MS care partnerships: Honesty, balance, and support

Living with multiple sclerosis (MS) can be tough, not just for the person living with MS, but also for those who care for them—whether you’re a spouse, family member, or friend. You play a critical role in their well-being, and there are several things you can do to help the person you care for live well with MS and to help you live well as a care partner.

1. Recognize the signs

Multiple sclerosis can present itself in many different ways, and the most disruptive symptoms can vary from person to person. For many, it’s not necessarily only the physical symptoms that cause the greatest challenges but also the "invisible" symptoms, which can be harder to see day-to-day. When someone with MS is experiencing more cognitive challenges or debilitating fatigue, it could be a sign of disability progression. This may present as:

Living with multiple sclerosis (MS) can be tough, not just for the person living with MS, but also for those who care for them—whether you’re a spouse, family member, or friend. You play a critical role in their well-being, and there are several things you can do to help the person you care for live well with MS and to help you live well as a care partner.

1. Recognize the signs

Multiple sclerosis can present itself in many different ways, and the most disruptive symptoms can vary from person to person. For many, it’s not necessarily only the physical symptoms that cause the greatest challenges but also the "invisible" symptoms, which can be harder to see day-to-day. When someone with MS is experiencing more cognitive challenges or debilitating fatigue, it could be a sign of disability progression. This may present as:

• Struggling to find the right words
• Difficulty remembering appointments
• Lacking the energy to do usual activities

See a few more ways disability progression can affect normal, everyday activities here.

Sometimes, you may notice changes in someone with MS before they do. It's important to share observations gently to help them see a clearer picture of what is going on with their MS so they can address it with their healthcare provider. Be sure to continue talking to them about any changes you may see.

2. Honesty is key

It’s normal to be mindful about the right way to bring up your concerns, but talking openly and honestly is essential so you can both act on them sooner. Here are some tips:

• Set up a quiet time to talk—perhaps during a walk or at a coffee shop where you can have an uninterrupted conversation
• Be clear and realistic, and remember, some topics may take time to process
• Focus on one thing at a time to avoid overwhelming them
• Limit distractions to help them concentrate, and keep the discussion focused on what's most important

Remember: Not every conversation will have an immediate solution, but being open and honest helps you both navigate changes together.

When your person living with MS is ready to discuss these concerns with their healthcare provider, you can help by making sure they feel supported. Learn more about their experience, take notes, or help them explain if they're having trouble putting their challenges into words. Remember that the appointment is about them, so only help out if they ask for it—it's important to respect their autonomy.

3. Finding balance

Caring for someone with MS can be demanding, and it’s natural to feel overwhelmed at times. But it’s important to take care of yourself, too. When you do, you’ll be in a better position to support your loved one. Here are a few ways to maintain balance:

• Continue to meet with friends and keep in touch with loved ones
• Keep up with your hobbies and interests
• Make time for physical activity, such as long walks or exercise, to relieve stress
• Join a support group to connect with others who understand your experience

Remember: You are not alone. Being a care partner is a big responsibility, but the role you play is invaluable, and your support can make a world of difference.