A recent conversation with a woman living with MS illuminated some of the complexities of social connection. Reflecting on her medical appointments, school pick-ups, and the countless small and large decisions that shape daily life, she shared this reflection:
“There are certain days that living with MS makes my world feel pretty small. Fatigue and degrees of uncertainty sometimes turn simple plans into hard decisions, and explaining my symptoms can feel like more effort than it’s worth.”
Her story is just one of many that illustrate how difficult it can be to balance daily demands, navigate fluctuating MS symptoms, and stay meaningfully connected to others. And yet, connection matters deeply. Public health leaders increasingly recognize social connection as a powerful determinant of health, and equally important as many traditional health behaviors.
In 2023, the U.S. Surgeon General described loneliness and social disconnection as a national epidemic, with roughly half of U.S. adults reporting meaningful disconnection at times. And according to the World Health Organization, loneliness and isolation are also widespread globally, affecting up to one in three older adults and one in four adolescents.
For people living with MS, this landscape is particularly complex. MS heightens the need for support and understanding while at the same time creating barriers to accessing it.
In this issue of InforMS, we explore how social connection can be both a lifeline and difficult to sustain, and how understanding why it matters so much is an important first step in making social connection a priority.
What Do We Mean by Social Connection?
According to the World Health Organization, “social connection” refers to how people relate and interact with others, while loneliness is the distress that comes from lacking desired connections.
Social connection includes the size, quality, and diversity of our relationships and the degree to which we feel supported and cared for. It can involve family, friends, neighbors, coworkers, peer groups, or community activities. At its core, it is about feeling that we belong and that others have our back.
It helps to clearly distinguish these related but different concepts:
- Social isolation describes a situation of having few contacts or opportunities to interact.
- Loneliness is the distress that comes from having less connection than one wants.
- Being alone can be restful and intentional, and isn’t the same as loneliness.
A person can be socially isolated without feeling lonely, and someone surrounded by others can still feel profoundly lonely. Research and practical guidance alike emphasize that quality matters more than quantity. Guidance from Mental Health America similarly stresses that meaningful, supportive relationships that foster a sense of belonging matter more for well-being than simply having many contacts.
Connection also looks different across the MS community. Culture, personality, geography, disability status, and life stage all shape how people engage. Some find strength in groups; others in quiet one-to-one conversations. Many need regular time alone to rest and manage symptoms. Healthy connection isn’t constant interaction; it’s feeling seen, believed, welcomed, and supported.
It’s also important to say this plainly: everyone experiences loneliness at times and sometimes over long durations. A diagnosis like MS can intensify it, but loneliness isn’t a personal failure, a social skill deficit, or a sign that someone has done relationships “wrong.” It’s a human signal that our needs have shifted or that our lives have changed.
And rest assured, connection doesn’t have to begin with a deep or lifelong relationship. It often starts small. A familiar exchange with the same grocery store clerk. A short text that simply says, “thinking of you.” A neighbor who waves and asks how your week is going. Even infrequent contact can sustain meaningful relationships; many friendships move through seasons where communication is sparse but still steady underneath.
Connection grows over time. It’s built through repeated, ordinary interactions — little moments of recognition, kindness, and mutual presence — not only through big gatherings or constant communication.
How Connection Shapes Health, Stress, and Resilience
A growing body of research shows that social connection isn’t just emotionally meaningful; it has measurable biological effects. According to the Centers for Disease Control and Prevention (CDC), strong social ties help protect both mental and physical health, lowering risks for heart disease, stroke, dementia, depression, and anxiety, while supporting better stress management, healthier eating and physical activity, and improved sleep.
Large meta-analyses summarized in peer-reviewed lifestyle medicine research have found that strong social relationships are associated with a 50% increase of survival over time, making connection one of the strongest predictors of longevity. That same research suggests that chronic social disconnection carries health risks greater than those associated with physical inactivity, and roughly twice those associated with obesity.
Research highlighted by the Harvard T.H. Chan School of Public Health links loneliness with increased risks of heart disease, stroke, dementia, anxiety, and depression. And, according to a recent World Health Organization report, loneliness is also associated with at least double the risk of depression, and is linked to higher risks of stroke, heart disease, diabetes, cognitive decline, and anxiety.
Clinical and public health summaries, including those from health systems such as Atlantic Health, show that positive, supportive relationships are associated with lower blood pressure, reduced inflammation, healthier stress hormone patterns, and stronger immune responses. Additional research has linked strong social connectedness with better immune function, faster recovery from illness, and substantially increased chances of longevity.
Brain health research reinforces this connection. Chronic stress, depression, and inactivity are linked to faster cognitive decline, while physical activity, cognitive engagement, and meaningful social participation support neurological resilience. Social connection often enables these protective behaviors which make social connection not just supportive, but also part of preserving brain health.
For people living with MS, these findings are especially relevant. Stress and inflammation can worsen fatigue, pain, and cognitive symptoms. Supportive relationships that calm the stress response may indirectly ease symptom burden and strengthen day-to-day resilience.
Harvard public health researchers highlighted evidence that social behavior such as volunteering and helping others is associated with better cognitive and physical health, particularly in older adults.
Why Social Connection is Especially Complex in MS
MS doesn’t only affect mobility or physical health. It also disrupts predictability and the ability to know how you will feel later today, tomorrow, or next week. Many forms of social life depend on predictability: committing to plans, arriving on time, maintaining energy through a visit, or responding consistently. When predictability becomes unreliable, connection can begin to feel risky rather than comforting.
For people living with MS, staying socially connected can be more complicated than it may appear from the outside. These challenges are not a reflection of effort, motivation, or resilience; they are real barriers shaped by symptoms, circumstances, and systems.
Many MS symptoms are invisible, including fatigue, cognitive changes, and pain. This can lead to misunderstandings or comments like “you look fine” or “you don’t look sick,” which may leave people feeling dismissed or misunderstood. Over time, the ongoing work of interpreting symptoms for others — explaining fatigue, cognitive changes, or why plans change — can become its own form of labor. Many people begin to conserve energy by saying less, declining invitations, or avoiding situations where they must justify their limitations.
MS also carries layers of real and impactful loss. Cancelled plans, changing abilities, and shifting roles within friendships and families can bring grief for the spontaneity, independence, or sense of identity that once felt more stable. Even when support is present, these changes can make it harder to stay engaged in the same ways as before.
Access barriers further complicate connection. Mobility challenges, transportation limitations, language barriers, and financial strain can restrict participation in social or community activities. For individuals living in rural or underserved areas, geographic distance and limited local resources may increase isolation. At the same time, digital tools that can help bridge gaps are not always accessible due to technology costs, internet availability, or comfort with online platforms.
There are also emotional barriers that are often harder to see. Many people with MS worry about being a burden or feel pressure to protect others from their struggles. Some may withdraw as a form of self-protection, while depression or anxiety can reduce the energy or motivation needed to reach out, even when connection is deeply wanted.
These experiences are very common. They aren’t personal failures, and they don’t mean connection is impossible. Recognizing these realities is an important first step toward creating more compassionate, flexible, and inclusive ways to stay connected.
The Role of Meaningful Relationships in MS Well-Being
It’s not the number of relationships that matters most, but the quality of connection. Relationships that feel safe, flexible, and understanding can have a powerful impact on well-being. Feeling seen and believed is foundational, especially when symptoms are invisible or unpredictable. Being trusted without having to explain or justify symptoms can reduce stress and emotional exhaustion. Support may be practical, such as help with transportation or daily tasks, or emotional, like listening and validation. Needs can shift over time, and both forms of support matter.
Peer connection often plays a unique role. Sharing space with others who have MS can ease isolation and reduce the burden of explanation. Members of our MS Young Professionals Network (MSYPN) have shared the sentiment: “With other people who have MS, I don’t have to explain what I’m going through, they already get it.”
This is why MS-specific spaces, including support groups and education programs, can be especially valuable. Designed with lived experience in mind, these spaces make it easier to participate authentically.
Family, friends, caregivers, providers, and community members also play essential roles. When relationships are grounded in empathy and flexibility, they help people with MS stay connected to others and to themselves. If you don’t feel like a relationship fully understands your experience, consider sharing your favorite MS resources and programs with them.
Connection Looks Different for Everyone
It’s important to remember that there is no single right way to be connected. Guidance from Mental Health America emphasizes that spending meaningful time with trusted friends, family, or community groups and doing shared activities that create a sense of belonging matters more than simply increasing one’s number of social interactions.
Some people are energized by groups, while others are energized by quiet one-to-ones, or alone time to recharge. For some, one deep relationship is more nourishing than many light connections; others benefit from a wider circle. In-person gatherings may feel grounding, while virtual or flexible contact, such as texts, online groups, and recorded programs, may be more sustainable when fatigue, mobility, or distance are challenges.
It’s also normal to move through times of engagement and withdrawal. Resting and pulling back at times can be strategies for self-regulation and self-compassion.
The most important message is this: connection isn’t about doing more. Instead, it’s about what genuinely nourishes you. Rather than a single solution, connection in life with MS often requires flexibility — from individuals, families, healthcare systems, and communities. The goal is not constant social activity, but environments and relationships that can adapt to changing energy, symptoms, and needs. When connection is flexible, people are more able to participate authentically.
Reframing Connection as a Health Resource, Not a Personal Responsibility
Strong social ties protect mental and physical health. According to the CDC, they are linked to lower risks of major chronic diseases and better overall well-being. The World Health Organization notes that strong connection is associated with reduced inflammation, lower risk of serious disease, and protection against early death.
Because of these effects, isolation isn’t simply a personal issue. Transportation gaps, inaccessible buildings, limited broadband in rural areas, inflexible work policies, and gaps in culturally informed care all contribute to disconnection.
Health and social science research increasingly shows that the health impact of isolation can rival or exceed that of traditional risks like smoking, poor diet, and inactivity. Strengthening connectedness, therefore, is both a self-care and a systems-level responsibility.
From accessible public spaces to telehealth and hybrid community programs, the environments we build shape who gets to stay connected. Community and patient advocacy organizations play a critical role by creating welcoming and inclusive spaces for education, peer support, and advocacy.
Connection as Care in All its Imperfect Forms
Research across institutions from the CDC to the World Health Organization to leading universities tells a consistent story: people live longer and healthier lives when they feel connected, supported, and that they belong. Connection might be a brief text instead of a long visit, an online group when leaving home is impossible or too daunting, or one deeply trusted relationship rather than many.
Some self-reflection can be helpful in guiding your own path along the way. Asking yourself questions like this:
- What kinds of connection nourish you right now?
- What feels supportive, and what feels like too much?
- Where might you offer yourself a little more grace?
Some days that may mean reaching out. Other days it might mean simply allowing someone to reach in. It may look like laughter, quiet companionship, an honest conversation, or shared silence. It may be built slowly through small, steady moments rather than big gestures.
Connection can be imperfect, fluctuating, and interrupted, and yet still be deeply real and healing. Each text message, flexible plan, supportive presence, and moment of feeling understood is a reminder that no one has to navigate MS entirely alone. Connection can take many different forms and with it we can create spaces not only for support, but strength, compassion, creativity, and resilience.
In life with MS, and in life generally, connection isn’t about doing it perfectly. Small, steady points of contact can meaningfully support health and well-being.
