Keeping the Spark Alive When Your Partner Is Also Your MS Caregiver

Balancing the needs of our relationship with the needs of my health is a constant challenge, but I’ve learned a lot during the 6 years of our marriage.

When my relationship with J.P. (now my husband) turned serious, I leveled with him about my multiple sclerosis (MS). Because I walked without aid, at times, I appeared perfectly healthy. But my legs would occasionally wobble, and even in those early days, I tired easily.

I have a relapsing-remitting form of MS, and although I generally recover from each relapse, there is a chance my disease will progress over time. This makes for an uncertain future.

“You need to know that I might depend on you one day,” I told him.

To my great relief, J.P. didn’t even flinch. “I’ll be there,” he said, squeezing my hand. “I want to be the one pushing your wheelchair.”

At these words, my eyes teared up. Although it wasn’t the sexiest moment in our relationship, I felt truly loved for something beyond my body.

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Building a life together with MS

J.P. and I had so much in common, from picking through yard sales to collecting used books on history and literature. In the summer of 2017, 2 1/2 years after we first met, we married on our deck, both of us wearing shorts and T-shirts.

Retiring early from my job and reducing the stress in my life helped lessen my relapses. However, over time, my fatigue worsened, and I began to lose sensation on the bottoms of my feet. This means that I began to rely on J.P. more and more.

Although I still walk without a mobility aid, it’s now necessary that he carries a little more of the housekeeping load and takes on some of the errands I had previously done myself. Because of the issues with my feet, I also depend on him to drive me to my doctor visits and treatments.

Fanning the flames

While we spend more time together than ever, I know that J.P. bearing more responsibility for me risks dowsing the spark between us. Balancing the needs of our relationship with the needs of my health is a constant challenge, but our marriage of nearly 6 years has taught us both so much. If you, too, live with a chronic illness and are in a romantic relationship, I hope these pointers will help you keep the spark alive with your partner.

Communicate

Any successful union depends on clear and open communication, but it’s even more important when one of the partners is chronically ill.

J.P. and I keep a calendar where we list weekly commitments for routine activities. But because my health varies, we start each morning by revisiting these goals and readjusting as necessary.

I am honest with him when I’m feeling fatigued and when it’s necessary for him to take over small errands or chores that I usually handle, such as folding and putting away the laundry. At the same time, we must also communicate about our individual needs as a couple.

“Are we spending enough intimate time together?” is one question we frequently ask each other. Depending on our needs, this could mean either sexual relations or cuddle time on the couch or both!

Prioritize special time

Because we are very active in our church, keep a garden, and have three dogs, and I occasionally take on part-time writing gigs, our days pass very quickly. Add my doctor visits and treatments to the mix, and it’s all too easy to neglect special time as a couple.

Our romantic moments are decidedly outside the norm for most people and may include outings such as exploring an abandoned cemetery, discovering an old edition of a poetry book in an antique store, and watching the cherries from the tree we planted together ripen.

Because our life is relatively simple by most people’s standards, a “date night” is often nothing fancier than a Turner Classic Movie and popcorn on the couch. Taking advantage of little moments such as these makes it easier for us to keep the romance alive.

Keep hobbies and friendships

Because J.P. and I have so much in common, I run the risk of becoming dependent on him not just for my health needs but also for intellectual and emotional stimulation. This is why we both maintain separate hobbies and friends.

While I enjoy writing, J.P. is a clock aficionado and loves tinkering with his extensive collection of old pocket watches. We also take great care to keep the friendships we enjoyed before we came together as a couple. Paradoxically, maintaining our separate hobbies and friendships has strengthened us as a couple. When we come together, we have an abundance of stimulating things to discuss. “Would you read my new poem?” I frequently ask him at the end of the day. And he enjoys reading to me from a book loaned by his friend Neale.

Reciprocate

Because of my MS, I have numbness and weakness in my legs. J.P. helps alleviate these symptoms by massaging my legs nearly every night. This does more than feel good. It helps stimulate the nerves in my legs and improves my walking. In addition, in the worst of summer, when the heat renders my legs into wobbly noodles, he helps restore my strength by wrapping cooling towels around them for me.

These efforts go a long way toward helping me cope with my disease, but they take a great deal of energy from J.P. He is much more active than I am, and unfortunately, he experiences back pain and pulled muscles quite often. The good news is that I appreciate the opportunity to reciprocate by rubbing his lower back or massaging his shoulders.

If you rely on a romantic partner for caregiving, I highly recommend finding a way to give back. But it doesn’t always have to be physical. You can reciprocate by offering a kind word and a smile or by engaging in a conversation about something your partner enjoys. The smallest of things often bring the biggest rewards, emotionally and physically.

Show gratitude

During the ups and downs of life with MS, it can be easy to take your caregiver for granted. I find it essential that I show my appreciation to J.P. for all that he does. When he’s out running errands, I try to send him short text messages with funny pictures of our dogs to make him laugh. This is my way of showing that I’m thinking of him, even when we’re not together.

He is also a great fan of a home-cooked meal. Because cooking is my specialty, it brings me great pleasure to make his favorite dishes as often as possible. Because I tire easily, I whip together a double batch when I can and freeze the leftovers, thus ensuring that a hot and delicious meal is only minutes away, courtesy of the microwave. And it brings me as much joy as it does him.

Laugh

Having MS and needing help is a serious matter, but this doesn’t mean we can’t find humor occasionally.

J.P. and I both have a silly streak, which makes it easy to laugh. Whether we’re chuckling at the antics of our dogs or old reruns of “Saturday Night Live,” we make sure to include a regular dose of the world’s “best medicine” in our daily lives.

We’ve also been known to make others laugh. Sometimes, we like to sneak a kiss within the aisles of a big store, only to discover we’ve been spotted. People just shake their heads good-naturedly, and sometimes they’ll even say: “You two lovebirds.”