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 apart 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 then regular occurrence in Daniel’s life.

Now he is far from the normal 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, 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, 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, a 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 then 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 its 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 we are willing to share our narrative, then maybe we can improve communication and help one another to improve our health care 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.

2 replies on “Can a story change our healthcare system? Using narrative to promote change”

Thank you for sharing. I’m so grateful that Daniel has a wonderful team working with him and for him including a supportive family and extended family.
I have to be honest and say that not all doctors get into the field of medicine because they care however. I’m sure that’s mostly true in the fields of childhood diseases and caring for children however. I do know of children who are pressured to go into certain fields by their families and to achieve a certain status in life.
In my experience with ongoing neurological problems, seizures and autoimmune disease I have not found a similar level of care or compassion. This is also true in dealing with my now aging mother who has brain surgery twice. We have unfortunately both been treated as statistics and concerns were dismissed by multiple doctors. This has been a long term experience with myself, my son and other family members. Although we try to advocate for ourselves and continue to educate ourselves it is a challenging process.
I realize this is not everyone’s experience but it has been the case for our family.
I’m grateful for friends and family who pray for me and support me in my challenges.

Hey Karen,
Thank you so much for sharing, I know that its not always easy especially when their is tension in the situations. Your experience is exactly the kind of narrative I am interested in. You are right, each individuals story and reason for being in medicine might be different and some may have chosen to become doctors for different reasons. My experience is simply based on my conversations and interactions with Daniels doctors. But my experience isn’t the only one, and it isn’t true for everyone. Which is why sharing our experiences are so important to help change things.
I am curious to know what interactions with the healthcare community lead to the feelings of lower levels of care, and limited amount of compassion (probably a conversation in a private forum, or in a survey from the medical community) but was it lack of eye contact, inability to listen, body language, verbal dismissal, maybe all of the above! I think the medical community has the ability to learn from your experience and that’s why I am so interested in hearing peoples experiences from both sides.

Not to dismiss or discredit them, but to learn from them and find ways to improve things. Keep advocating for yourself, and researching, you are an expert in your own body and no one knows it better then you. You are a leader in your own health journey and should not feel like your voice shouldn’t be heard or your needs vocalized. If you don’t have a doctor that will listen and understand then keep searching for someone who will. We have a great team for Daniel now, but getting here has been part of our journey. (Another blog post to come)

Thank you again for engaging in this conversation, and hopefully more voices will join us and we can pull some lessons out of these experiences.

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