When I was 15 I started experiencing mysterious symptoms. I had intense fatigue, painful stomach cramps, and was losing weight rapidly. I spent an entire year searching for a diagnosis with my doctor, sure that identifying the disease would fix my problems. But six years after I got one I was still no better off, and my doctor was proposing surgical removal of my entire colon.
I have Crohn’s Disease, and I will always have it. It took me years of marching from medication to medication to finally realize that every decision I make is a health decision, and I will have to deal with it for as long as I live.
The problem with diagnoses in the context of chronic illness is the tunnel vision they bring in favor of the dictionary definition of the disease. I have constantly discussed my mind-numbing fatigue and sleep issues with my doctors because those symptoms get in the way of my life more than anything else. They are daily hurdles that kept me from feeling normal. However, in all this time I have never succeeded at turning my gastroenterologists’ focus away from my ‘textbook’ Crohn’s symptoms to the ones that troubled me most. Treating Crohn’s with my gastroenterologist is always a matter of tracking certain numbers in my blood tests, reporting my stomach cramps, and trying approved medications. It doesn’t matter if those things have nothing to do with the problems I come in for, they are simply the Steps You Take to treat Crohn’s.
I’ve realized that I am the only person who will prioritize the symptoms I care about, and I need to be responsible for solving them. And as it turns out, I’m also the foremost expert on my illness. Because of how differently two people with the same chronic illness can react to the same treatments and triggers, as well as how different their set of symptoms can be, each patient has almost a unique illness unto themselves. I have tried medications that put other Crohn’s patients into remission and found that they actually worsened my condition. It’s a coin toss whether I’ll share most of my worst symptoms with another “Crohnie”. And the same is true for many autoimmune or invisible illnesses.
At one point I was frustrated by a particular medication that was ping-ponging me back and forth between its side effects and my Crohn’s symptoms. I tried, clumsily, to explain the rollercoaster I was experiencing without much success. At the time I was getting my degree in graphic design, so finally I opened Adobe Illustrator, drew a graph of the situation, and emailed my gastroenterologist to show him what I was feeling:
Immediately we started looking at options for solving the problem. Not only did it put my doctor and me on the same page, but it also forced me to codify and understand the problem myself. Good visuals can make confusing, complicated issues concrete. They stick in people’s heads and help communication immensely. The graph above looks very simple and obvious, and that’s brilliant because before I drew it everything was a confusing mess in my head.
I realized I needed a tool that could visualize my health history, from my perspective, so I could always understand and communicate my situation clearly. I wanted a website or app and found plenty when I searched, even some specifically made for Crohn’s, but all of them had the same tunnel vision on textbook symptoms. They told you what to track and I didn’t care about any of it. So I sat down to design one that would give me control. I called it Flaredown.
The idea is to provide people a tool for manipulating and playing with their health data in a visual way, so you can explore the relationships between your symptoms and the multitude of things that affect them. Does yoga help steady shaking limbs? Does methotrexate cause worse side effects than the symptoms it treats? Can caffeine help or hurt migraines? The system lets users create new symptoms and treatments if they don’t already exist, and generates reports specifically for doctors.
I’m not a typical patient–in fact there is no typical patient. So while I was building Flaredown I found other people with a variety of chronic conditions and surveyed them. I have always kept my own council in terms of my illness, but I quickly found many other patients on Facebook groups and forums, talking about their experiences. I found “spoonies” on Tumblr and Twitter who were also frustrated at being left in the dark with their symptoms, and wanted a tool like I did. I found feedback and willing beta testers and learned some important things about building tools for chronic conditions along the way:
1. You have to put patients in control. Really in control. Saying “select from this list of doctor-approved symptoms” assumes that you know which problems the patient is facing. Because I was primarily concerned with one condition, the first version of Flaredown tracked each illness independently and provided some specific questions up front. But when we surveyed users the vast majority had multiple conditions (up to 15!) and could not ascribe symptoms to a specific one. We listened to their feedback and reworked our system so that it decoupled conditions from symptoms and let users track them in any combination they liked.
2. Any tool should mirror the real life experience of being ill. Our first version also set out to create a beautiful guided experience, assuming the patient would go through their “check-in” once toward the end of the day and fill everything in. It was a great flow for that specific use case, but in reality people encounter their illness throughout the day. When their migraine clears up and they wonder if it was because of the cup of coffee they just had, they want to log that correlation right then and there.
3. Be opinionated. If you’ve ever seen a dashboard like Google Analytics, you know that a tool can be too open-ended. Flaredown’s basic structure isn’t technically limited to chronic illness so at first I designed it as a general purpose health tracker. But people didn’t know what to use it for or how to use it. Redesigning it to focus on chronic illness made the use cases obvious, and let us create a visualization structured to show the data most patients will want to see by default. That makes it clear how the tool works, and how it can benefit me as a user.
What gets me excited about the future is the potential for good data to change the way we treat chronic illness. Let’s put patients in control of a database of information that can be used to find patterns and solve our problems.
Will we be able to identify or even predict flare-ups? Recommend treatments by comparing you to other users? Test natural remedies to see which have real merit and which are bunk? We desperately need to investigate from the patient’s perspective to solve patient problems, instead of limiting ourselves to manipulating the numbers on the results of blood tests.
I think we’ll get there someday soon, and patients will lead the way.