Making #Invisibleillness Visible
Casting light on the Lived Experience of Chronic Pain
Have you noticed there’s a huge population of people for whom health care doesn’t seem to be working as prescribed? People with persisting pain are taking their health care system as directed, but the symptoms are persisting. The feeling of being unseen, unheard and judged are such a common narrative related to pain, how can we ignore it any longer?
Diagnosing An Empathy Deficiency
Saying that we understand what chronic pain feels like because we’ve hurt our back previously is like saying we understand how childbirth feels because we have had stomach cramps. People tend to think that because they have experienced the general feeling of pain in their daily life, that people with persisting pain have the same experience.
If we listen to people’s stories with pain, we must realize that we don’t know what this pain feels like. Living in chronic pain is living in another world, yet people with pain do their best to live in ours — and they’re judged for using some medication to do their best to get through life.
The #invisibleillness hashtag intersects with the #chronicpain hashtag far too frequently. Something happened this week that I had to write about. From what I could see, and read on the internet, we were able to witness what being unheard looks like.
The #freebritt Moment
At Medicine X at Stanford, we watched the #freebritt moment happen. That moment when the true expert on pain, the person that has lived with it and tried to make sense of it, was unheard amid a panel of experts from various facets of pain medicine and management. While I’m aiming to maintain a balanced position, from the livestream and Tweets it looked liked an accurate reflection of the need for people in pain to shout to be heard in the healthcare conversation. Just as happens in Doctor’s offices, the person with the need for help becomes “difficult” as we struggle to hear them. Even where “Everyone Included” is our theme — whether at a conference or in the everyday practice of clinical care, we’re seeing very clearly that people in pain are not being seen. To design things that change pain, and the pain experience, we have to sit alongside people and really understand the experience.
As a Health Care Professional (abbreviated to HCP), my experience is that the day-to-day structure and practice of how we do medicine adds to being unheard. We have to put people in to timeslots — and try to be effective at meeting people’s needs when the human experience cannot be fit in to a billing time code.
Human Stories Matter
Firstly, stories enable people to feel felt, and to have a voice as an active participant in their health care planning and decisions. Secondly, and more importantly, the story is where the data lives. In pain, we don’t have have any test or scan that tells us about pain. We can know about pathology, which may or may not be painful, but we don’t have a test to diagnose pain itself. We must hear the stories, and use that data to help people to help themselves in recovering and managing their pain experience.
I’ve had the privilege of collecting the stories of people in pain on the Pain Talks collection on Medium for the past six months. It started because I recognized something in myself that lacked empathy for people with chronic illness. In bed, recovering from the flu, I had the thought “chronic illness would be great, I never have to get out and face the world”. After mentally slapping myself in the head, and my more conscious brain recognizing the disconnect with my daily mission as a HCP to help people in pain, I started looking for stories. We now have over 100 stories from people in pain — we’re diagnosis and pathology agnostic, and I didn’t seek out the stories. I wanted to see what stories people really wanted us to hear. I wanted to know what data was living in those stories and experiences that people were desperate for us to know.
What We Have Learnt from Pain Talks
We’ve combed through the stories and found four key themes that we can understand to help us design better care for people in pain. We might be waiting a long time for new biological treatments and research — but with understanding and care for the people living the pain experience, we can make the day to day journey easier. Have a look at the four principles we discovered by clicking the links below:
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
We’re using these design principles at flareup.io to bring pain care to people’s lives, wherever they are (even in their bed!). We’d love you to JOIN US and add your story and support to making pain care better for people that need it.
