The mission of Health Story Collaborative is to keep the patient voice alive in healthcare and to harness the healing power of stories.
By collecting, honoring and sharing stories of illness and healing, we strive to make the process of navigating illness less isolating and to empower individuals and families facing health challenges.
Our belief, supported by research, is that storytelling is healing for both story sharers and listeners. Stories have the power to transform individuals as well as the healthcare system.
Illness can be frightening, isolating, and dis-empowering. Our market-driven medical institutions can exacerbate these feelings, and as patients we are often left wanting, despite the unprecedented scientific and technical achievements of medicine today. In the fifteen minute medical appointments that have become the norm, our stories are cut short. Instead of feeling listened to and heard, we commonly feel rushed and overlooked. Instead of feeling seen and understood, we often feel lumped and categorized–a diagnosis or a collection of symptoms rather than an individual. Illness is cast as the enemy, something to “beat”, and “healing” is equated with the eradication of disease, often without consideration of psychological or spiritual health. This limited framework can breed loneliness, fear, shame and defeat.
It doesn’t have to be this way.
All of us will encounter illness in our lives, either directly or indirectly. We need to reclaim our personal healing narratives, our stories. Herein lies our power and our path to wholeness.
The power of healing narratives is both personal and collective. While obviously none of us chooses illness, we can choose how we handle the challenge. Telling our stories allows us to integrate illness into our lives and to incorporate it as part of who we are instead of fighting against it as the enemy. Ideally, we are able to find meaning in our health challenges, and gain perspective, compassion for ourselves and others, empathy, and wisdom.
In addition, sharing our stories is a gift to others, and a way of turning a negative into a positive. In the wise words of medical sociologist Arthur Frank, “People tell stories not just to work out their own changing identities, but also to guide others who will follow them. They seek not to provide a map that can guide others–each must create his own–but rather to witness the experience of reconstructing one’s own map.” In sharing, we can spread hope, even if we are not “cured” of disease. Our stories never end. They are continually changing, and are never “resolved”. Pain, suffering, and ambivalence can co-exist with peace, joy, and self-love. Healing can take many forms. Sharing our stories helps others to find their way, and reminds us all that we are not alone.
* We define “illness” as any imbalance in the physical, psychological, or spiritual well-being, and “healing" as the process of moving toward balance and wholeness. We believe in the value of these stories as a celebration of hope, human resiliency and dignity.