Being seen, feeling heard
Reflections from working with patients to visualize their health
I’ve spent the last six months starting Pictal Health, a company to help patients tell their health stories visually. During this time I’ve been piloting a service that includes a few steps: talking and listening to patients and getting their full story, preparing visuals based on what I heard (usually a timeline and sometimes a symptom diagram on a body shape,) and helping them feel prepared for their next doctor appointment.
Although I have a big vision for where Pictal Health could go and how it could reach many people, right now I’m taking it slow, focusing on learning from each person I work with. I’m still doing this work manually, prepping visuals by hand. Here is an anonymous example from someone who gave me permission to share:
Yep there’s a lot going on there, and right now this work is fairly time-consuming. But it’s important. While my current process is not “scalable” from a business standpoint, I’m learning valuable insights — and gaining wisdom— that will help me move forward with confidence and sensitivity. I want to share a few key things I’ve been learning.
The conversation is half the magic
When I talk with patients, I interview them (usually over phone or video) and ask many questions to try to sort through the timeline of their life. I want to know when they tried certain treatments or interventions, when important life events happened, when their symptoms were at their worst, etc.
While my original motivation for setting up these calls was to get as many details as I could in a short amount of time, I’ve realized that this conversation itself is a vital part of the process. By the end of our discussion I hear a shift in people’s tone of voice, and they sound lighter somehow — almost on a high. Talking through their story has also helped people remember many more details than they would if they were just filling out a form. Here are some things patients have told me:
“Listening to people is one of the most important things. The healing process comes out of a process of trust. You can’t establish that in a 9-minute session with a general practitioner.”
“Having this conversation is really important — it’s hard for me to put it together otherwise.”
“Doing this process myself would be incredibly daunting. I don’t know that I would do it on my own. I am glad we talked because I don’t remember everything — anyone with memory problems would have a hard time with this.”
Active visual listening helps people feel heard and seen
Recently I attended and spoke at the Graphic Medicine conference, a discipline and community who use comics and other visual arts in healthcare. One of my favorite quotes from the event came from J.D. Lunt, an artist who has been working with the VA on a project that matches artists with veterans so that veterans can tell their story in comic format. (I purchased a small comic book about women veterans’ stories called A Whole Lifetime of Firsts — highly recommended!) In a session, J.D. said multiple times:
“One of the first steps to feeling heard is being seen.”
–JD Lunt, comic artist
A collaborator of J.D.’s, Kurt Schaffert, described his work with veterans as ‘visual active listening:’ when you take in someone’s story and visualize what you are hearing, it is a tight feedback loop that helps the person feel confident that you understand what they are saying. It’s the same principle I have often used in meetings, when I jump up to the whiteboard to take notes about what we are talking about; it helps everyone involved determine whether we are hearing each other correctly.
Recently I worked with a patient who sent me the following note after I sent a first draft of her timeline:
“I can’t tell you how much seeing this means to me. I honestly broke down and cried because I felt so seen in a way I haven’t for a while now.”
Visual listening works. And her reaction leads me to my next point.
Seeing your health story for the first time can be an intense experience
Sometimes I can be a little…clueless about other people’s emotions. It didn’t occur to me at first that when someone receives a visual representation of their entire health journey, that may be difficult for them emotionally. A few of the early patients I worked with never got back to me after I sent them a first draft of their timeline; it slowly dawned on me that their timeline may have brought up topics that are painful to face. For people who have spent a lifetime hiding their health issues (both physical and mental) from the world, finally being seen may feel more like an intrusion.
One thing I can do moving forward is help set expectations that this may be hard, and I could provide or recommend access to a mental health professional if they feel they need additional help processing their story.
Many patients have ‘given up’ and feel abandoned by our health system
I was struck a few months ago when three people told me, in the span of a few days, that they had lost all confidence in doctors and so were going to either take a break from the medical system or give up on it completely. These three people, all women, had what I would consider ‘invisible’ illnesses and symptoms: Endometriosis, Ehlers Danlos Syndrome, and an endocrine disorder. All have fought to get a proper diagnosis and to be believed by doctors, and all have been repeatedly demoralized and dismissed. One told me she has PTSD from dealing with our medical system, a phrase I have heard uttered multiple times recently.
It occurs to me that the key transgression on the part of doctors is a failure to listen, a breakdown in trust, and a stance of suspicion and mistrust — a failure to believe. This is emotionally damaging. Even if your doctor has a hard time effectively treating you, it’s important to feel that they believe and empathize with you, and that they are your partner on this journey. To a patient, knowing that you are not alone is already a step toward healing.
When I hear from patients that they have decided to give up, it makes me feel desperate to do something to help them. I want them to have hope and to believe that it’s possible to have a healthy partnership with their care team. I struggle with the limits of my own influence; I can listen to their story and make it visual, validating them and making them feel heard, but I can’t guarantee that their doctor will act the same way.
I am hopeful, though, and I know there are many talented, empathetic, amazing doctors out there who want to help. I have seen the benefits of making health stories visual, and I think this holds a lot of promise as a new model for patient-doctor communication.
If you or someone you know is interested in visualizing their health history, please reach out. You can learn more on the Pictal Health website. I would love to help, and I am taking on a limited number of clients between now and the end of the year.