This Is What It's Like to Love Someone With SPMS
Secondary progressive multiple sclerosis doesn't make relationships any easier...but it can make your love grow stronger. by Alex Golden
Any human who’s ever been in love knows that relationships (and marriage in particular) take a fair amount of tending in order to flourish. But now imagine tossing in a chronic illness that makes it challenging to walk from the bed to the sofa, raise a spoon to your lips without spilling, or even use the bathroom alone—let alone help with all daily to-dos like cooking, cleaning, or even working. That’s the predicament of couples in which one partner has secondary progressive multiple sclerosis (SPMS), an advanced stage of the disease characterized by a steady worsening of symptoms over time despite treatment. News flash: It’s not easy. But it’s also not the end of everything either. In fact, sometimes SPMS can be a new beginning. We spoke to three couples who are overcoming the obstacles of SPMS to make their marriage work—and we can all learn from what they have to say.
Nicole Monfredo and Scott Rickards
After living with MS since 2010, Nicole Monfredo of Worcester, MA, transitioned to SPMS in 2017, and needs a wheelchair 85% of the time. She needs help showering and changing clothes. She’s in pain all the time and tired all the time. Sometimes it’s exhausting just to sit up and watch a movie. And yet, her relationship with her partner, Scott Rickards, has never been more solid.
“We do more together now,” says Monfredo, 46. “We’ve been together 17 years, but started official date nights just five or six years ago.” Being in a wheelchair has some advantages over using a walker, since now when they go for walks, they can hold hands. “We learned to appreciate the little things because with MS, every day is different. Every hour can be different.” They take as many trips as they can because in the future, they know they might not be able to travel.
Since Monfredo had MS when they met, Rickards knew what the future could hold—and chose to be with her anyway. He works nights as a dispatcher so he can be home with her during the day. “I’m able to go with her to her doctor appointments; if she’s having a good day we can spend the day together, or if she’s having a bad day, I can keep up with the housework,” says Rickards, 47.
Monfredo feels extremely lucky to have Rickards. “Most men would not want to stick around knowing this prognosis,” she says. It’s true that Rickards not only works full-time but does most of the housework and pays for their handicap-accessible van and home. He ties Monfredo’s shoes and washes her hair. If there are dinners or parties, they must host. “It’s lots of wear and tear on us, and there are days when I get so frustrated and he takes the brunt of it,” Monfredo says. “But Scott never makes me feel like a burden, even when I feel like I am one.”
That could be the key to their relationship success, even as they must sleep in separate beds and often cancel social plans. “I try my best not to treat her as handicapped,” Rickards says. “She’s a normal person who has good days and bad days. We try to focus on what we can do, not what we can’t.”
Dan and Jennifer Digmann
It gets more complex when both partners have MS. Dan has the relapsing-remitting kind (RRMS), which means his symptoms come and go. Jennifer now has secondary progressive MS and was already in a wheelchair when they met in 2002. The couple got married anyway and have been together for 14 years. They are a model of love and respect.
“A lot of stuff I do to help her I would do anyway because chivalry isn’t dead,” says Dan, 46. “Because I love her, and as her husband—in sickness and in health—you hold true to those words.”
One of their secrets to success is patience. “I have to not fly off the handle when I’m frustrated with the disease,” says Jennifer, 44, who has recently been having trouble feeding herself. “If he has to help me, it’s easier for him not to also have to manage Meltdown Jennifer.” When they first got married Jennifer was able to be more helpful with preparing food and doing laundry; now she doesn’t feel as strong and needs more assistance.
“For both of us, patience is critical,” Dan adds. “We have this agreement—I won’t step in and help unless she asks. But I see her struggle and the natural thing to want to do is make things all better.” When she gets frustrated, that’s when he has to be even stronger. “I need to give her space to have a meltdown,” he says. “She in turn gives me space when I have my little meltdowns. It’s easy to label these as MS meltdowns, but there are things any married couple deals with—MS just puts it at the forefront.”
For Jennifer, one of the biggest challenges is being mindful of Dan’s limitations. “When I’m having difficulty and relying on Dan, I have to remember that he has the disease as well,” she says. “If I know Dan is tired but I need help, that can be challenging.”
For Dan, it’s not being able to fix her symptoms. “I can turn a blind eye to it and hope tomorrow will be better, but I know that it’s not always going to be better tomorrow,” he says. Still, he’s surprised that they’re doing as much and as well as they are, and he’s grateful for every moment they spend together. Even the challenges pull them closer.
Like during their first fight. Jennifer remembers: “I sat there thinking, ‘I need his help to use the bathroom and he’s not going to help me,’ but he said, ‘We may be in a tiff right now but I’m your husband and I’m always going to be here for you.’ When he wrapped his arms around me to lift me up, I knew this was the person I needed to be with.”
Mona Sen and David Krchelich
Mona Sen of Schenevus, NY, had relapsing-remitting MS for 26 years before it advanced to secondary progressive in 2012. “I was walking, I was fine, and then—boom,” says Sen, 53, who now uses a walker or motorized scooter and suffers from leg spasticity and vision problems. She admits that the limitations have affected her relationship with her partner of over two decades, David Krchelich, now 69.
“It’s changed things. It’s still very loving but in a completely different way,” she says. On one hand, Krchelich will come home from a 10-hour workday only to shop, cook dinner, and take care of her, she explains, all things she did herself before SPMS. On the other, he’ll go to events without her when it’s too challenging for her to join, and she’s got mixed feelings about it. “It’s been so many years of this now that my psyche has evolved along with it,” she says. “Of course, it feels bad—it feels horrible, but I have to not waste my energy fretting. I need to be pragmatic.”
Intimacy hasn’t really been part of the relationship for years. “We just kind of woke up one day and said, ‘I don’t feel like having sex, do you?’ And that sort of ended that,” Sen says. But age has also likely played a role. “The libido is just out the window at this point,” Sen adds. It doesn’t help that her leg spasticity often wakes them both at night, so neither one is getting a good night’s sleep.
But there’s a beautiful understanding happening here, too. “David tries hard to not make a point of my disabilities,” Sen says. “I think he sees my qualities and feels bad that I’m the way I am, so he tries to nurture some of those things for me. He’ll make suggestions, like why don’t you try this or that?” Sen says. “He’s very caring.”
For her part, Sen tries to keep in mind that everything isn’t about her. “There is somebody else who’s part of this whole partnership,” she says. “You try not to focus solely on yourself because you don’t want unnecessary tension that will cause aggravation and maybe even trigger symptoms.” Sen attends a support group so she has a place to vent. “At home, you try not to dwell on yourself. You have to keep in mind that this other person needs you too.”