Listening to Stories for Better Health Care

Prescribing Patient Experience Stories to the Ills of Modern Medicine

Pain Talks was born on about a year ago. It was conceived out of my kinky need to stay active in the online world while I went back in to full-time clinical work. It wasn’t a thriving baby, and it had an absent mother who nurtured it only occasionally. As it should have been walking and starting to talk, Pain Talks was still trying to roll over. If ever there was a parental failure, it was me and my Pain Talks baby.

I really only started working seriously on Pain Talks about six weeks ago. The trigger to get my act together? I had the flu, and in my sick and groggy state I remember thinking “chronic illness must be great, I get to stay in bed and I don’t have to go to the gym”. After I slapped myself about the head, and laughed at the stupidity of that fleeting thought, I realised that there was work to be done.

This post is a reflection on what I have learnt and observed over the past six weeks by collecting stories and talking to the amazing group of humans that have written down their stories of pain and illness. I want those writers to know their stories matter, and have helped me do my clinical work better. Your stories are precious and I thank you for sharing them with us. You’ve shown me that I can’t write about pain, as I don’t live it. I can only write the stories of my own experiences, and what I learn, that adds to the shared pool of understanding about pain and health. Here’s what I think I can write about now…

1. Stories are Critical to Care
Collectively there are many stories to tell of health and health care. Narrative medicine is a fascinating area of using stories as an intervention, essentially in the way that shamanic healers have for centuries. The internet and platforms such as Medium allows people that want to share their lived experience of health and illness, and how it has has affected their lives, to do so with a wide audience. The bravery and courage to do that, and to educate, inform and involve others in that journey is incredible. The recurring theme I notice as I read is of secrecy, silence and judgement within health care, and this is the breeding grounds of shame. Shame is negatively correlated with poor health behaviours and outcomes (thanks Brene Brown!). If sharing stories and writing about our experiences as narrative medicine allows us to feel connected, and build shame resilience, we open up a crack of possibility that we can start to explore some of the other options available to manage pain and do better pain medicine.

To share more stories in the clinic, we need to make a safe place for patients to be vulnerable. We need to ask better questions, design a better environment, make people feel safe. We can’t just show up and “do medicine” — we must “be” part of the medicine — caring, healing and reassuring. We can’t offer solutions, suggestions and co-create interventions that work if blame and shame are sitting in the treatment room with us.

2. Pain is the Hardest Medicine
Pain is the hardest disease to treat — and it affects us all. It’s a physical disease, and a social disease — and it’s an invisible illness. The better people manage and cope with it, the less it looks like they are struggling. It takes away opportunities, and makes lives smaller, it reduces humans to far less than they can be. It’s the chronic disease that can affects all of us even if we’re not the patient being treated. We can’t sit back and watch pain happen… we’re neurologically wired to take action and try to make the situation better for the other person. When it doesn’t get better, we get desperate. The collective “we” of humanity. The fear, anger and blame surrounding the access to opiate medications, and the need to quickly find some better solutions for suffering can be a mobilising force for us to work together. I’m sorry that we’ve done badly at helping people with pain — we haven’t found the right ways to use Pain Science in clinical practice at the speed and scale that it’s been needed. I’m sorry that prescribing medication was given as a solution, when it’s only a part of effective pain management. There’s not many easily accessible options for people suffering with pain, and we need to work together to keep trying. I am so absolutely grateful to the people that have agreed to put their stories in to Pain Talks to give us data to design from.

3. Watching my Words, Co-creating solutions
Reading Pain Talks stories has influenced my day to day clinical practice. It’s shown me the things that are absolutely critical in the practice of health care. How I talk, explain and ask question has the potential to harm and cause ongoing problems for people with the story they tell themselves about their illness. While I’ve known this for some time, the importance has stood out for me in my day to day work. The “elephants in the room” that remain unspoken and unacknowledged grow up to be fiery dragons that drive coping and behaviour. The MRI results that we don’t talk about but remain scary can go on to drive panic and the feeling of catastrophe with any pain. Pain and symptoms need an explanation and a story that makes sense too. Above all, it’s my job within the practice of medicine to find stories, myth bust the barriers to getting better and help new stories be created that build a resilient brain and body. Asking the difficult questions and making new meaning has kept one patient out of spinal surgery this week. Creating a new understanding of a pain flare-up helped another patient stay at work, while asking for the help they needed, rather than retreating to bed with neck pain. If reading and writing stories increases my sensitivity to the needs of others, then we need to keep writing and prescribe stories to our fellow health practitioners (and students) stat!

4. Crowdsourcing Empathy
Reading stories of people in pain shows the huge deficit in empathy within our current “sick-care” experience. I’m deliberately going against the grain here to say that empathy is not something we should expect, or want, from our medical professionals. The true definition of empathy is to be able to sit with someone’s story and their pain, and not try to change it, but simply allow that person to be heard and share their experience in their own way. Brene Brown (again!) describes it brilliantly in this video. I think we can take two roads here to reduce the silence and judgement that is such a common theme in stories in Pain Talks. We can understand the need to “feel felt” — a term described by Daniel Seigel in “Mindsight” — and strive for this in our clinical work. We can also search out the other sources of empathy and connection that exist within our life, both online and offline, that can foster the critical need to feel heard and not alone.

As we collect more stories in Pain Talks, and build on the fledgling community we have here, I hope we’re growing Pain Talks in to a safe place for people to tell their story and find the stories of others that shows them they are not alone.

5. Finding My Place at the Table
Sharing these stories and insights in Pain Talks makes me feel like I have a better place at the table for helping people, like I can be included in this conversation. You’d think as a clinician, I’d feel like I have a place here too, in making medicine and health better. I have to stare down my “not good enough” gremlins that say “you’re just a clinician, you never went to (insert Ivy League School here), you chose not to get a higher degree, you haven’t earnt a right to sit at this table” yet I treat patients all day, everyday.

In the whirlwind of a hectic clinical day, we also struggle to give everything we could if we didn’t have time pressures and fatigue. It’s my job as a Physical Therapist to unravel the physical causes for pain, to have a solution and deliver outcomes that can be easily explained to your insurance company. Sometimes we don’t have solutions that are accessible or easy to deliver, and we have shame in not having the answers. You bring your whole life to us, and give us an enormous place of trust, and sometimes we put more work on you than you can fit in to your life. Sharing patient stories and reading and understanding them has helped me find a new lens through which to do my clinical practice with even more attention to the person in front of me. I am so grateful for that, and I’m committed to getting more stories to people to share perspectives and question “this is how we’ve always done it”.

After a slow start to life, Pain Talks is a toddler finding it’s feet and working out the world. We’re curious and inquisitive, and we’re making new friends everyday. We’d love you to join us — read our stories, write your story to share with us, follow Pain Talks on Medium and on Twitter so we can keep you in the conversation about what we have planned next. Play dates, trips to the zoo, and first days at school are the things we’ll be looking forward to sharing with you as Pain Talks grows up to take it’s place in the grown-up world of Health Care.

(Remember the comments below — add your thoughts and ideas about what’s we’re doing here, you might inspire our next story!)