Trying to get my husband to "get it"

[lisa1014]

How do you get your loved ones to understand that MS is not a death sentence?

I was diagnosed in Sept. of 2011 and I think my husband may be in denial. He thinks I should be able to everything I did before I had MS. He doesn't get that getting my 3 kids (ages 10,7, and 2) is a chore and sometimes that is all my body will handle.

He worries so much about the future and what will happen if I can't work anymore because I carry the insurance.

I am so stress with his negative comments about my just being lazy. When I try and talk to him about it he just shuts down. I was seeing a counselor and that help me but he refuses to go.

Anyway thanks for letting me vent.

[BigA]

No problem. You have to give him time. You have no choice but to accept your disease and are spending a lot more time doing just that. It takes others longer. It really is hard on some people, even though we're the ones withthe disease, it still takes a toll on our families.

If he still can't get it, just get over it and take your rests without feeling guilty or worrying about what he thinks. You may not be able to make him understand.

[LisaL77]

Wow, just lazy, huh? My husband has made similar comments, and I just snapped at him. Fortunately, his sister-in-law (who has MS) explained to him that not everyone will have a mild case of MS like his buddy's wife who (and I quote) "does tri-athalons and she's doing great!" Yeah, good for her.

When I was diagnosed, he said I was negative when I was explaining to him the risks and side effects of the meds I could choose from (I'm on Copaxone). I told him being factual is not being negative and he really needed to be more supportive.

Your husband really needs to come along to the neuro appointments and perhaps a group meeting would do him good. Education is the key and if he is present he can't help but hear what people are saying.

Sorry you are not getting the support you need. Perhaps a direct conversation would be good.

[Jules A]

Vent away!

I'd continue going to therapy even if he won't attend because it can still help you.

I'm a hope for the best but plan for the worst kind of person also so maybe his concern can be channeled into something positive like him starting to consider a change that will offer him health insurance should it be needed in the future. That might help him feel more in control.

I made a major career change after my diagnosis and it has really improved my sense of security which I feel is priceless in this uncertain world of MS.

Good luck!

[lisa1014]

THANKS EVERYONE,

He does go with me to most of my appointments unless he has to get the kids or can't get away from work. His mom is very supportive of me and I am sure she would have his behind if she knew he was acting this way.

My husband compairs me to another person we know who has MS as well. I told him that she doesn't have children so she doesn't have an apple to apple compairison with her. He hasn't said that to me since.

I really do think he is trying and he is picking up a lot of the slack in the house cleaning dept. He is just one of those people that lets things bottle up instead of talking about them.

Also he does not want any of our friends to know yet. He says he can handle it and doesn't need them feeling sorry for us. I keep telling him they are gonna find out sooner or later and he may feel better if he talks about it. I just hope someday he will listen to me.

[Tawanda]

Dear Lisa,
I see you are new here. You would not believe how many posts exactly like yours have landed on here. I've posted several similar threads. In the final analysis, the only person you have control over is yourself.

I wouldn't "get" this disease if I didn't have it myself. If I was basically the sole supporter of my family, as is my husband, I might not by hearts and flowers either.

I stopped trying to explain my M.S. It was like trying to explain what air looks like. I stopped resenting my husband and the quips have pretty much ended. I wish we were the last of the red hot lovers, but honestly, the M.S. has been a huge test of our marriage.

Good luck. MSW is a great tool to vent. We "get" you!"

[Imagine]

Lisa, 1st, I'm so sorry that you've been diag w/this scary and unpredictable illness. I know that you feel like you've had the proverbial rug pulled out from under you. 2nd, it breaks my heart that your husband is not doing what you believed he would do, should something like this occur, when the 2 of you married.

I am likely to catch a lot of flack for what I am about to say- but that's okay, I LOVE ALL OF YOU NO MATTER HOW ANGRY YOU GET W/ME.

Deep Breath: My reaction when I read your post went a little something like this, "oh no he didnnn!"

[Imagine]

OH COME ON!

Seriously, I was in the middle of my post- I believe the last word was, "didnnn" & I swear, CLICK, "thank you for your post." WHAT??? I cannot leave it like that! I was going to explain. So NOW I have to hurry and post this and THEN continue with the first. OYVAY! Talk about stress.

Okay guys, to be continued...

[Imagine]

So, I am going to finish my thoughts

uh, it was important so I'll remember. I suppose I'll have to mute PBS. Now, you don't know me; but if you did, you would know you're important when I mute a documentary on poverty (that part is serious).

Oh Yeah- I remember! Look, my favorite quote in the world is Ghandi, "we must be the change we want to see in the world." I even wear it on a chain beside my Star of David, which I never take off (except for those MRIs). I'm a pascifist. I've been a strict vegetarian for 25 of my 40 years.

The reason I say all of this is b/c I want you to know the significance of how I felt when I read your post---RAGE. I'd like to explain some of what's behind the anger. Yes, I feel compassion for your spouse... the compassion I feel for you supercedes what I feel for him... the compassion that I feel for those innocent children supercedes everything.

The reason I was sooo damn angry with your spouse: I am a mom too. I have ONE child (legally); but many who are "mine" b/c I'm the only mom they've had. They were foster children and 1 I adopted when she was 18. When I saw your childrens' AGES(!) 10,7, and TWO!!! Oh, honey, God bless you. My baby was 10 when I was diag, and b/c she is "the only," we're unusually close and she had to be redirected as to who mom was.

The very thought of my child being TWO when I was diag causes me to shudder. U didn't mention the gender of your children, but I would like to know, as that usually makes a difference. My profession, by the way-a Child and Family Therapist. I'd be very interested in knowing what your therapist said about your spouse not attending sessions. Are your 7 and 10yo receiving services?

The way I always worked: children had a safe place to talk about their fears/feelings; each adult had an individual therapist for the same reason; couple worked on their issues w/1 of the therapists; entire family met with child's therapist when deemed appropriate.

There are support groups for caregivers your spouse can attend which wil provide an outlet and education. There are a bizillion books, websites, free magazines, and the list goes on. Obviously, there is a computer in your home, p-lease! Yep, he's stressed. YOU, are the one with ms.

I can only speak for myself (okay, I've heard the same from 2 others), the 1st 2 years were horrific- in terms of sxs; in terms of life changes; in terms of grief... but you know what? Hand to God, I am sooo much better now. I have my days. I think the difference is that now I no longer am afraid b/c I understand what's happening to me.

Please- Please-Please! DO NOT VIEW YOURSELF AS FLAWED OR AS LESS THAN. As long as you don't view yourself in that light, I promise you, noone else will either.

Not tell anyone??? Newsflash: it's happening to you. Yes, it effects him. IT IS NOT HAPPENING TO HIM. I told everyone, in a matter of fact way. Hiding something carries the connotation of shame. Please trust me on this, your children know something is wrong and they believe it must be "bad." God forbid they've been told what it is and admonished to "don't tell;" if that's the case, you- as their mom, can remedy that. So, you have ms. So do millions of people.

Give your husband a loving, no I'm not being sarcastic, message from this tree hugger from SC you met. Please just be kind, b/c everyone (in 1 way or another) is having a really hard time right now- and your kindness just might make all the difference in someone's life.

Know that you are in my thought and prayers. Know that I really do "get it." Feel free to get my email address from my profile and email me anytime. Hang in there. It does get better- Promise. Love and Light... Shalom, Suzanne

[alishape]

Maybe he will never get it

I was talking to my sister about something similar last night. Of course, that was mostly about the battle of the sexes. Anyways, he might not need to "get it". He sounds generally supportive otherwise. Maybe if you can get him to quit the disparaging comments, that will be enough. I am not married, but I do have a girlfriend. She doesn't get it either, but she says that she wants to help me and to stay with me throughout this whole thing. She even helps me to take my shots. She is in charge of the hip shots.

I let her read some of my posts on this site, and it gave her a better understanding of how I feel. She still doesn't really understand how each individuals experience with MS is personal and unique, but it helped her to understand that I feel afraid and unsure about the future. She still supports me, but in a slightly different way. Maybe it'll help if he can read some of your posts and our replies.

[CGMoonbeam]

Sometimes my husband says some things that make me think he doesn't understand, but then he says that he doesn't want me to do so much and to take it easy. A lot of mixed messages sometimes. It's difficult to know what people are thinking. This disease is such a pain, because we don't always look sick. I feel abandoned by a lot of people, and I don't know how to confront them or if it's even worth my time to do so. I don't know what stage you're at with your MS, but if you can still walk and do things, it may not be visible enough. Denial is also a big problem. It's really tough to know what to do.

[gomer]

Lisa........

In so many ways the same goes here except for gender, Same with friends, even many past docs B4 format Dx.

My wife has NEVER seen me while hospitalized be it for diabetes, cancer surgery, kidney problems etc. Back in the 80s while in oncology followup, they wanted my wife to come with me to therapy, she REFUSED!

Five years ago my fam doc said my wife was going to HAVE to help with my insulin injections after shoulder surgery (fall injury). I told him she would not get trained unless he wrote her an Rx. I took the Rx to her and the diabetes center called to set the day/time.

She had avoided that for 25 years, but when the formal MS Dx came a few years ago, it was not so bad.

Everyone deals with things differently..........

Friends/relatives..... many years of endless snipping on the side, lazy you name it, even when I felt like a dead man walking. Since my MS has become more OBVIOUS to others, that has died down a lot.

Even DOCTORS in the past would write me off, dismiss anything they could not see with a naked eye (sometimes even then). IN 1987 the VA doc sent me to their shrinks because I complained so much. The shrinks said I was not nuts or even depressed, just "adamant" something "else" was wrong. After that, I gave up seeking answers, till 2009 a new eye doc opened the MS can-o-worms wide open and BINGO!

Gomer Sir Falls-a-lot

.

[Cat Mom]

Lisa, I apologize in advance for my abruptness, Imagine said it nicer and better than anyone and I don't mean to sound, well, mean... but what kind of garbage is "lazy" and "not wanting to tell friends" about your MS!!!!

I can't get past "lazy" to be honest, you are newly diagnosed and whether he likes it or not... you're REALLY SICK!!!!! This isn't a passing illnes, it's not something that "acts up" now and again like an old sports injury. MS doesn't discriminate; it doesn't matter if you don't have any kids or many.

The other part that rubs me the wrong way is how he doesn't want you to tell your friends because "he can handle it". I don't think I have to tell you that he's not handling it at all. It's you that has to handle it, not him. I agree with Imagine that it gives the impression that it's something to be ashamed or embarrassed of but more importantly, by not telling your family/friends, this cuts you off from a very important and vital support system that you need. There are so many MSers who do not have any family or close friends and would give anything to have a support network, even someone to have a much needed laugh with, so I urge you to try and change his mind on this one. If anyone looks at you with "pity" it's probably only because they care and feel absolutely helpless.

You said that his mom would kick his butt if she knew he was being so disrespectful and uncompassionate so maybe it's time you recruit her support to get through to your husband. He does sound like a good guy but he's a guy... sorry guys, I'm not being insulting! A lot of men take on the role of "fixer", not in the hammer and nails way, but they think that being a man means being able to fix whatever is wrong, even when it's out of their hands.

It might take a bit more time for him to adjust but please don't let his mindset interfere with your health and any progress you may be making towards your own adjustments and especially that of your kids.

Wishing you the best,
Jen

[Sir-Voor]

Find a MS seminar with experts in the field, not with just MS nurse like CHAT has.
Years ago my wife and I went to one and wow it helped.
She does not full understand, but she now fully accepts that MS fatigue is real. Also they talked about upcoming treatments and such, and that helped with our fears of the future.

There are not online video chats and seminars that you may want to check out.

Also learn and teach him the effects of stress on a person with MS and how to manage it. Also learn about exercise and diet, being proactive will help you both physically and mentally/spiritually.

And here is a little fact that can share with him; 75% of people DX. with MS stop working within 10 years and fatigue is the number one reason.
It was 80% 10 years ago when I got Dx. and FYI I’m still working full time.
In fact thank to the drug Ampyra that I started in May of 2010, currently I work full time and can start yard work or whatever without needing a hour or two of down time first.

With a think there are 5 new treatments coming out aspect to come out in the next year or so, and a lot more in the pipe-line, hope for the future has never been better.


LOL or you can put some ankle weights on him in the morning and send him off to work, and when he gets home smug one lens of his glasses with grease and tell him to go play with the kids and then do some laundry.
At the end of the day tell him “you just had one of my good days.”

[Ringer1319]

LOL or you can put some ankle weights on him in the morning and send him off to work, and when he gets home smug one lens of his glasses with grease and tell him to go play with the kids and then do some laundry.
At the end of the day tell him “you just had one of my good days.”

Ha I love this suggestion!


Lisa, in all honesty... my husband was like that in some ways when I was first diagnosed. He still sometimes thinks because I have energy to do one thing, that I have energy to do other things. All I have to say now is, "Spoon Theory Babe" and he understand what that means.

The Spoon Theory is a good way to explain your MS to others... in a way they can understand to the best of their abilities.
Here is the Spoon Theory: http://www.butyoudontlooksick.com/ar...e-miserandino/

As for saying your lazy... I have heard that one before too. I tell people, look would you like me to be "lazy" for right now or go in to a flare with who knows what kind of damage done. Kind of look at it from the "big picture" in a way. Here is a neat activity a local MS chapter did at a mall for people to understand MS as well:
http://www.youtube.com/watch?v=9vIBFDpj4wk

Hope this helps!