The Village We Lost
Why Managing EDS Alone Is Making Everything Harder
And how we can rebuild community care that actually works
"It takes a village to raise a child." We've all heard this phrase, nodding along while secretly wondering where exactly our village went. But here's what nobody talks about: it also takes a village to manage a chronic illness like Ehlers-Danlos Syndrome. Yet most of us are trying to navigate this complex condition completely alone, wondering why everything feels so impossibly hard.
The truth is, we weren't designed to carry this load by ourselves.
What We've Lost
For most of human history, we lived in interconnected communities where everyone knew your story and your struggles. When someone got sick, the community rallied—not through organized charity drives or carefully scheduled meal trains, but as a natural extension of daily life. Children were raised by multiple adults. Grief was witnessed and held by many. Joy was celebrated in groups. Support wasn't something you had to ask for; it was woven into the fabric of how people lived.
We've lost something profound in our move toward individualism and nuclear families scattered across cities and states. What we've gained in privacy and independence, we've paid for in isolation and the weight of trying to manage everything alone.
This shift hits differently when you're living with chronic illness.
When I was first diagnosed with hEDS and POTS during my final year of physical therapy school, I was navigating new symptoms, learning medical terminology, figuring out which doctors to see and what questions to ask. I was grieving the version of my future I'd imagined while trying to build a new one that made sense with my body's reality. And I was doing most of it alone—not because people didn't care, but because the infrastructure for that kind of deep, sustained support simply doesn't exist in most of our lives anymore.
Friends wanted to help, but they didn't know how. Family members offered advice that didn't quite fit. Colleagues were kind but couldn't really understand why I needed accommodations for something they couldn't see. I found myself in the strange position of being surrounded by people who loved me while feeling profoundly isolated in my experience.
The Hidden Cost of Going It Alone
This isolation isn't just emotionally difficult—it has real, measurable impacts on our health. Research consistently shows that social isolation affects our physical wellbeing in startling ways. Chronic loneliness increases inflammation, suppresses immune function, and elevates stress hormones. Studies have found that the health impact of loneliness is equivalent to smoking 15 cigarettes a day or being severely obese.
For people already managing chronic conditions, this isolation can amplify symptoms, slow healing, and increase the risk of depression and anxiety. Our nervous systems are designed to regulate in relationship with others. When we feel seen, understood, and supported, our bodies literally relax. Heart rate variability improves. Cortisol levels drop. Pain perception can decrease.
We are wired for belonging at the cellular level. Our bodies know the difference between being alone and being lonely, between being independent and being isolated. And when we're cut off from meaningful connection, especially during times of vulnerability, our entire system suffers.
When "Fitting In" Becomes Exhausting
For those of us living with conditions like EDS, this need for connection bumps up against some harsh realities. Our symptoms are often invisible, making them difficult for others to understand or accommodate. Our energy is limited, making it harder to maintain the social rituals that typically sustain relationships. Our needs can feel complex or demanding in a culture that values self-sufficiency above almost everything else.
The result is a kind of double isolation: the practical isolation that comes from not being able to participate in life the way we used to, and the emotional isolation that comes from feeling misunderstood or like a burden to the people we care about.
I spent years trying to "fit in" by making myself smaller, more palatable, easier to be around. I masked my pain, downplayed my limitations, and pushed through symptoms to avoid being seen as difficult or dramatic. I thought this was what relationships required—that I had to earn my place by being as close to "normal" as possible.
But fitting in is exhausting when you're living with chronic illness. It requires constant performance, endless energy you don't have, and the painful act of hiding parts of yourself that need care and understanding. Worse, it doesn't actually create connection—it creates distance, because the people who accept this masked version of you aren't really accepting you at all.
Building a New Kind of Village
The village we've lost may be gone, but the human need for belonging remains. And that need—your need—is not something to apologize for or minimize. It's evidence that you're human, that you're wired for connection, that healing happens not in isolation but in relationship.
What I've learned through my own journey is that we can build a new kind of village. It won't look like the traditional communities of the past, but it can provide the same essential elements: understanding, support, and the deep relief of being known and accepted exactly as you are.
This modern village might include:
Genuine relationships where you can bring your whole self and still be enough. The friend who doesn't make you explain why you need to cancel plans, who remembers that specific environments trigger your symptoms, who adjusts without being asked because they care about your comfort.
Virtual mentors whose voices guide you through dark moments. The authors, researchers, and thought leaders who become part of your support system through their words, even if you've never met them.
Online communities that understand your experience without explanation. The chronic illness groups, condition-specific forums, and social media connections that provide both practical advice and emotional validation.
Professional allies who see you as a whole person, not just a collection of symptoms. Healthcare providers, therapists, and practitioners who understand that your health exists within the context of your life, not separate from it.
From Receiving to Contributing: Becoming a Villager
But here's what I've discovered: building your village isn't just about getting support for yourself, though that matters enormously. It's about creating a world where everyone's humanity is honored, where needs are met with curiosity rather than judgment, where interdependence is celebrated rather than shamed.
The most profound shift in my own journey came when I stopped just trying to find my village and started actively becoming a villager. This meant moving from being a passive recipient of care to someone who contributes to a culture of mutual support, even within the constraints of chronic illness.
This looked like:
Sharing my story when it felt right, giving others permission to acknowledge their own struggles
Offering support in ways that matched my capacity—maybe I couldn't help someone move apartments, but I could offer a listening ear during their difficult time
Asking for help clearly and without apology, modeling that needs aren't burdens but opportunities for connection
Creating space in my relationships for others to be human too, to have limitations and needs and difficult days
The Art of Reciprocal Care
One of the biggest myths about chronic illness is that needing help makes you a burden. But research tells us something counterintuitive: when you ask people for small, specific favors, they actually like you more, not less. It's called the Benjamin Franklin effect, and it happens because the act of helping you creates investment in your wellbeing and builds connection rather than resentment.
The key is understanding that reciprocal care doesn't mean keeping score. It means recognizing that healthy relationships involve give and take, and that your capacity to give might look different from others' but is still valuable. Maybe you can't help someone move apartments, but you can remember important dates and send thoughtful texts. Maybe you can't host dinner parties, but you can offer your unique perspective, your humor, your care for their lives.
Your worth in relationships isn't measured by your productivity or your ability to meet traditional expectations of friendship. It's measured by your willingness to be real, to care genuinely, and to participate in the give and take of human connection in whatever ways you can.
Starting Small, Building Steady
You don't have to rebuild the entire village overnight. In fact, the most sustainable communities are built slowly, through small, consistent acts of connection and care.
Start with one authentic conversation where you tell the truth about how you're doing. One genuine request for help that honors both your needs and someone else's boundaries. One moment of showing up for someone else in whatever way your current capacity allows.
These aren't dramatic gestures, but they're powerful ones. Every time you choose authenticity over performance, every time you ask for help without apology, every time you show up for someone else in your own imperfect way, you're building that world.
The Ripple Effect
Your needs don't make you a burden—they make you human. The radical act of showing up as you are, rather than as you think others want you to be, isn't just healing for you. It's healing for everyone who witnesses it, who sees that they, too, can stop hiding their struggles, their limitations, their beautifully complex humanity.
When one person in a family or friend group learns to ask for help clearly and without apology, others often become more comfortable expressing their own needs. When someone demonstrates that accommodations aren't special favors but basic accessibility, it changes how the whole group thinks about inclusion. When you refuse to apologize for your limitations while still contributing meaningfully to relationships, you give everyone permission to be more human.
The village you're building doesn't have to be perfect or large or look like anyone else's. It just has to be yours—filled with people who see you, spaces that support you, rhythms that honor your reality. And the most important thing to remember is this: you don't have to earn your place in that village. You already belong.
Your presence, your perspective, your care for others, your willingness to be real—these aren't consolation prizes for not being able to contribute in traditional ways. They're gifts that only you can give, exactly as you are, right now.
The world needs your particular way of being human, your unique understanding of resilience, your hard-won wisdom about what really matters. Building your village isn't something you complete—it's something you live. And you don't have to wait until you feel worthy or capable or healed enough to begin.
You can start from exactly where you are, with exactly who you are, knowing that you belong not despite your complexity but because of it. Your village is waiting for you to come home to yourself, and to let others come home to themselves, too.
This post is adapted from my upcoming book "Bending Better: A Gentle Strength Blueprint for Living Well with Ehlers-Danlos Syndrome, Chronic Illness, and Invisible Pain." If you're interested in exploring these themes more deeply, along with practical tools for building community while managing chronic illness, you can dive in to my masterclass.
