Visualizing the Long Covid experience

Visualizing symptoms

First, we put together a symptom diagram. Sophie had all the classic Long Covid symptoms. As always, it was helpful to lay them out on the shape of a body, to see her how her various symptoms — many of them invisible — felt to her.

Visual health history timeline

Finally, we put together a holistic timeline of events to make her recent health journey more understandable. We filled in dates of procedures, tests, and symptom flares by referencing Sophie’s handwritten notes, which she carried around with her from appointment to appointment. Here’s the bird’s eye view; we’ll zoom in on a few details below.

Takeaways for visualizing Long Covid

  • Even for a relatively short health journey, there was a lot of data to manage. The visual put it all in one spot and helped clarify patterns that would be hard to see otherwise.
  • It’s important to get the specific order of events exactly right — how symptoms unfolded, when tests and procedures were done, etc. This can help prevent providers trust that it really is Long Covid.
  • The visual difference between ‘before’ and ‘after’ Covid is striking. While focusing on more recent health history, it’s important to make that before-after view available to patients and providers.
  • Finding a way to visualize repeat testing could help clean up the visual and make it easier to absorb.

What’s next for Sophie?

Life is not the same as it was prior to March 2020. Sophie has to take frequent naps and pace herself, but she’s still able to work and contribute to the Long Covid community. She has a burning intensity and innate optimism that keep her moving forward, as she continues to work with her doctors to try to get to the bottom of her symptoms.

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Katie McCurdy

Katie McCurdy

Designer and researcher focusing on healthcare; founder of Pictal Health; autoimmune patient; chocolate-eater. katiemccurdy.com and pictalhealth.com