Especially for men with MS--a question from a partner

[tyyt218]

Hi everyone,

This is my first post on this forum. I am a woman living with a man with MS. I truly love him and yet am at times scared about the future. We started dating (and almost immediately living together) 2.5 years ago. He told me about the suspicion of having MS immediately, when he realized I was falling in love. He told me in an email before letting me get too close to him. After an afternoon in shock I decided that no matter what, I really wanted to try this relationship. Who knows about the future? I could be hit by a car and live paralized myself. So I started living with him. At the time he wasn't 100% sure about the disease. Maybe he didn't want to find out exactly, and anyway he didn't have health insurance. After a few months we were together I had to choose where to live my future -- had a new job and 2 possible locations for it. Jobwise it was better to go to the worse (geographically speaking) location. Since we had started dating for such a short time, he told me to choose based on my desires only, and he would choose if coming along or not no matter what I chose. One of the many examples of how amazing he is. So I chose the job with the worse location and after a few months when the time was close to having to move, I asked him what he would do. He said he would come along! I was happy and scared at the same time, feeling like I would be somehow responsible for him to move from a very nice place to a worse place, just for me. Plus what if the MS actually was there and it got worse, and I couldn't deal with it? Anyway the feeling of happiness for the prospect of being together was really overwhelming, and we moved. In the new country he had medical insurance. A few months after we moved, he had the first episode since we got together. I pushed him to try to get diagnosed. After a long troublesome period he got it. MS, confirmed by 3 different doctors. The last doctor was so kind. We went together and we both cried.

Since then, ups and downs. Mostly ups so far. One more scary episode only. He never tells me when the episodes come up, and I seem not to be able to get the hints. He tells me after a few days. I can see when he's in pain but most of the times he can keep his amazing sense of humor and he's just as kind and compassionate and a wonderful companion as always. Our relationship in these 2.5 years seems to have only improved to the point that I was considering marriage (I'm in my early thirties and he's just past 35). Still I don't even know if he would feel like it, since he doesn't ask, and there are a few things that scare me.

It's really hard for me to completely grasp what he feels overall. I can guess many things. If I'm scared, he must be even more, or so I think. Being a guy he has a very hard time talking about feelings. If I touch some subjects he completely closes himself up--sex being one of the hardest subjects to touch. He has lost almost all his drive and we had sex about two times in the past year. It was pretty hard for me at teh beginning but I got used to it somehow. We hug a lot and he's very affectionate, just completely not sexually. When we had sex last it was completely surprising and we both were really really happy. I can barely imagine how down he must feel when he thinks about this so I have a really hard time bring up the subject. But overall I would really like to discuss it.
Related to sex, there's the subject of children. We both would like to have them, for example. Will this be the source of lots of stress?

And then my fears for the future, which I know, I should just get over considering, as I said earlier, that no one knows how the future is. But here they are.. since I'm writing the post also to clarify myself to myself. How will we cope with increasing disability? So far he's pretty much as fit as he's always been (i.e. very fit), and athletic. There are some things though that he can do only with pain, like long walks, or cooking for a long time--both activities that he enjoys a lot. What will happen if the pain gets so bad that he can't walk any more, or cook any more? How will he feel, and how will I feel for him? How will I feel if I had to take over completely? So far I'm the one who works most.I really enjoy my job and I find great satisfaction in it. Would I be able to give it up, or give up a lot of it? How would he feel if he saw me doing that? He has said at times that he doesn't want to be a burden, and whenever he said so, I always tried to make him understand that he isn't. I would not want him to feel a burden. He also says, half jokingly, that he's a failure. I really don't like when he says this and most of the time we end up kind of laughing. But still I guess part of him does feel that way.

When I read some of these threads, I'm at the same time scared and hopeful, to see how different people can cope in different and at times amazing ways with such a difficult situation. I would really love if anybody had anything to answer to this rambling post. I'd particularly like to hear from guys living with MS. What would you like for your girlfriend/spouse to do, or say, to help you face subjects like feelings and sexuality? Did you ever feel like a failure, what could your partner do to help you feel that's not true? Did you consider talking to a psicologist? Would you recommend it?

Well any comment really would be appreciated. Thanks in advance.

[tyyt218]

Hi Julie,

Thanks again for your reply. What you said about drugs is very interesting. So no one ever told you (or I guess anyone who's reading this post) that the balance between likelihood of decreasing relapses and side effects is something to consider? I was there when the last doctor told him so and literally told him that therefore it was totally up to him to decide when to start the medications. Your point is very strong though (relapses could potentially completely disable a part of your body) so I don't understand why the doctors didn't bring this up very strongly to my partner.

I totally agree that talking is key. It's hard for me as well but I'll keep all you said in my mind and spirit. Hopefully it will bring some fruit.

Thanks.

[Lulu54]

There are a number of resources on line for the topic of MS and sexuality/sex.  There are also a large number of video presentations on the topic, done by MS nurses and doctors.

I have viewed many but right now I'm having trouble finding them on line.  I will try again later today but perhaps someone else here has them book marked?

Thanks everyone for having this honest and compassionate discussion.

Lulu

[Sumanadevii]

I would never recommend asking my spouse to get into counseling with me.  I think he will feel trapped and begin to blame himself for the problems.  I highly recommend you getting into counseling and finding ways to cope with your situation.  There seems to be a deep love between the two of you.  Sex is not the entire picture.  The counselor may recomend ways to approach him without causing him to panic.

In the meantime, I would recommend toys for you.  There are many on the market.  In fact, he may find that fun and participate.  If not, I am sure if you were honest and told him about using them, he may find relief that it is not being put on him and that it brings you satisfaction.  

I doubt sincerely he isn't aware that he isn't "giving" in that area.  He is probably all too well aware and feels badly.  If I told on this board how my husband and I decided to work the sex issue out, there would be gasps from the audience.  After 40 years honesty comes all to easy for us...lol

[jujuminx]

It is very common for people with MS to be deficient in vitamin D. They don't know why or if it's a contributing factor in it's development. My neuro tested my vit D the day he dx me to see if I was deficient and I was.  He put me on high doses of D until it was normal then it was reduced.

As far as there being no real good drugs for MS, that's just false.  While there is no cure, there are drugs that slow the progression in a certain percentage of patients. Taking a drug that lengthens the time between relapses and may make them milder, is one I will take anyday in my fight against this disease.  I am going to fight this battle and use every weapon I have to keep my physical abilities for as long as I can. One relapse can PERMANENTLY take away any one of a number of my physical abilities, which I am very partial to. And as far as side effects from the drug, a mild skin reaction every few weeks is nothing.  Really, I would strongly encourage him to revisit his decision not to take any drugs if his decision was based on what you outlined.

As far as letting people know, I let a handful of friends know at first, then my extended family a few weeks after. It was like a weight was lifted off my shoulders. Keeping secrets takes a lot of energy.  It was strange as first b/c it really makes you face reality. There is no avoiding it when you are constantly talking about it and explaining to family what exactly it is and what it means. But then once the people you want to know, know, you stop talking about it so much and life starts to go back to a new kind of normal.

After a while it becomes a non issue.  People forget!  Sometimes I have to remind them that I need to take it easy (mostly preventative) or cannot commit to a extended summer activity. It has actually become sort of a joke among some of my closest friends (in a good way) when I decline due to my MS, they say, "Oh, not that excuse again, you gotta get a new one!"

I guess my point here is talking is good, even if you are the only one doing it.  MS  and it's effects cannot be a taboo subject between you if you want this relationship to move forward.  You need to talk about it even if he doesn't. Hopefully, based on your lead and him being more comfortable listening to you, he will begin to open up.  There is no forcing.  Men cannot be forced to talk that is for darn sure.

If you two end up together long term, life is going to throw a lot of things at you. MS may end up being small potatoes in the end. And ultimately, no body is going to get through this life without facing challenges, experiencing loss and feeling physical pain (chronic or otherwise).

I found that for me anyway, saying out loud to my husband what I thought his worst fear was (and it has nothing to do with MS) and reassuring him that it will never happen b/c his worst fear is within my control, helped him let go of it.  We all have things between us and our spouses that we just never talk about, maybe it's not even there on the surface but deep down we know. Say it, reassure him and perhaps it will be a new beginning for him and for you.

Julie

[tyyt218]

Hi Julie,

Thanks a lot for your reply! It's really great to hear that you have a wonderufl husband, a rock solid marriage, two healthy kids and lived a normal life.

It's true, one of the things about MS is that it's very hard to predict its course. I'm guessing a weird part of me is thinking that forcing my boyfriend to talk about it will make him feel worse. Anyway, this is just a side note...

Well I replied to the others as for the sex part, but I forgot to reply to the questions about MS.

Actually I'm not sure the doctors have determined one type or another. He went to several doctors who gave him very different advices. Two of them said that basically there are no really good drugs for MS and that most of them just decrease the chance of having relapses but this chance decrease is not really that sure and the side effects can be pretty bad, so they recommended to him not to start on them unless he really felt a need. The third who was a specialist from a University-related clinic told him that he would be a fantastic case study since he hasn't ever taken drugs so he could experiment the new treatments. Not wanting to be a guinea-pig, my boyfriend declined, since for now he is still okay most of the time. So actually right now he's not taking any drugs at all. He just read that some studies found that high doses of Vitamin D can help and so he decided to try this. He says it seems to help him feel less 'jittery'.

He hasn't disclosed his condition to many people including pretty much all of his immediate and extended family. I respect his decision, I can see pros and cons of letting people know. Did you let others know very soon after your dx?

Anyway yes, we're a bit isolated in this. I'm guessing that's why I'm looking for help on this forum... And that's why as everyone suggested some professional help could be good for both.

Thanks again and blessings to you as well.

[tyyt218]

Hi Addi,

Thanks a lot for replying! I do really like this forum.

My boyfriend was exactly thinking what you are saying before I fell upon him. His ex had broken up with him a year before, possibly partly because of the first symptoms showing up. He was alone for a year, not wanting to be a burden for anyone. I guess I was convincing enough for him to let me try to be with him. I suppose it's a bet for both of us. Will be able to keep becoming a stronger couple? Overall it's something every couple has to work on.

I was just considering today, this is just a different life journey than what I had planned on when I was 14 or so. But I had other occasions to see that life is so totally unpredictable anyway. This is an exciting journey that challenges me to improve myself in ways I hadn't considered before. One thing he told me some time ago was that I always want to solve problems. When one has a chronic disease he/she knows that for some things there are no solutions. One just needs to learn to live with unsolved problems, things not necessarily improving. A hard lesson but a good one, if paired with a healthy desire of trying to solve what we can indeed solve. I feel like I have many more things to learn from this journey with him. This is why I really would not want him to feel like a burden. But again, another thing to learn is listen to what the other person tells me he feels...

As for the sex part... It must be very hard to see your body change so much. The lack of sex drive was one of the things he told me at the very beginning to make me understand the issues. I'm guessing part of me didn't completely want to believe that and thought it was also related to poor sexual partners earlier (you see, my foolish ego!). What can I say? It is a problem, as discussed earlier. And I would not have thought I could have stayed without sex for so long without feeling really miserable. But hey, it so happened that even though I would obviously really like to have sex, my body has kindly adapted to its lack for now. So I do want to try to find some better solutions, as Bob was suggesting, but I also feel like it is not worth losing the person I love because of this. Maybe it's a woman's thing.. maybe it would be harder to find a male partner with this mind attitude.

Anyway again thanks a lot for your answer, and best wishes for everything.