Visualizing the Long Covid experience

As a highly allergic and reactive person with multiple autoimmune conditions, I am likely at risk for Long Covid. I’ve closely followed the news about this mysterious and pervasive new condition and read about its debilitating symptoms. But until now, I hadn’t personally known anyone with Long Covid.

Recently, through my startup Pictal Health, I had a chance to help a Covid long-hauler create visuals to represent her experience. I’ve done this with many others, often those with long, complex health journeys that are difficult to ‘see’ and recount. As I got started with Sophie (not her real name), I wondered: what does Long Covid really look like? And is there value in visualizing a patient’s journey for such a recent condition, even if it only spans a year or two?

Sophie was a brilliant scientist and researcher on a fast career track when she was suddenly sidelined by Covid in March 2020. Since that time, for over two years now, she has put most of her precious energy into managing her symptoms while continuing to work and attend many medical appointments.

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.

As we talked, Sophie mentioned that certain symptoms commonly kick off a flare, and others would follow in a cascade. First she would experience ringing in her ears, then she would start struggling with cognitive issues, then her chest pain/nausea/breathlessess would kick in, and finally she would have to lie down — by that time, as she put it, ‘my battery is empty and I need to rest my mind and body.’

It’s simple, but illustrative: this is what Sophie’s flares look like as they morph into full-blown fatigue. It made me wonder how other Long Covid patients’ flares unfold and how much they might deviate from Sophie’s experience.

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.

Since Sophie was basically healthy her whole life until March 2020, we condensed the canvas to dedicate most of the space to recent history.

The exact timeline of events was especially important to get right, especially around March 2020 when she first had Covid. She wanted to be clear that her symptoms had only appeared since then; any doubt or confusion could result in wasted time and energy following other paths. Since Long Covid still falls into the category of health conditions that are hard to diagnose and little-understood, Sophie wanted to prevent skepticism.

We used a wavy line to show how her symptoms are always ‘up and down.’

The visual made it clear that her 3rd vaccination dose seemed to correlate with an episode of pericarditis and a flare that has been mostly continuous since last December. Sophie already knew this, but the visual helped make it apparent to others.

And since last December, she’s been adding treatments to her regimen; but it’s clear from the visuals that nothing has been significantly helping.

I noticed that Sophie’s timeline was especially heavy on diagnostic testing and procedures. These tend to come in waves (often scheduled at the same time) and are frequently repeated to confirm the results. The repeated testing is something I haven’t seen as much in the past, and I wasn’t always sure how to represent it visually.

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.

As I have seen with other clients, Sophie seemed excited and amazed to see her whole journey in one place. Her journals and detailed symptom tracking were an important tool for her, but she hadn’t previously been able to see her story plotted over time or her symptoms on the shape of a body. So, we confirmed that the visual timeline and symptom map were helpful for Long Covid.

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.