When Data Renders Invisible Illnesses Visible
By: Katie Mccurdy
Tags: Healthcare Technology, Design, Healthcare, Data Visualization, Data Humanism

When Data Renders Invisible Illnesses Visible

How ‘small’ data visualization helps complex patients be heard, seen, and believed

Imagine your body starting to fall apart. You have heart palpitations, headaches, recurrent infections, painful fingers and toes, crippling brain fog, and body aches. You’ve become sensitive to light and have started wearing sunglasses indoors. Every day seems to bring a new symptom, and your doctors can’t figure out what’s going on. Worst of all, many doctors — and even some of your close friends and family — act as though you’re just trying to get attention or that it’s all in your head.

When you finally get an appointment with the specialist you’ve been waiting for, you want to be sure to use the time well. How can you tell your complicated story and make sure the doctor understands and believes you?

An All Too Common Struggle

This situation may sound outlandish, but it’s more common than you think. There are 25–30 million people in the United States alone with “rare” diseases, at least 15 million with autoimmune diseases, 25 million with Irritable Bowel Syndrome, 10 million with Fibromyalgia, and the list goes on. Many (if not most) of these patients suffer from mysterious, rare or complicated conditions that can cause symptoms like the ones listed above. They face a daunting challenge: not only to manage their symptoms and health, but to help their family and doctors truly understand what they are going through.

Our culture of doctor appointments does not set them up for success. At an average of 15–20 minutes per visit, patients do not have enough time to tell a complex story. Since patients generally aren’t asked to prepare before their appointment, their stories come out naturally disjointed and nonlinear, and it’s hard for them to remember everything they wanted to say. And given we humans can only keep about four pieces of information (or the last 30 seconds of what we’ve heard) in our heads at any given time, doctors listening to a complex story are bound to lose track of some of the details.

When the Data is Personal

I care about this topic because I too am a lifelong autoimmune patient who experiences frequent mysterious symptoms. Over the years, I’ve struggled to tell my story and get answers during high-pressure appointments with expensive doctors. I know firsthand how challenging this process can be.

I’m also a User Experience Designer with a penchant for unraveling complex problems and translating information into clear visuals.

As I was preparing for an appointment many years ago, I realized that one of the most important — and most invisible — things I needed to communicate was my own timeline of events: how my symptoms had progressed over the years, what treatments I had already tried, what diagnoses and tests I’d had, etc. So I started dabbling with visualizing my whole health history. Below is a very early version from 2012 — the peach color represents ‘bad guts’ and blue is muscle weakness; higher on the Y-axis indicated ‘felt better’ and lower indicated ‘felt worse.’ I have since changed this format, but I wanted to share this early exploration with you: