X marks the symptom

White aida/cross-stitch fabric. At the top, in capital letters are various words, each stitched in a different colour of thread: berathlessness (dark blue) peeing (yellow) pain (red) nausea (lime green) depression (black) dizziness (pale blue) bloatedness (dark green) twitching (orange) exhaustion (purple) palpitations (pink) brain-fog (grey). The words are surrounded by a rectangular frame in a chequerboard pattern using these same colours. Underneath, stitched in white thread, are the months and year from June '21 to November '21. Underneath June 21 are two columns of stitches (with some gaps) in colours that match some of the words at the top.

I recently attended an online event (you can actually watch the presentations if you click on that link) run by Stitching Together, about participatory textile-making projects. As someone who loves textiles and crafts in general, this event was always going to appeal to me, but it really was excellent, with so many wonderful projects discussed and expertise shared. I left the event brimming with ideas of how to use visual arts and crafts to think about and communicate experiences of heart disease. [Fair warning: I may be recruiting makers from among you before this PhD is finished!]

One project that got me thinking was the American-run Stitching the Situation, where people volunteer to cross-stitch the US COVID-19 statistics (positive tests in red, deaths in blue) for one particular date. As well as being visually very impactful to viewers, many of the participants spoke of the deep impact of representing each individual case or death with a concrete, carefully stitched X.

Taking this idea of cross-stitch being used to represent health statistics, I came up with a (smaller scale and far more personal) project to record, by daily colour-coded cross-stitch, the symptoms and side effects I experience as a result of living with heart failure. I made a list of the symptoms I most frequently experience (of course I’ve now thought of others, like THIRST, that I should have included, but c’est la vie) and assigned each one a colour. I stitched these at the top of my fabric and stitched the names of the next 12 months underneath, with space to record the symptoms I experience in each day of those months. The image I’ve shared here shows June 1st and 2nd and you can see that on June 2nd, for example, I experienced dizziness, breathlessness and depression. As the year progresses, I’m hoping the colourful stitches give a good overview of the symptoms I experience and whether these come in waves or are randomly distributed across the year. I’m also hoping they look pretty!

I’m only two days in and am already wondering whether keeping this up for a year is feasible, questioning the symptoms I’ve chosen to represent, and wondering what constitutes experiencing each of these symptoms. Yesterday I just had one very brief dizzy spell and it felt like a bit of an overreaction to stitch an X for that fleeting moment. I was (as usual) very tired from 5pm onwards yesterday, but was I exhausted? I decided not to add the purple X yesterday, but I might just as easily have decided otherwise. So much doubt so early on, but all these questions are a good outcome in themselves, I guess, and I will keep reminding myself that this project serves no higher or more official purpose than to give me a new way to think about, record and share my symptoms.

Do you keep a record of your symptoms? Who do you keep the record for? Where and how do you keep it?

You might also like: Heart Haiku Issue 4: Symptoms

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