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Life With MS: The Unseen Issues Couples Face On Their Journey

Photo credit: Getty Images/Tom Merton

When a partner is diagnosed with multiple sclerosis (MS), a once-perfect relationship can suddenly be challenged by a new world of stress and uncertainty.

“There are many stressors that might come up when one partner has MS,” says Michael Pappano, MSW, LCSW, social worker at the Penn Comprehensive MS Center. “But I think a lot of relationship strain has to do with people feeling so uneasy because of the unpredictable nature of MS.”

No one knows what’s going to happen the next day, week, or month, he explains. “And dealing with this constant stress is a lot. It’s a lot for an individual and a lot for a couple.”

Knowing what types of stressors might arise can prepare you and your partner to face them head-on. These are some of the most common stressors a couple might face if their loved one has multiple sclerosis.

Financial worries

MS is typically diagnosed between the ages of 20 and 40, prime years for employment and income for most people. It’s also a common age when you might begin to raise a family together. When one partner is diagnosed with MS, it can seem like the entire family’s financial future becomes uncertain.

“Think about a working mom with MS for example,” says Pappano. “She works as hard as she can until she’s 35, but then she has to exit the workforce because her MS is taking a toll on her physically.”

Financial matters can cause a significant strain in relationships.

“They now have one income to support themselves and their children,” says Pappano. “They have concerns about finances that are making the relationship between her and her husband difficult.”

It’s important to acknowledge and address these issues, rather than ignore them and let them develop into sources of further stress—and possibly even resentment.

Physical issues

“MS can literally knock people off their feet because of nerve and muscle impairment and spasticity—tightness and stiffness in their muscles,” says Pappano. This can make certain parts of childcare more strenuous for a parent.

The person who doesn’t have MS might need to take on more of the physical aspects of parenting, which can be stressful in a partnership.

MS can also make physical intimacy more challenging for men and women, says Pappano.

In some cases, a partner might start to feel unwanted or unworthy,” he says. “They might be reluctant to have sex, which can make their significant other feel pushed away.”

It’s important to talk with your physician if you’re experiencing intimacy issues like this to see if certain medications or therapy may help.

Pappano also suggests having regular, open communication with your partner as a key way to regain normalcy in your personal relationship.

Caregiver stress

Sometimes, one partner in the relationship will naturally assume the role of caregiver. While helpful, this may also put a strain on your relationship.

“I might suggest that the partner who is doing the caregiving look around for grants to help with the cost of care for his partner,” says Pappano. “For instance, the National Multiple Sclerosis Society offers financial support for in-home care for people living with MS.”

He adds that even just enlisting the help of a support system—family, friends, and neighbors—can give the caregiver a chance to take a short break, re-energize, and return to their partner feeling renewed and ready to face life with MS together.

Pre-existing issues

“MS, like any other major change in a person’s life, can really bring to the surface tensions that may have existed prior to the diagnosis,” says Pappano. That’s particularly true when partners are spending more time together.

Counseling and connecting with other people who have MS—like support groups for partners of people with MS—can be a great resource for couples who are struggling with this. “It’s important to reach out to others,” he says. “It can help to understand that other people are going through the same things, and help is available.”

To learn more about the Penn MS Center, download an MS checklist or to make an appointment, please visit PennMedicine.org/MS