We don’t get to choose whether or not we get MS, nor do we get to choose when we get that diagnosis. For some, it comes while in a relationship and for others it comes outside of one.
Either scenario forces the following self-reflection: does my partner stay with me? and, do I disclose my situation on a date?
MS is difficult because it turns partners or potential partners into caretakers.
It fosters self-doubt after the diagnosis: is 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 everytime you want to have a conversation with someone so you forget what you were saying and is up at all hours of the night making it hard for anyone to sleep.
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. As a person with the diagnosis, I am trying to learn what I am capable of doing and what my limitations are. 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 sickness to come that early in the relationship. MS is an unpredictable disease that could take years to manifest itself into the debilitating disease 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?
Rather, 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 and after several more “are you sure?” conversations, I calmed down over the whole matter.
I recognize that I am extremely 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 the 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.
And that isn’t even mentioning the depression that can lurk from MS. This 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: knowing that it can cause a random bout of pain, ruin a date night, or induce depression can be handled if there’s a contingency plan in place.
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 I am in pain, 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 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 that it turns into SPMS (if it does!) because it will be harder for me to maintain my positive disposition if my brain won’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 in relation to them.
In the moments of needing to shift our plans, there are feelings of frustration, but it is important to communicate with each other 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, sitting on that couch and watching terrible TV, but moving around it (not ignoring 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.
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