Visualizing 15 Months of Chronic Pain

Tue, Jul 6, 2021

Have you ever thought about how stigmatized pain is? I know it’s stigmatized because my instinctual reaction to the idea of making this post was, “but I can’t tell people I have chronic pain!” Chronic pain is a bad thing we can’t actually prevent ourselves from experiencing, the perfect recipe for stigmatization.

I’ve had recurring pain in my legs, mostly at night, since I was a little kid. Back then, the pain would wake me in the middle of the night and I, in turn, would wake my parents. They would rub my legs, take me for barefoot walks on the cool hardwood floors of our house, and feed me one of the bananas we kept in the fruit bowl beside our refrigerator. These were lengthy, loving rituals that ultimately did little to resolve the pain, which gradually became more frequent and more severe. Doctors labeled the episodes “growing pains,” and I had no idea doctors were ever wrong. I was so convinced my leg pain was a universal childhood experience that a few years later, when I took to carrying around illicit ibuprofen everywhere I went (kids aren’t supposed to have ibuprofen) and realized other kids didn’t face the same predicament, I started telling people I had a low pain tolerance. This was the only way I could make sense of being so antagonized by something everyone supposedly experienced.

I’ve been carefully tracking my leg pain for years. I was tracking it, but apparently not talking about it. Recently, I’ve brought up my pain in conversation with friends and been surprised to find out some of the people closest to me had no idea I have chronic pain. It’s never felt natural to talk about because it’s not an important part of how I define myself. It’s not even very interesting! It just is.

So why am I posting about this? Well, I had 3 goals in creating this data journal:

  • To understand myself better
  • To make some beautiful visualizations (and by beautiful, I mean engaging or illuminating or thought-provoking or striking)
  • To do my own tiny part to increase visibility for disabled and chronically ill women (after all, isn’t data visualization all about “seeing” things you wouldn’t otherwise be able to see?)

Pain isn’t an important part of how I define myself, but it is a part of my everyday life. I’ve had to think about it since the days when I was hiding ibuprofen from my teachers in my Harry Potter backpack. I now have a diagnosis that explains my pain, a care team that takes my pain seriously, a treatment plan, and very effective management strategies that keep my pain in check. But it was a lonnnnng time coming! Many people never get here.

I am White, small-bodied, and have immense access and fluency in navigating medical spaces because of my education, family, and work. These facts probably played a big part in why I was ultimately able to receive adequate and affirming treatment. People literally die because their pain is dismissed or disbelieved. Thousands more suffer unnecessarily, often for years. Dismissal of pain is often a manifestation of racism, sexism, and/or fat-phobia, among other prejudices, with devastating consequences.

Pain is a justice issue, and it’s one we should start talking about.

So, here’s to seeing something we otherwise wouldn’t, 15 months of chronic pain:

This is a somewhat abstract rendering, but it is real data. The top left of the plot shows data from December 2019, with days following from left to right and then top to bottom like a calendar, with each row showing roughly one month. Every point is a day I had pain – the bigger the point, the more pain that day, the redder the point, the more total pain in the week leading up to and including that day. The visualization ends in March 2021.

My other ask of you, besides talking about pain, is this: if you have pain, chronic or acute, now or later, be the first person to believe yourself.

P.S. As usual, here’s a link to download my code.
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