Marriage & Multiple Sclerosis – Love, the Husband xoxo

(Prologue: When I first told Collin I wanted to write about both his and my experiences of Multiple Sclerosis in our marriage, I wasn’t sure what to expect from him. For me, I have always journaled my thoughts in which Multiple Sclerosis has affected our marriage on a particular day, hour, or minute, but I didn’t know what Collin thought about those same experiences. Sure, we have and have had conversations when an issue or situation arises, or when I’m feeling down and fearful, but I wasn’t aware of what comes to mind for him.

I asked Collin to take a few weeks to think about the ways in which my MS has affected our marriage. I told him that had literary freedom to illustrate how MS has affected us in any way he feels worthy of highlighting. After all, this was for the blog…to help other spouses, caretakers, friends, or family who may need to hear his story. What I didn’t expect from this ask of him, was how much I would learn about his heart and mind in this experience…because this is as much his experience in this marriage, as it is mine. Side note- it was also funny to see how each of us took on this project. He’s also a bullet point kind of person, but with 3 main points of focus, while Marriage & MS (Her Edition) was more of a story with each bullet point explained lol.

I insisted he talk about the good, bad, ugly and pretty, in whichever way he wanted. Below, are word-for-word his thoughts…unscripted, unedited…raw and real.)

Here was his email:

“Here are my notes. I tried to keep it “flowing” and pretty straight forward. But I also may have rambled at some points. But I think that’s ok cause it gives you more than you need, and you can choose what you want or don’t.

Attentiveness

Needing to recognize how you’ve felt, how you are feeling, and how you are going to feel for most things.
Whether it’s daily plans or future plans (vacations, events, etc) it is a change and impact on how we (or even I) as a couple have to go about doing plans.
- You’ve probably noticed by now how it’s typically me having to plan ahead to make sure that you are up for the plans we have, and/or if you’ll be able to make the full itinerary or if we need breaks or just have to call it. (AKA wearing heels to walk around the city……)
- I think it also causes a strain between us because it’s stubbornness vs stubbornness. Such that I don’t feel any issues stopping early or having to pass on some items if it means that it’s less strain on you, but at the same time I know that’s not what you want. So there are times you want to do these things (and may be fine to, just cautionary on my side) and this might come across as me thinking you’re incapable or just being annoying by holding you back with worries, when your pride wants you to prove you can do these things (even if it means paying for it later that day).
Might be minor FOMO or regrets (regrets is a poor word, but idk how else to explain since I don’t really ever have regrets about it, more afterthoughts) due to not being able to do all the things that I could probably do by myself.
- Such as if I wanted to tour a whole city in one day due to time, I probably could do all the walking, touring, standing, etc by myself and maybe be tired but still fully capable.
- But I would never want to do those things without you, even if I know you would probably be like no go do them, it still puts me in a position to make a choice between you or something else. Which I wouldn’t want to/will do even if it is something I want.
Long story short, it has made me better (couple wise) being put in a routine of being aware of how you feel or could feel based on our plans. This is a good aspect of it. But a bad aspect I think is that we’re still new and working on how to properly communicate those to each other, as we both mean well, but sometimes it could come across as me hand-holding or worrying too much, or you being too prideful or not wanting to hold us back and being stubborn.

Communication

Following off the last point, I think another pro/con is communication skills that stem from us having to talk about MS.
Obviously health issues, especially one that at first you weren’t comfortable talking about with others (I think), makes it uncomfortable to have to open up to someone about it completely.
Nobody wants to wake up one day and be like my legs are too sore to do anything today, especially at an age where they shouldn’t. So I’m sure that’s uncomfortable and embarrassing to have to get in the habit of doing on a more than usual routine.
- I think this is where both good and bad stem from.
- Good, it places us both in a position to have to be able to communicate with each other uncomfortable things. Both on the listening and understanding side, and also on the speaking side of putting uncomfortable thoughts into words and having to actually share them with someone. It’s a good trait to be able to share vulnerabilities with someone and to also listen to someone’s vulnerabilities and be able respond to those without making someone more vulnerable/uncomfortable.
- Bad, it’s an abrasive process when first starting off and getting used to it. Maybe I don’t understand the intent behind the words and try to play them off to put you at ease. Instead, that only makes you angry because it comes across as me not actually caring. Or maybe you don’t want to talk about it because it’s just not a good day for you, and that comes across as you not trusting me to share or opening up to me.
- All in all I wouldn’t call it a bad but there is a learning curve which creates room for tension or conflicts, which if not handled correctly I would imagine can lead to something bad.

Sympathize vs Empathize

This is one that I probably struggle with the most and causes me the most grief.
Invisible diseases is the best definition when it comes to MS. Both internal and external, but at the same time affecting the source and bystanders.
- Be it the symptoms, feelings, mental state, etc all of them typically 90%+ of the time are invisible in the most direct sense.
- Limb numbness, migraines, sore muscles, tingling sensation, motor control, none of these are visible to a bystander. The only signs are the after effects such as your mood, your activity, your words, which can lead to which of these are happening or how they are affecting you. Which causes an issue of how self-aware is someone and can they notice these and then actually be able to attribute them to MS, or just a bad day.
Fixer hat time (this is where you mention Men are from Mars book), how does someone (specifically me, but not sure if you’re trying to keep this vague) try to empathize, let alone sympathize, when he gets frustrated because a) he doesn’t understand/see the issue which irritates the engineering/logic mind, and then b) try to solve said problems which he doesn’t understand physically or mentally.
- This pertains to me personally, but I guarantee whether someone is reading this piece is a guy or girl, the same stands.
- For a guy this is most likely in line with how one will feel. Maybe minus the engineering part.
- But for a girl, I’m sure this leans towards the communication topic than the fixing side.
- A guy with MS most likely won’t want to talk about these things, plus hardly be able to explain them to someone. So if he doesn’t talk I’m sure that would put his partner in an awkward situation of feeling like they can’t help since he doesn’t communicate or want to “open” up to here. (queue your link for Men are from Mars again!!).
This is something maybe you’d be better to talk to. But it’s an issue of not being able to see/understand the problem, and therefore not being able to solve the problem on both sides.
How does one describe everything that is going on to someone that doesn’t have MS? How does someone who doesn’t have MS understand the issue if they aren’t at least told what is going on? Yada yada.
But it’s a good exercise in awareness, communication, and trust. Like everything before there is going to be a learning curve of figuring out the bumps in the road of trying to understand how you both cope with all of these. In the long run though it is all beneficial, and not just for MS.