Support on your terms: How to include loved ones in your MS care

Including loved ones in your multiple sclerosis (MS) care can be a fine balance. You may want or need their help at certain times or with certain tasks, but not others. Or perhaps you’re worried they may say no or find your requests burdensome.

The reality is that your loved ones likely do want to help you, but they may not be sure how or may be afraid of overstepping. With these actionable tips, you can gain their support, preserve healthy boundaries, and keep your autonomy at the forefront when building your MS support network.

Balancing independence and accepting help

Depending on the type of MS you have, you may find that you have periods of remission where you don’t need to rely much on friends and family. However, you may find that you need more support as time goes on and your MS progresses.

Either way, as your condition evolves, it’s likely your needs will change — and that’s OK. While it can feel like allowing a loved one to help you with daily tasks is a loss of freedom, try shifting your perspective. You only have so much energy to expend in a day, so the more help you receive, the more you can focus on doing things you enjoy.

For example, allowing a friend to pick up your medications from the pharmacy might mean you have more energy to spend quality time with them later.

Setting healthy boundaries

While family support for your MS can be an incredible gift, even well-meaning loved ones may at times overstep. This often comes from a place of caring, but it can still be frustrating.

One way you can start to set boundaries around your chronic illness is to assure your loved ones that you will ask for what you need, when you need it. Taking the guesswork out of the equation may mean they’re less likely to overstep.

Still, if you do find that you end up receiving more than what you asked for, it can be helpful to gently remind your loved one that sometimes less is more.

For example, let’s say you asked your sister to pick up groceries for you. She does what you asked, but she also puts everything away and starts to cook dinner. She may only be trying to help, but you may feel like your independence isn’t being preserved.

Emphasize that, while you appreciate the thought and effort, you’d prefer to handle some tasks yourself. You could say something like, “Thank you so much for picking up my groceries. I really appreciated that you did that for me so I didn’t need to sit in the car or carry the bags inside. But I had planned to make a quick Crock-Pot meal tonight, so I don’t need help cooking. I’d love to have you stay for dinner if you’re up for it.”

You know your body best

Sometimes, including loved ones in MS care can give them the impression that they have free rein to comment on all aspects of your condition. This, too, may come from a well-meaning place, but you can assert your boundaries by letting them know what you do and don’t want help with.

For example, perhaps you asked your friend to pick up your medication, and now they’re offering opinions on other medications you could try. You could say something like, “I can see that you’ve been doing some research on MS, and I appreciate that you’re interested in helping me. My doctor and I have a good handle on my treatment at the moment, so I don’t need help researching other options. But I could use your help with a couple other tasks this week. Would you be up for that?”

Communicating specific daily needs

As you build your MS support network, you may find that your loved ones are willing to help you, but they aren’t sure where to start. You can address this by making specific requests.

Start by brainstorming a few ways you could use help this week. Be as specific as possible by requesting help with:

• folding and putting away laundry
• picking up medications from the pharmacy on Friday
• cooking two freezer meals

Take these requests to the friends or family members who’ve offered to help you. They will likely be glad to have a little direction.

You may also find it useful to enlist a close friend or family member to help advocate for you when you’re feeling pain or fatigue around others you don’t know as well.

For example, you could create a code word or phrase to use with your spouse or partner when you’re out in public. When you use this phrase, they understand that you’re in pain or your energy is waning, and you need to remove yourself from the situation. It can take some pressure off of you to let them take the lead so you can focus on feeling better.

Finally, remember that your loved ones can’t guess what you’re thinking, but they can respond to specific requests. Being upfront about your needs can help avoid resentment on both sides later. And try not to go into your request assuming you’ll get a “no.” You may find that what seems like a big task to you seems smaller to your loved one.

For example, you could say something like, “I’m planning out my week and want to protect my energy so I can enjoy our family dinner on Friday. Would you mind picking up my refills from the pharmacy tomorrow afternoon? That would be a huge help to me.”

Practical ways loved ones can help

Here are some ideas for ways tasks you can ask for family help with:

• scheduling appointments
• sorting through medical bills
• doing household tasks, like laundry or cleaning
• cooking or meal prepping
• babysitting or caring for pets
• lending an ear when you need to vent
• attending appointments with you

Keeping your voice at center of your MS care team

If you ask a friend or family member to come to appointments with you, be sure to set expectations up front. Let your loved one know how they can help you during your visit, as well as anything you’d prefer they not do.

For example, you could say something like, “I’m having some brain fog today, so I might ask you for help explaining my recent symptoms to my doctor. However, I’d like the opportunity to do it on my own first. I’ll let you know if I need you to chime in.”

Consider providing your loved one with a heads-up on what would be helpful if your doctor or nurse talks around you rather than to you. They can help advocate for you by redirecting questions to you.

Essential next steps for patients

Here are some things you can do this week:

• Pick two tasks to outsource. These can be one-time asks or small weekly chores.
• Save the conversation starters from this article. Copy the suggestions for communicating with loved ones into the notes app on your phone. That way, you’ll have them for reference if needed.
• Chat with your support network. Schedule 10 minutes to talk with the main person or people who help you manage your MS day to day. Take this time to work on your MS care partner communication, and make sure you’re aligned on how you’d like them to help you moving forward.

Following these simple steps can help you as you work toward including loved ones in your MS care.

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Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.