Strength in Community: The Role of Support Groups in the Lives of Spoonies
Living with a chronic illness can feel like trying to find your way through a labyrinth—one where the walls shift unpredictably, energy is a limited resource, and the rules seem designed for someone else. For chronically ill individuals, or “Spoonies”—those who measure their energy in "spoons" (a term coined by Christine Miserandino to describe the finite energy reserves of chronically ill individuals)—finding spaces of understanding and support can be vital for mental and emotional well-being.
Through the lens of disability justice, joining a chronic illness support group can offer empowering benefits. Disability justice acknowledges that chronic illness intersects with other systems of oppression, including race, class, gender, and sexuality. From this perspective, community spaces like support groups provide a collective response to isolation, ableism, and societal disregard. Here are some key benefits of joining a support group as a chronically ill human:
1. Combatting Isolation with Community
Spoonies frequently experience isolation because chronic illness can make it difficult to attend social events, often due to issues like chronic fatigue & pain, or lack of COVID safety precautions. These factors can make it difficult for us to connect with others.
A support group can offer a safe, accessible space where we don’t need to explain or justify our experience. Spoonies can share struggles, joys, and fears with others who get it, forming a collective identity rooted in shared lived experiences. From a disability justice perspective, this allows for interdependence, where group members support each other without judgment, building solidarity rather than forcing conformity into able-bodied norms.
2. Validation and Empowerment
When we live in a society that frequently minimizes or altogether disbelieves our pain and experiences, internalized ableism can show up in a big way. We may start to question our own worth, feel guilty for needing rest, or struggle to ask for help. Support groups offer validation—the recognition that our experiences are real, valid, and deserve space.
In a group setting, hearing others express similar struggles can validate our own feelings. It can also serve as a reminder that chronic illness is not an individual failing but rather a reflection of a society that was not built with disabled or chronically ill people in mind. This shift in perspective can lead to greater empowerment, helping us recognize our intrinsic worth and fight back against the ableist narratives we may have internalized.
3. Exchanging Practical Strategies
Disability justice encourages collective wisdom and emphasizes that the most valuable knowledge about chronic illness comes from those living with it, rather than from medical professionals or well-meaning but uninformed friends and family. When we share strategies for pacing, self-advocacy, or emotional resilience, we’re engaging in a practice of community care, ensuring no one is left to figure everything out alone. Support groups become a resource exchange, where members share tips for everything from navigating the medical system to managing relationships, employment, and self-care.
4. Building Resilience Through Mutual Support
Resilience is often framed as an individual quality, but from a disability justice perspective, it’s something built collectively. Support groups are a place where we can hold space for each other's pain and joy, where the ebb and flow of spoons is understood, and where mutual care is the norm. Spoonies can feel safe expressing difficult emotions, like frustration with their bodies or grief over lost abilities, without fear of being shamed or dismissed.
This shared space to process and reflect creates an opportunity for healing in community, rather than in isolation. It is also a reminder that self-care is not selfish—sometimes resting, saying no, or asking for help is the most radical act of resistance against an ableist society.
5. Shifting the Narrative Around Chronic Illness
Societal narratives around illness often center recovery and overcoming illness and suggest that "you see a doctor when you're sick, and the doctor fixes it." These perspectives overlook the complex realities of existing with a chronic illness, as well as the chronic nature of chronic conditions, making it hard for non-disabled people to understand these experiences. They also reinforce ableist ideas that being sick or disabled is inherently deficient. Support groups provide space to redefine what it means to live with chronic illness on our own terms.
In these spaces, we are free to celebrate small victories, embrace the complexity of our emotions, and reject the expectation to be “productive” or “inspirational” in ways that serve able-bodied norms. We can also explore new narratives of thriving that prioritize pacing, rest, joy, and self-acceptance rather than striving for unattainable Capitalist ideals of hustling and grinding, prioritizing work over health and relationships, and self-optimization.
6. Cultivating Radical Acceptance
Living with chronic illness often involves navigating unpredictability and loss. Support groups can be a place to practice radical acceptance—acknowledging our limitations without judgment, accepting our bodies as they are, and finding ways to live meaningfully within those constraints. This can be incredibly freeing, especially when supported by a community that encourages gentleness, compassion, and self-kindness.
Support groups are more than just a gathering of people with similar conditions; they are a powerful space for collective healing and resilience. Through these groups, spoonies can break down the isolation of living with chronic illness and imagine a future that includes us all—a future where interdependence is valued and our worth is not tied to productivity or physical ability. In the words of disability justice activist Mia Mingus, “All of us who have been pushed to the edges, living lives full of survival, have something to teach each other about how to keep going.”
In solidarity, Niki
Check out Niki’s support groups here:
Wednesday Spoonies Unite Support Space
Thursday Spoonies Unite Support Space
Friday Spoonies Unite Support Space
Interested in working with Niki? Connect with her at Niki@RoomToBreatheChicago.Com