Can a story change our healthcare system? Using narrative to promote change
The other day at the dinner table Daniel thought it would be fun to count the number of doctors that follow him. As we went through the list of clinics and the doctors between two hospitals and other clinics, we calculated somewhere between 12-17 doctors that are a part of the ‘conversation’ of his disease.
This is of course just his regular doctors and not all the doctors he has seen in his lifetime. He has seen medical students, residents, emergency room doctors, consultants, etc. He has been the subject of doctoral training. We have seen a lot of different doctors.
Once a student doctor told me it took him an hour to read through Daniel’s file. I can only assume that was just reading, let alone understanding it. All this to say, seeing a doctor is a more than regular occurrence in Daniel’s life.
Now he is far from the standard case—and of course, our family’s time in the health care system is more than the average—but I am a relationship person. Relationship development and understanding individual narrative—and how it affects our desire to give and effect change—has been what I do. This has caused me to observe interactions and relationships and first impressions often within the hospital.
Each one of us is going to need a doctor at some time or another. This year, doctors have been needed more than ever as we all have had to face the pandemic. We have heard the narratives of our heroes on the front lines; we have also been angered by news of neglected patients. We might have anger towards medical professionals telling us to wear masks, or anger at those who refuse to listen to our health professionals. We all have different emotions and relationships towards the health profession.
I am curious, though, about these relationships and feelings. What makes us call them heroes, or call them out in anger on social media? Is there a personal link or relationship that has caused your reaction?
Our family are strong advocates of our doctors. Why? First, let me explain why we shouldn’t be that way. Daniel’s journey has been far from easy. He is 6 years without a concrete diagnosis. There is no certainty of his future. He has an autoinflammatory disease that frankly most of the world knows barely anything about and in many cases because of its rarity cannot justify prioritizing. He has been on high doses of horrible steroids for prolonged periods of time. He’s been on multiple cocktails of medications. He’s gone weeks and months in pain without help because no one had answers.
You would think with a story like that, we would toss up our hands and say, Screw this system! It’s broken! No one cares.
But no, we absolutely do not believe that.
Yes, things need to improve; his disease needs to be recognized, and improvements need to be made. But the reason we remain advocates of his team is exactly because of that word: team. Time has given us the benefit of pushing us together with the healthcare community. We have to communicate with them. We have had the pleasure of getting to know them. We have developed relationships with them. Do we always agree? Absolutely not! Do we struggle with the answers? Absolutely!
Do we trust them? Totally.
Because we know them. We know that when they went to school to become a doctor, they did it because they wanted to make a difference for people; they wanted to help. We know that when they went into a field like rheumatology, they did it because there was little to no help for kids in that field and they didn’t want any child left without answers to live a life of pain. We know they are human and don’t have all the answers all the time. We know they have pressure from having a rising number of patients to treat, paperwork to do, and learning and research to continue, while also trying to inspire other new doctors to join them so that as the need grows so do the people who will rise to meet it. I know some of them are parents to their own children. I know that when they see my son, their connection with him is real and that he is not just a name on a chart.
Now I know this is a unique situation, and our story is ours, and hopefully, you don’t have to spend as much time with your doctor as we have had to with Daniel’s. The reality is this isn’t a relationship I would ever hope that you need to cultivate, but at some point or another—whether due to illness or injury or end of life—you will need them.
Doctors, we need your expertise and knowledge and we are thankful for it. But we also need your humanness, connection, open communication, control of our own bodies, and compassion.
Even doctors will one day need a doctor, and you have a unique view where you know that when your doctor comes into that room you are not the first person they have seen that day. Maybe their other patients are better or worse off than you, but there may be many pressing questions from many cases on their minds. But you will also understand your own desire for compassion, for answers, for control, and a need to build trust with the person who is helping you.
When we see a doctor—particularly a specialist—it’s often because we have reached a point where we are hurting; where our pain is our all-consuming priority. I find for myself, it’s even worse when I take Daniel to appointments because it’s not my pain but the pain of my child that consumes me, and truthfully to me that feels worse.
If we can choose vulnerability and humanness with one another and are willing to share our narrative, then maybe we can improve communication and help one another improve our healthcare system. If we can understand the other person’s view and step into their shoes even for a few minutes, maybe we can find answers, reduce pain, work together, and inspire each other towards a better, healthier more holistic future that combines science, medicine, nature, and relationship.
