Does MS 'diagnosis' help spouse in understanding your symptoms?

[tommylee]

I'm so sorry, CatMom and TommyLee. I can't imagine why it wouldn't.

Perhaps because it is difficult to understand anything one cannot accept?

My wife cannot accept the idea that there is something wrong with me that cannot be fixed.
Fifteen years post Dx and she knows nothing about MS. She seems to avoid any knowledge about MS at all costs.

I think it is more stress than she can handle so she just shuts it out.

[MrsBones]

I'm so sorry, CatMom and TommyLee. I can't imagine why it wouldn't.

Made no difference here, either. Not that Mr. Bones doesn't do his best...he's fantastic. There're two things happening, though.

First, unless you get MS, you can't really "get" MS. An understanding, compassionate person will do their best to understand what's going on with you, but without experiencing something like the mind numbing fatigue so common with MS for themselves, they simply can't understand. Off hand comments like, "I fixed the leaky sink, cleaned the garage and washed the car. I'm a bit tired, but do you feel like going out tonight?" while you're struggling to shower that day may come across as insensitive to some. It's not meant to be, it just sounds that way. They don't understand and you can't make them. You can explain what's happening and hopefully, they will understand that you are experiencing something they may not really get, but that they might be able to help you cope with.

Second, even with a diagnosis, those who like facts and a bottom line answer, simply can't have them with MS. You might get a diagnosis of MS, but what does that mean for you, exactly? You can take a list of possible MS symptoms into a room full of 100 PwMS and I'd doubt you'd find 2 people who have the same set of symptoms or if they do, experience them in the same way. Additionally, a person might experience those symptoms one way today and a totally different way tomorrow, or not at all. It's very difficult to get a grip on a disease your loved one has when it can be different from day to day or even hour to hour.

There isn't even a clear cut treatment plan. Our symptomatic meds are for the most part, made for other diseases. Our DMDs don't work the same way for everyone. It isn't something like diabetes or heart disease, where you can take a med and have a reasonable expectation of what it'll do for you.

I think that the diagnosis itself won't make a difference to how your spouse understands, not really. You'll have a why, yes. However, how they deal with that why really boils down to the type of person they've always been.

[Cat Mom]

I'm so sorry, CatMom and TommyLee. I can't imagine why it wouldn't.

I can't either! We've been together for 16 years, I've had MS for 8. He does put on a good show around his family and in public, comes to my neuro appointments, etc. I'm not "needy" in the least bit, always try to do things for myself before asking for help.

My side of the family consists of my 3 adult kids (2 of them have a spouse) and my sister... that's it. No aunts, 1 elderly uncle. The closest cousin is in Delaware.

He doesn't look after HIS OWN illnesses/conditions so I guess I shouldn't expect much!

Jen

[aspen]

Hubby decided to see a counselor, upon my counselor's recommendation. They have met 3x now, and it is helping him ... not that he talks about it much, but he is definitely being more patient with my forgetfulness and fatigue (the things that were driving him batty). His counselor is an older gentleman whose wife has chronic medical issues. Things are less stressful here; not circumstances, but atmosphere.

I know that not every spouse would be willing to do this. I'm beyond shocked (and grateful) that my husband is. Previously, he always viewed counselors/therapists warily.

Tommy, it sounds like your wife has stayed in denial. I'm sorry. Mrs. Bones, your post was very helpful ... and truthfully, I don't even get/accept the symptoms .. why should I expect my husband to?

How are you all doing at this point?

[MrsBones]

Hubby decided to see a counselor, upon my counselor's recommendation. They have met 3x now, and it is helping him ... not that he talks about it much, but he is definitely being more patient with my forgetfulness and fatigue (the things that were driving him batty). His counselor is an older gentleman whose wife has chronic medical issues. Things are less stressful here; not circumstances, but atmosphere.

I know that not every spouse would be willing to do this. I'm beyond shocked (and grateful) that my husband is. Previously, he always viewed counselors/therapists warily.

Tommy, it sounds like your wife has stayed in denial. I'm sorry. Mrs. Bones, your post was very helpful ... and truthfully, I don't even get/accept the symptoms .. why should I expect my husband to?

How are you all doing at this point?

I'm glad the counselor is helping! You both have to come to terms with whatever it is you do have. Sounds like the counselor is the right step for both of you.

I hope you do get your diagnosis soon. Sometimes that means better treatment options.

[misslux]

aspen, that is awesome! I think it is so important for the other non-MS person in the relationship to be able to talk to someone else in a safe and confidential space.

My SO is seeing one currently (obviously not the same one I see) and like yours, doesn't talk about it much and I don't ask because it's not any of my business of course. It's his thing and his choice to tell me (or not tell me) what they discuss. I am just estatic that he has a safe, non-judgemental place to talk.

I'm still pretty functional still (I am self-employed, cook, go to my numerous appointments by myself,, etc.) but I still need help with some ADL. Little things add up! It sure ain't easy being the spouse and paying for someone to help me 24/7 isn't an option, so that's why I think it's great he can talk to someone.

[90stangg]

Made a big difference here, she left me. Didn't want to know anything about MS. In her head I was dying and that was what she told my kids It's been 21 years so far and i'm not pushing any flowers yet

[misslux]

90stangg, I'm sorry you had to go through that.

[aspen]

90stangg ... I'm so sorry.

[minnie76]

hi,
so sorry 90stangg that you've had to deal with that. one would think that our spouses should be our greatest supporters.


minnie76