When MS Enters Relationships: The Care Partner Perspective

When a family member or spouse is diagnosed with MS, everyone’s lives change in unexpected ways. For the MS care partner, this often comes with sacrifices.

When MS Enters Relationships: The Care Partner Perspective

When a loved one is diagnosed with MS, everyone’s lives change in unexpected ways. For the MS care partner, these are choices and, often, sacrifices.
Medically Reviewed

W hen a spouse or life partner is diagnosed with multiple sclerosis (MS), the condition can take on the role of a third party in the relationship. MS is an unpredictable disease that affects everybody differently. Often, symptoms can change with little to no warning — debilitating one day, nearly non-existent the next.

This can have a lasting impact on a person living with MS, as well as the person closest to them.

How MS Shifts Relationship Dynamics

“Every relationship is a care partnership, where you take care of and respect and honor each other,” explains Rosalind Kalb, PhD, a psychologist and senior programs consultant for Can Do Multiple Sclerosis who has specialized in MS care, support, and education for over 30 years. “When MS is first diagnosed, that may continue unchanged. But as the person with MS develops more hands-on needs, you see a real shift in the dynamics of the relationship.”

In many cases, the MS care partner may need to help their loved one do the things they used to be able to do independently, such as:

  • Shopping
  • Preparing meals
  • Staying on top of household chores
  • Bathing
  • Grooming
  • Getting dressed
  • Using the toilet
  • Getting in and out of bed
  • Walking
  • Using technology
  • Paying bills
  • Driving or using public transportation
  • Coordinating doctor’s visits
  • Administering medications

It’s common for the care partner to make sacrifices to help their loved one with MS. For example, says Kalb, if a person with MS can no longer be the primary breadwinner, their partner may need to work multiple jobs.

“This can contribute to guilt and resentment on both sides,” notes Kalb. “The care partner is left feeling overwhelmed, exhausted, and drained. The person with MS feels like they’ve lost a piece of themselves and they’re not a good partner.”

Communication: The Foundation of an MS Partnership

According to the National Multiple Sclerosis Society, poor communication can lead to unnecessary stress on a care partner.

Support partners are always feeling as though they’re playing a guessing game.
— Rosalind Kalb, PhD

“Couples who already have a caring relationship with good communication, problem-solving, and coping skills are the ones who will say that MS has brought them even closer,” says Kalb. “Where couples run into trouble is when they don’t have that foundation.”

That’s why one of the best things you can do is develop and foster two-way communication with your partner. Not only is it important for you and your loved one with MS to be able to talk openly and honestly about anything — from fears and concerns to long-term plans and goals — but this also needs to be an ongoing process.

“MS changes day-to-day, month to month, and year to year,” Kalb emphasizes. And because many MS symptoms, such as fatigue and neuropathic pain, may not be obvious to others, “Support partners are always feeling as though they’re playing a guessing game.”

Without solid communication, it can feel like the person living with MS is sending mixed signals. “On their good days, they don’t want to be treated like a ‘sick’ person,” says Kalb. “But on their bad days, they want everyone to know it’s a bad day, and they want help.”

Talking openly with your loved one can go a long way. “Say, ‘I love you, but I can't read your mind or your body, so you need to tell me when you need help and what kinds of help you need. And you need to tell me when you’re doing okay and want to go it on your own,’” she recommends.

Implementing certain tools can help facilitate this type of communication without asking, “How are you?” all the time, notes Kalb. For example, she recommends using a red light/green light sticker system to help the person with MS communicate whether it’s a good day or a bad day without having to discuss it.


How Mobility Aids Help Everyone

According to the National Multiple Sclerosis Society, having different perspectives on an MS-related issue, such as the need for home adaptations, mobility aids, or hired help, has the potential to drive a wedge between a partner and their loved one with MS.

With a walker or a motorized scooter, you can do more things together.
— Rosalind Kalb, PhD

For example, “Support partners are often fearful for their loved one’s safety if they have balance problems or difficulty walking,” says Kalb. “They’re always on edge, wondering if their loved one is going to fall.”

Yet, a person with MS may be reluctant to make changes to their routine or use a mobility aid, because they don’t want to admit they need one or feel disabled, she says.

As a result, the support partner often becomes the default mobility aid, says Kalb. “The person with MS may hang or lean on their partner when taking a walk or going to the store together. So, in a sense, they become attached at the hip, which is exhausting for the support partner.”

Reframing how you talk about mobility aids can help. Let them know that “With a walker or a motorized scooter, you can do more things together, like go to museums, zoos, or the mall,” says Kalb.

Asking for Help Is a Strength, Not a Weakness

"Care partners need to recognize how challenging it is to make it all work," says Kalb, "but they don't have to do it alone. Getting help, whether by signing up for coaching or talking to a family therapist, is an important positive step to take."

3 Sources of MS Help

These resources provide both practical and emotional support.

  1. The National Multiple Sclerosis Society: They’ve put together an extensive list of support resources for care partners, information on respite care, and step-by-step guidance for hiring in-home help.
  2. Can Do Multiple Sclerosis: This organization offers coaching programs to help MS caregivers navigate the unique challenges they face on a daily basis and connect with other care partners who are in the same boat.
  3. American Psychological Association: Their Psychologist Locator tool can help connect you with a local therapist to talk through your problems and find possible solutions.