How has MS affected our lives? I interview my wife

Exploring and sharing my life with multiple sclerosis is a source of pride for me. I’m honored to share what my life is like so that others can learn and that those with the disease can also feel less alone. I want others like me to read something I write and say, “I’m not alone” and “This guy gets it”. It’s a bonus if someone can use something I wrote to further spread understanding and awareness by sharing it with others. However, this MS journey is not mine alone. Our families, significant others, and caregivers are a big part of our lives with MS and their experience in this journey is every bit as important and deserves to be shared. This post is something I’ve wanted to do for a long time, I’m going to interview my wife about our life with MS. This will actually be the first time I’ve asked her many of these questions, so this should at the very least be interesting to me. I go into this knowing that some of these answers could be hard for me to hear.

Q. Aimee, when you first met me, it was through a friend, who told you I had MS (I’d already been diagnosed for about 12 years or so at that point). Knowing that when you met me, did you have any expectations before you saw me? If so, how did I live up to them?

I didn’t know a whole lot about MS at that point, other than a general idea that it was a neurological disease that affected speech and walking. Our friend had mentioned it only an hour or so before we went to meet up with you guys, so I didn’t stop to google it or anything. When we met, you seemed like a normal (albeit slightly boozy) guy with nothing noticeably different from your friends. You were pretty excited that you had gotten back to driving recently and seemed to be on an upswing.

Q. When was the first time when you realized that I had MS, not knowing it, but when did it hit you? What happened, what did you see that made you think, oh right, this guy has a disease?

Hmm. It’s hard to pinpoint a specific thing because you seemed really normal on our first couple dates. I think your alluding to “needing some recovery time” after we went out was one of the first indicators. Of course, you were recovering at home, out of sight, so it took awhile for me to realize just how much certain activities would knock you out. In fact, looking back on it, I’m pretty amazed that we walked around the city as much as we did in the middle of summer. You must have really wanted to make a good impression!

Q. What was it like explaining to your family that you were seriously dating a guy who had MS?

It wasn’t that big of a deal, really. At that point, it hadn’t had a huge effect on me. I knew there were implications for the future, but I was sort of in a “we’ll cross that bridge when we come to it” mode. I didn’t really know anyone with MS before I met you, so a lot of what I explained came from stuff I read on the internet, which we know can be of varying quality. Basically, it was just a facet of who you were that I thought they should be aware of.

Q. When things got serious between us, did you have any reservations or concerns about a future together because of my MS?

Of course - I’d be lying if I said I didn’t. They were all over the place too, serious things like “Will I be a widow?”, “How soon?”, and “Will I be a single parent if we have kids?”, and more trivial concerns like “If we buy a house at some point, does this mean I have to cut the grass?” and “If you’re not supposed to drive, does this mean I am the permanent designated driver?”. All sorts of stuff. I did think hard about it. Then I realized that I could get hit by a car tomorrow, or get cancer, or lose a limb, etc. You can’t really take anything for granted. At least knowing you have MS gives us some sort of idea of what the future might look like and what the issues we will likely face are. Having that knowledge allows for at least some type of planning, even if it’s difficult.

Q. From your perspective, how has my MS affected our daily lives together?

I’d say we got comfortable with each other really fast. Going to someone’s doctor’s appointments with them, helping them up when they fall, and seeing them in horrible pain (which I’ll talk more about in the next answer), etc. really breaks down barriers. Being by your side through this has also made me worry less about the small stuff and to not take things for granted. I consider myself a planner who likes to have things pretty well organized. MS has a way of messing with even the best laid plans (as you’ve mentioned in several articles). I’m a lot more flexible and open to change than I was just a few years ago. I try not to lock us into plans, knowing you could have a bad day that could preclude us from doing something. If I do make plans, it’s under the assumption that we may have to cancel them, or that I might be attending an event alone (which I have become much more ok with these days).

Q. MS isn’t all sunshine and rainbows. You’re a strong person, but I imagine you’ve seen some things that can be hard to see, things that maybe upset you. Care to share?

Definitely. Seeing you in pain is really difficult for me. I’ve learned things that help and don’t help, and ways I can try to make you more comfortable, but many times, there’s simply nothing I can do. That part is the hardest. I’m a doer, so feeling totally helpless is really rough. Obviously, it’s nothing compared to the pain and discomfort you experience, but it does take a toll on me. Going to the doctor’s can be a little intimidating too. I’ve been extremely fortunate health-wise so a lot of these appointments and issues have been completely new to me. Another thing that can be jarring is when you go from seeming 100% fine (and I realize that’s just a surface appearance) to laid out on the floor and having very slurred speech all at once. It’s hard to see you fumble for a word for something when just five minutes ago we were having a deep conversation.

Q. A lot of people with a chronic illness like MS worry about having children, do you have any concerns about that?

I do, for two reasons. One, there’s always the worry that they might develop MS as well. MS isn’t like something like cystic fibrosis or Huntington’s that has a clear genetic inheritance pattern - it would almost be easier if it was (not that those diseases are easier to deal with, that it would be easier to screen for the gene in embryos knowing that you/we had it). Knowing that your grandfather also had MS is a bit scary in that regard. The second reason is that I worry about my ability to be both a caretaker for you and a parent. At this point, my “caretaker” duties are pretty minimal- mainly just doing most of the housework and medication/doctor management, but they could become pretty involved. Not knowing the timeframe of that and also working full-time doesn’t leave really any time or money to devote to kids. If we won the lottery and could hire an awesome full-time nanny/housekeeper, things would be a lot easier!!

Q. The future is always on the mind of those affected by MS, do you have any concerns or thoughts about our future because of my MS?

I got into this a bit in the last answer. Obviously there are a lot of questions about the future - Will we have kids? How fast will things progress with your illness? Will we see a cure in your lifetime? These are all wide open, which is a bit scary. We may be able to expect certain things and plan for them, but not knowing means that you have to live each day as it comes and make the best of it.

Q. How has what you knew/thought about MS differed from what you’ve actually experienced with me?

I would say most of the stuff I knew was correct, but that was such a small percentage of what I know now. Like I mentioned before, I didn’t know a ton about MS other than it was neurological, led to walking and speech difficulty, and that it was more common in middle-aged women. Aside from that last part, the rest does apply to you, but there’s so much more. I’ve learned way more about the disease both from seeing it firsthand and reading about it on sites like I think the biggest difference is that it’s so different for everyone.

Q. Have you seen any positives about our life with MS?

For sure, I think my outlook has changed a lot. Like I mentioned earlier, I’m a lot more flexible with plans and try to focus less on planning every minute of my day. Also, I realized that I’ve taken a lot for granted in my life, so I try not to do that any more. For instance, I’ve been fortunate to have excellent health - I now realize this makes me really lucky, and I try to take better care of myself because of that. Sure, I may despise exercising, but I’m lucky to be able to hop on an elliptical or go for a jog around the block, so if I do do those things, I tend to complain less about them!

Q. Anything else about our life with MS that you’d like to share?

It’s been an interesting ride so far. I’m sure it will be harder in the coming years (but maybe it will be easier, who knows). I try to take things a day or a week at a time. Reading the comments on your articles has been really informative for me - it’s helpful to see that others have the same issues you experience, so I imagine there are other spouses/caretakers in my situation as well. I haven’t read many spouse perspectives, but I always imagined/saw that they’d be from people much older (and with more advanced disease) than us.

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