Photo: Unsplash@volkanolmez

The Magic of Words in Health Care

Crowdsourcing Empathy and Designing from Story

When I noticed there were lots of stories about people living with pain on Medium, I wondered if we could put them in one place. Those amazing people that shared their stories allowed me to put them together in to the Pain Talks collection. As we collected more and more stories (now we’re over 100 and building), I noticed there were some themes that seemed to be common amongst people’s experiences. I wondered if we could create some principles to share with people, so we could all learn more about what pain as a disease is like to live with.

I wanted to understand what life was like for people in pain, and how we might change the way we offered them services and products based on their experiences. Essentially, this is design research, using people’s stories rather than interviews, as a starting point for product and service design. Based on the the stories we had in the collection, we pulled them apart to learnt about this disease better. We talked about the “lived experience” of pain as the term is used to describe the narrative of oppressed and minority populations. This was important as there was such a key theme in the stories of feeling unheard, unvalidated and unsupported in this illness.

As a Physical Therapist, a health care professional, the stories I heard of people’s interactions with the health care system was unacceptable. Quotes such as “what these doctors did was to intensify the mental anguish of a patient already suffering from repeated periods of severe physical pain, and who was just asking for help” with regard to pain treatment cannot continue. I know of no other disease where an entire patient group of people are treated as though they are not able to be helped or treated with decency. I also know that we can do better, because that’s what we do in the clinic with patients everyday.

These are the four post written about the key themes we found in the stories. Please read them, comment and recommend them (the green heart at the bottom of the post). Through understanding these experiences we can do better in the way we talk about pain, interact with people in pain and how we approach the pain experience medically.

Part 1: Seeing and Hearing People with Pain

Part 2: Reclaiming Quality of Life with Pain

Part 3: Where’s the Good Information about Pain?

Part 4: Labels, Blame and Shame in Chronic Pain

It turns out that narrative medicine and design research are great friends. Writing stories of experiences down is a therapeutic process for people in many diseases, since narrative helps us make sense of our experiences. Complex and chronic illnesses are life events that fundamentally change how we experience life and our world. Sharing stories crowdsources the empathy that is so critical to changing how we eliminate the stigma about illness. To change the practice of health care in a positive direction, and to make the changes that puts the joy back in to stories, we need data. We need to know where to start to turn things around. Luckily, stories are data with a soul. Your stories show us what we can change better in our systems, processes and access to care. We’re working on changing how we approach pain over at flareup.io, and we’d love to help you share your story. Your story can make a difference.

If you have a story about pain, injury, medicine, rehab, hurting, helping, coping and thriving, then we’d love to help you publish it. It could be about your illness, or how a friend or family members illness has touched and affected you. We can help you tell your story, and share it with the world. You can keep it anonymous, or you can add your name — and still share it with the world. We will help you edit it, you don’t need to send it to us word perfect. Here’s one we published recently from our friend Ben, and his recovery from a paragliding injury.

We have collected stories from people living with pain in the PainTalks collection. Writing your stories down is a good therapeutic process, even if you never publish it. We’re using those stories to deign better pain information for you via PainChats, here’s your invite to join us!

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