We often imagine that connection and support should happen naturally — that the people who care about us will instinctively know what to say, what to offer, and when to step in. But the truth is more complicated. Meaningful connection rarely happens without intention. It takes initiative. It takes communication. And sometimes, it takes courage.
It can be easy to assume that if someone isn’t directly offering help, they must not want to give it. You may hesitate to ask because you don’t want to be a burden or force something that doesn’t feel freely given. At the same time, many well-intentioned people in your life genuinely want to help. Some are simply unsure how. Others are waiting for a cue. And many are navigating their own lives and don’t realize that what feels obvious to you remains invisible to them.
Support partners can be one of the strongest sources of connection in your life with MS. And they’re not limited to the people you live with. They may be friends, siblings, parents, adult children, coworkers, neighbors, or members of your broader community.
Isolation is Contagious
Isolation in MS often develops quietly. A person living with MS may pull back to avoid burdening others or to conserve limited energy. A support partner may step back out of fear of saying the wrong thing or overstepping.
It’s not uncommon to hear:
- “I didn’t want to ask for help.”
- “I didn’t know if I was allowed to offer.”
Both statements are rooted in care. Both are rooted in uncertainty. And both can unintentionally widen the distance between people who genuinely want to stay close
MS Changes Things… And it Doesn’t
Justine and Heidi have always been close. When Heidi got diagnosed with MS, Justine knew that she wanted to support her, but she wanted to be thoughtful about it. “When Heidi was diagnosed with MS, I had no clue what to do,” said Justine. “But my instincts were to run into the burning building, rather than run away from it, since she was having to run into it herself. If I had to run into a burning building, I’d feel better with someone there, instead of being alone. Thus, into the building we go.”
“I think that too many of us, out of fear or confusion or lack of understanding, shy away from scary things,” says Justine. “But I don’t think that’s helpful for the person walking the path with MS. I think speaking directly, addressing the situation, calling it what it is, and not something it’s not, AND not sugar coating is important. The key is to be empathetic… listen, be curious, try to understand even though you never will…and then call it like it is. I think that when things are called as they are and not avoided, the person with MS perhaps feels a degree of validation.”
“As a support friend for Heidi, I want to know what to be aware of that she may not be if she is experiencing MS symptoms,” said Justine. “I want her to be safe, and I want to help, and if I understand enough to recognize the out of the ordinary when she may not, I think that can be helpful. So that is what I do.”
Communication is Key
Communication is key when it comes to maintaining supportive relationships. Thoughtful support can help a person living with MS manage practical challenges. At the same time, it allows support partners to feel useful, included, and emotionally engaged. Many people want to help not out of obligation, but because helping is one of the ways they express love and maintain closeness.
It can be helpful to reframe support as collaboration rather than burden. You aren’t “imposing” when you ask for what you need. You’re inviting someone into your experience.
Valerie noticed that sometimes her mother’s fatigue and other MS symptoms make it more difficult for her to do things around the house. She says “There are things that we do without thinking, but it takes my mom more time, due to her MS. And when you start noticing those simple things, you begin helping her lift boxes, move things, or just help with things around the house. Supporting my mom with these things has impacted our relationship in the sense that I’ve felt a closer connection with her.”
Without direction, even the most caring friend or family member can freeze. A general statement like, “I’ve been having a hard time,” may leave someone unsure how to respond. A specific request such as, “Could you drive me to physical therapy on Tuesdays?” gives them a clear way to step in.
It’s also important to recognize that support does not always mean fixing. Sometimes what you need most is to be heard. Letting someone know early in the conversation, “I don’t need solutions right now. I just need you to listen,” can relieve pressure on both sides and create space for meaningful connection.
Connection as a Skill
There will be times when maintaining connection feels hard. There will be moments when someone says the wrong thing, misreads a situation, or reacts imperfectly. This is part of being human.
Connection is a skill that can be practiced. Recognizing good intentions, reflecting before reacting, offering each other grace, and trying again are all part of strengthening this skill. Over time, you can learn what works best for your relationship.
Some practical strategies include:
- Be specific in your requests. “Can you help with dinner on Thursdays?” is clearer than “I’m exhausted lately.”
- Clarify the kind of support you want. Listening, brainstorming, distraction, or hands-on help?
- Build empathy by sharing what your day-to-day experience actually feels like.
- Set boundaries that preserve autonomy and respect. For example: “I’d like you to check in once a day. Trust that I will ask if I need more.” Or “When I need help, the best way to offer it is ___.” Clear boundaries strengthen connection by reducing resentment and misunderstanding.
- Have honest conversations about what the capacity levels are on both sides of the relationship, and give each other permission to redefine what “showing up” looks like.
Remember, there’s not one right way to ask for or give support. Everyone is different and every relationship is different and it’s ok to get creative about what works for you.
MS-Related Support
One powerful way to deepen connection and improve support is to learn about MS together.
This may mean attending educational programs together, inviting someone to a medical appointment, or talking openly about medication decisions, symptoms, and side effects. When support partners understand the realities of MS, they often feel more confident and capable in their ability to support you. They can help share insights and connect dots that you don’t see when they understand more fully.
In the study Family Members’ Experiences Supporting Adults with Chronic Illness: A National Survey, published in Families, Systems and Health, 41 percent of respondents reported that they did not feel they knew enough about their loved one’s condition or treatment regimen to provide the help they wanted to give. Education can close that gap.
If there’s someone you would like to deepen your connection with, consider sharing trusted resources or inviting them to attend a program such as the MS Center’s MS 101 class.
Watching the same program can give you both similar background knowledge and language to talk about your experience. It opens a path to conversations that may have felt hard or impossible otherwise. Learning together can reduce uncertainty and strengthen your relationship.
It’s Not All MS-Related
At the same time, connection does not have to revolve around MS. Some of the most restorative support comes from shared interests that have nothing to do with symptoms or appointments. Watching a favorite show together. Gardening. Creating art. Playing cards. Cooking. Talking about anything other than health.
Engaging in hobbies or simple rituals reinforces your identity beyond your diagnosis. It reminds both people that your relationship is bigger than MS. See “Finding Purpose Through Connection” for more ideas on how to build connection both around and away from MS.
Connection is Something We Build
Strong relationships do not always happen automatically. They require intention, clarity, and a willingness to begin again when things feel awkward or uncertain.
If you are feeling isolated, consider one small step. Name one need. Invite one person into one part of your experience. Connection does not have to be dramatic to be meaningful.
Support is connection in action.
