When MS is the third wheel
Sometimes, ‘in sickness and in health’ gets real.
by Elise Oberliesen
It’s not for nothing that Shakespeare wrote about the many challenges true love can and, most of the time, will face. No matter what a couple’s circumstances, at some point, life will throw a curve that will make them stop, consider, reassess—and often, go forward even stronger. Multiple sclerosis can certainly be one of those life-changing events, especially when symptoms flare, giving new and deeper meaning to the phrase, “in sickness and in health.”
A 2013 report from the American Psychological Association suggests the divorce rate hovers around 40 to 50 percent in the general population. And this doesn’t include the many couples who built a relationship without officially declaring it. Another study, co-authored by researchers from the University of Michigan and Indiana University-Purdue University, in 2014, looked at how illnesses like stroke, cancer, heart and lung disease influence a married couple’s outcome, and found that of the 2,717 marriages studied, 31 percent of them ended in divorce.
While there aren’t any studies specifically on MS and divorce, it’s easy to see how a disease like MS could challenge even the strongest partnerships. MS often creates shifts in household and parenting responsibilities, and increases financial strain, says Carolyn Roberts, PhD, a licensed marriage and family therapist in Los Angeles, who was diagnosed with MS in 1976.
“Having MS is an expensive disease, with doctor’s visits, medications and maybe even alternative therapies, like yoga and massage,” Dr. Roberts explains. In addition, if the person with MS can no longer work due to physical or cognitive changes, the shifting roles and financial stress could add marital strain.
Julie Hare, from Napa, California, who was diagnosed in 2009, says she makes it a point to remember that the disease not only affects her personally, but also can stress her husband and the marriage itself.
By 2014 Julie’s MS had progressed significantly, with pain a near-constant companion. “I was having full body spasms,” she says. “If my husband, Steve, tried to transfer me to the commode, my legs would curl up into a tight spasm, making it almost impossible for him to help me,” she says. Steve’s feelings of helplessness, combined with her pain, took its toll on the partnership for a while, Julie says.
How couples cope
Julie and Steve strengthened their relationship through an education series offered by Can Do MS, a nonprofit organization focused on wellness education for people living with MS, and which often collaborates with the National MS Society. The workshops helped Julie and Steve figure out how to maintain their relationship in a healthy, intimate way—separating the caregiving activities from their other time as a couple. While they can no longer walk barefoot together on the beach, Julie says, they now love snuggling on the couch to watch a movie, and showering together.
Julie says the workshops also helped them develop better coping strategies related to MS. “They teach you to make MS smaller by making other things bigger,” she says.
As a result of their commitment to each other, the Hares will celebrate 33 years of marriage in July.
Myra and Steve Lezanic, of Omaha, Nebraska, who have been married for 34 years, can relate. Myra was diagnosed with MS in 1982; now, because of spasticity in her fingers, Steve buttons her shirts and ties her shoes. Sometimes bouts of fatigue interfere with her daily activities—like housework, grocery shopping and meal preparation. That leaves a tall list of honey-dos for Steve.
But Myra knows it’s important that the relationship not feel lopsided. So she takes care of grocery shopping and cooking—tasks she can usually complete. And when she’s feeling well, she surprises Steve with freshly baked pies—that’s one way she shows her love and care for him. And when the aroma of a homemade peach pie hits him when he walks in the door, the smile on his face is invaluable, Myra says.
Steve and Myra also attribute the strength of their marriage to patience and adaptability. If a weekend outing of shopping, getting a bite to eat and hitting the latest movie is too fatiguing for Myra, then it’s important to recognize her limits, says Steve. That means “being willing to change plans at the drop of a hat,” he adds.
“Sometimes Myra can’t finish preparing dinner, but there’s no question that it’s just part of the partnership that we’re in. We carry each other when we need to.”
Perspective and personal time
Strong communication helps keep partnerships strong in the face of MS’s demands. The Hares talk often, and Steve reminds Julie that this disease is not her fault. Likewise, Steve Lezanic lets Myra know it’s OK to ask for help when she needs it.
The Hares also practice gratitude on a daily basis—by recognizing what they have in life rather than what’s missing. Julie says feeling grateful has helped their relationship immeasurably because now they have more positive ways of seeing the world and expressing themselves in it.
Giving each other space, or even some distance, has helped Myra and Steve keep balance in their relationship. Steve recently wanted to go on a weekend getaway with the guys. But the guilt he felt leaving Myra behind gave him pause about making plans. Myra knew the break would do Steve a world of good, so she gave him a genuine thumbs-up to go.
“She kept encouraging me, so it calmed me down so I could say ‘yes’ to the guys,” says Steve. “It feels good to be needed, but it’s also good that she can carry on without me.”
Thinking about marriage counseling?
Every couple living with MS will hit some rough spots—especially if one person experiences chronic pain or fatigue, or generally feels lousy most of the time. But if tempers flare regularly, communication drops or intimacy ices over, those could be signs of marital strain.
Could couples therapy help? A 2011 study published in the Journal of Marital and Family Therapy reported that about 70 percent of couples in the general population may benefit from marital therapy. With an evidenced-based treatment, such as emotion-focused therapy, couples can expect to delve deeply into emotions like fear, anxiety, shame and joy—and learn how to handle them constructively, according to Leslie S. Greenberg, PhD, author of Emotion-Focused Couples Therapy: The Dynamics of Emotion, Love, and Power (American Psychological Association, 2008).
In addition, counseling is often focused on helping the couple find ways to maintain balance so that each person continues to give and receive in the relationship.
Dr. Roberts says one of the factors that helps couples benefit from counseling is figuring out how to problem- solve together, rather than viewing MS or any of its symptoms as a personal defect in their partners.
Roberts says it helps when “each individual is able to reflect on themselves and take responsibility for their part in the conflict.” That can help end the finger pointing or blaming, and reframe the problems as something to be addressed together.
Learning this kind of collaborative problem solving through counseling can go a long way, says Dr. Roberts. “It’s a way to nurture your relationship.”