Last week, I had the pleasure of connecting with Katie McCurdy through my work at The Patient Revolution, and she and I talked about her health visualization tool, Pictal. (That interview can be found on the Patient Revolution blog.) From the article:
“Pictal is a set of worksheets that patients can use to create a health history timeline and show how symptoms look and feel on their body. “As a patient, I have extensively used timelines to efficiently talk about my own health history, and I have also used drawings on body shapes to show my symptoms. I decided to create worksheets that would help other patients could use to do the same.” People can download the worksheets and use provided visuals, or create their own interpretations, to map the symptoms they are feeling.”
While we were on the phone, we talked about our respective patient journeys and I was struck by how, in the case of life with chronic illness, pictures really do convey thousands of words. I told Katie that I was going to take a crack at using her worksheet to illustrate a moment or two from my diabetes experience, and last night I decided to Pictal a low blood sugar:
Low blood sugars make me feel like I’m having an out of body experience while still trapped in my body. The blue lines represent the waves of confusion that wash over me, and how they can make my body tremble. The weights around my ankles represent the heavy, sluggish feeling that settles into my limbs, making movement feel uncomfortable and my whole body weak. The snow flake on my head is the chill that comes over my mental function, rendering the simplest tasks (open mouth. insert glucose tabs. chew.) impossible.
And the fire in my chest is the panic, the “what if I can’t correct this fast enough” panic that is most palatable in the middle of the night, or when I’m alone with my children, or when I feel the threat of loss of consciousness lapping at my synapses.
All of these symptoms are relatively invisible, or at least hard to detect.
Drawing this out was a different experience. I’m used to writing, or talking, or attempting poetic or photographic explanations of diabetes moments. I’m comfortable with words. But using images helped me streamline my thoughts a bit, in a way I wasn’t accustomed to. I wish I’d done this when I was a little kid, to help explain to my mother how diabetes felt. I wish I’d seen her drawings, as it would have opened my eyes even then to the teamwork that diabetes can bring out in a family.
I’ve thought about what I’d like to Pictal next: a high blood sugar? A low during exercise? Or different, non-blood sugar events, like what it feels like to get an off-goal A1C result. Or what complications, or the threat of them, feels like. Or what it’s like to conceptualize “forever” when it comes to living with diabetes.
This tool has opened my eyes to a different way of seeing my health, by actually seeing my health.