful, it could be more involved like “I need you to take over feeding the horses for a while.”

He came to realize that depending upon what sort of need was expressed, it at least hinted at how severely I was being impacted by symptoms at that time. He didn’t always ask what was going on, but from my side, it didn’t seem to be important that he know; so long as he knew that I needed his help to get through it. When he asked, I told him not just of the symptoms but I stressed what it meant in relation to what I would have difficulty doing on my own. He could understand that way more easily and he spontaneously began to take over some tasks until I began to take them back over as symptoms subsided. It meant more than I can say and our love for each other grew as we became more of a team...a true partnership .

You might try something similar with your hubby. He might be feeling helpless because he can’t make your symptoms go away, so he may be trying to make them go away in his own mind by minimizing them. It is unlikely that he knows how hurtful this is to you, so maybe you can forgive his clumsiness in his trying to cope with your current symptoms and an uncertain future.

Maybe try giving him something that he can do that allows him to help you. That may help him to feel needed and appreciated when you are struggling with symptoms instead of making him feel helpless and excluded.
Doing that may help to take the emphasis off of coping with and accepting the impactful situation of your symptoms and may help to put it toward building a stronger and more supportive relationship.

This may also work with your children, as they too will have to come to grips with times that you may not be able to participate in, or do some things that they would like you to.

With love, Erika

[Lynn]

Erika I think you are right - my man (an ex-policeman of 23 years) went through a huge bout of PTSD and major depression that caused him to leave the force. It was a very dark time for him. That gave me the opportunity to be the 'caregiver' rather than the 'cared-for' while he healed and reinvented himself and made a new career.

That's a pretty drastic example, but I think it is way too easy to get caught up in stuff and making our loved ones feel needed, important, special and attractive, and letting them know that we are there for them too, is a vitally important part of it all.

Pretty hard when it is all new though. Especially when there is so much stuff happening to us, but maybe a romantic dinner, or if you can manage it, some time to yourselves is a good idea?

[Debbie D]

Sorry you and DH are having this experience-it is understandable, as some have suggested, that he is feeling helpless...my DH is a problem-solver, and he knows he can help "fix" things for me by helping me.

Denial of your condition is his fear of your future together coming out...he is voicing his fears of you ending up in a wc, which is at least honest of him.
Once my DH & I went to a workshop for partners in dealing with MS. The leader suggested that as much as we patients want the MS experience to be over at times, our partners might feel the same way. My DH said, "I do..." that was the first time he ever expressed how it was impacting HIM. Most of the time he's the cheerleader for me. It gave me a perspective on how MS affected his life.

On the NMSS web site, there is a section for partners/caregivers. Perhaps it will give your DH a place to gain insight on how other partners deal with MS in their loved ones' lives.

He probably feels as alone with his feelings as you do...he might feel things like "I didn't do anything to get this in my life"...and probably feels guilty having negative thoughts about the impact it is having on him.

It might help you to find a support group for couples dealing with chronic illness as suggested...and none of us knows the projection of our disease in the future...we only have this moment. I was watching a show with Gary Zukav, who wrote an insightful book called The Seat of the Soul. Anyway, an audience member was discussing how she and her husband were contemplating separation, and she kept saying, "but..."
gary gently interrupted her and said, "Instead of following "but" with a complaint or a fear, ask yourself, "but...now what?"

You and your husband need to ask one another honestly, "now what?" MS is in your lives. There's no getting away from it. It helps if he can get some kind of support for caregivers or partners, or maybe couples counseling. It will also help him to grieve for what has been lost-his vision of life as he'd planned. You will benefit from acknowledging to him that you grieve that also, but we are NEVER guaranteed what we dream...
as they say, life gives you lemons. Sometimes LOTS of them...you either can cry about all of the lemons that were dumped on your driveway, or get busy, take the sugar in your life and make lemonade.

Try to point out what you CAN do, even with MS. It helps us as patients to keep that in our minds, because we can get very depressed and overwhelmed by what we can't do. If you end up in a wc, it doesn't mean you can't go places and do things-on the contrary, it can make dealing with MS easier if it is needed.

Keep us up to date on how you're doing...

Thank you for sharing your predicament-it helps all of us look at our way of dealing with MS, and getting out that container of sugar to make more lemonade...

[SallyC]

How awful this must be for you. My DH went through a similar
problem, in the early days. It was a form of denial. My Mom,
although supportive, believed that I was faking some of it.
So my support system was looking a bit grim as well.

DH, at that time, didn't think I could feel anything while making
love. Men can't help but think with their lower brain, at times.
After proving him wrong, he became so much more supportive.
Because, he then knew he was still in control, so to speak.

This was just my story and is, in no way, a solution to your's and
DH's problem.

Here's hoping that you and DH may, if not talk it out, work it out.
Take care of each other..

[cdwyer49]

Thank you to everyone. It is definitely nice to hear all of the prospectives. I think I can now better relate to why he is acting the way he is acting. He is definitely a "fixer". He is always wanting to help everyone in our family. There's an MS seminar hosted by Copaxone coming up. I'm not sure whether I should ask him or just go myself. It's hard going through this "alone" and feeling as though I've ***** up his future plans. I am afraid of losing him completely. I'm such a positive person and I'm not accustomed to such negativity.

[Debbie D]

Symposiums like that can give you both information, but I must warn you, he will see patients with walkers and in WCs, which might freak him out.
But there's always great info at these types of things...and nice munchies!!