Love & MS

This post was originally published in February 2018. I’ve updated it to include a follow up since the original publication.

We don’t get to choose whether or not we get MS, nor do we get to decide when we get that diagnosis. For some, it comes while in a relationship, and for others, it happens outside of one.

Either scenario forces the following self-reflectiondoes my partner stay with me? And, do I disclose my situation on a date? MS is challenging because it turns partners or potential partners into caretakers.

It fosters self-doubt after the diagnosisis my partner with me because they feel obligated? Do they resent having to care for me? Are they only interested in me because they have to “fix” me? What happens if they leave or die before me?

It is little wonder that many bloggers and experts refer to MS as the third wheel in a relationship. It’s an unwanted obstacle that can put a strain on any current or budding relationship.

The Third Wheel

MS is the unpredictable cousin that comes into your life and needs a place to crash until they get on their feet. They take up space on a centrally located couch and refuse to leave when you want to watch a movie with your partner (or bring a date home). They say they are looking for a job, but really spend all day watching half-hour courtroom shows with ads for injury lawyers.

It’s that cousin that interrupts you every time you want to have a conversation with someone. Because of the interruption, you forget what you were saying and get frustrated because you can’t remember.

Simply put: MS is an unwelcome third-party to your relationship that isn’t going to leave anytime soon. No matter how many times you ask it to get its act together and move on.

Trying to figure MS out and how it factors into a relationship is extremely hard. In addition to maintaining a relationship, I am trying to learn my limitations. How much do I put on or ask of Ash? Should I even ask him to help? Is the relationship lopsided? Am I really that bad that I need his help? Or am I just imagining things?

MS is always hiding in the background of every thought or action I take. I have to plan out my day to make sure I have enough energy for when Ash gets home to make any interactions with him meaningful. I have to pause frequently and ask myself: am I feeling this way because this is normal for someone who only got 4 hours of sleep with a teething toddler, or is this because of the MS?

As you can see, I ask myself a lot of questions. I tend to overthink things, and so it takes a lot of energy to manage my MS. So when it is time for quality time with Ash, sometimes I just don’t have what it takes to be the partner I think he deserves.

My Post-MS Diagnosis Love Story

When my neurologist said it was MS, after the initial relief of finally having an answer, my next thought was that Ash had to divorce me.

We just celebrated our second wedding anniversary several months prior, so in my mind, it wasn’t too late for him to file for divorce. We’d been together for four years at that point, and while that was a lot of time poured into the relationship, it still hadn’t been my longest relationship at that point.

He was still young enough that he could find someone else, and they could actually start a family together. While he may have vowed sickness and health, no one actually anticipates the illness to come that early in the relationship. MS is an unpredictable disease that could take years to manifest itself into the debilitating illness; everyone knows it to be, or it could happen within the year.

Ash would have to become my primary caretaker as my spouse. He didn’t sign up for this, and I certainly didn’t. The level of unpredictability was frustrating, and I am a firm believer of the “if you love something, set it free” mentality. My parents just moved down to be near us, so I would just go live with them and figure out what to do with myself until the inevitable.

Ash and I had the conversation – do we stay together, or do we go our separate ways?

Instead, it was, I had the conversation, and he sat and patiently listened until I was done. 

The answer he had and continued to have every time I brought it up, was “No. We stay together.” He had signed up for this, and he took his vows very seriously. He loved me through sickness and health, no matter when that sickness came into the relationship, and no matter how extensive it was.

I am grateful that he wanted to stick it out. After several more “are you sure?” conversations, I calmed down over the whole matter.

I recognize that I am incredibly fortunate and that not every person with an MS diagnosis has a partner or one as understanding. I do not take Ash for granted because of this. MS is rough for both the person with it and for the partner looking at becoming a caretaker.

It boils down to not knowing what happens from one moment to the next.

Unpredictability of MS

Part of the problem is that MS, like many autoimmune diseases, is extremely unpredictable.

One moment you could be feeling fine, and the next moment you could be doubled over because you’ve been struck by the “MS hug.” It is hard to be intimate or even touched during those painful moments.

Date nights could be planned well in advance, but they become meaningless if the very act of getting out of bed is too much to bear.

Not to mention the depression that lurks from MS. The “I have a brain lesion that is activating a specific part of my brain that is causing my depression.” Medication can help, but it isn’t a “simple snap out of it” when the brain is being triggered to perform a specific way by the disease.

Embracing the unpredictability of MS helps in these moments. Creating a contingency plan help if there’s a random bout of pain, low energy, or dark moment of depression. 

If I intended to cook a special dinner for Ash but can’t because of fatigue, I might scrap the dinner and say we’re getting delivery for the night. If a muscle seized, Ash might find a way to massage that particular body part for me to help induce hormones that will relax the muscle. If I am too depressed to do anything, Ash will stay home to watch Jai and try to get our cats to hang out with me while I rest in bed.

Knowing that plans no matter how big or small, may change at a moment’s notice and being okay with that change helps prevent resentment from either partner. Pre-emptively agreeing upon a secondary option for a date night out (and turning it into date night in) can help mitigate problems down the road.

Learning self-acceptance both as the person with MS and their partner helps matters too.

Everything Will Be Okay

The key is to be understanding and loving to yourself when MS is unpredictable. As someone with RRMS, it is easier for me to get through my bad days or moments than it might be for someone with PPMS or SPMS.

I am dreading the day if my MS every shifts into SPMS. It may be harder for me to maintain my positive disposition if my brain doesn’t allow me to think positively.

But in the moments of “normalcy,” I try to remember that everything will be okay. Sure, it was unfair that this happened to Ash and me. Sure, I may never get back to feeling 100%, but I do have someone who is caring for me and does not judge me based on my disease, but on who I am to them.

When we have to shift our plans, there are feelings of frustration. Still, it is essential to communicate that frustration. Ash is very easy going and goes with the flow, but I have to say that I am frustrated I couldn’t do “x, y, and z” for him. He tells me that he is okay with it, and we figure out what else we can do instead.

Learning to let go has helped me so much.

MS isn’t easy on a relationship because it is always lurking in the background. It’s sitting on the couch and watching terrible TV, but moving around it, and adapting to it helps reduce the strain in the relationship.

Who knows, maybe one day it will put mute on the TV and let you have a thorough conversation with your partner without interruption.

2019 Update

I feel like I addressed most of what I wanted to in this post, so there is little need for an update. 

Ash is still a fantastic partner. He takes time to help take care of Jai and me when I am having a rough day (or two). As I’ve taken better care of my health, I’ve found my symptoms lessen since initially writing this post. Ash can shift out of the caretaker role and is a partner more often. 

As I lower my stress, so do some of our old conflicts. Often my anxiety was tied to feeling frustrated. I would make a big deal out of something, express it to Ash and not receive the response I was looking for, and it led to conflict. But by letting go of old stress-triggers, I find there is less disagreement in our relationship. I’ve mellowed out, and it’s benefited not just my health but my relationship.

Because my MS has stabilized, Ash and I do not have to factor it into the relationship as much. It still impacts me from being as social as I might want, but Ash is a homebody, so it works out fine. We still have to take Jai into consideration, but that’s normal for any couple with a child.

While MS is still a third-wheel, while it is still an unwelcome house guest, we’ve adapted enough that its impact isn’t as significant.

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Featured Photo Credit: Michelle Melton

4 thoughts on “Love & MS

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