Artist Statement: I am an artist, health advocate and podcaster who has lived with complex chronic illness, and the chronic uncertainty that comes along with it, for more than two decades. As someone juggling multiple invisible illnesses, much of my work has been about visibility, and making visible what has previously been unseen. In my attempts to seek diagnoses and validation, I have used many of the quantitative symptom tracking apps that have been available for iOS in recent years. The Instagram account, @bimpsegetsweird, is my attempt at qualitative self tracking to better capture my quality of life, which has too often been underrepresented in other self tracking data.
This project was produced for the 2016 Stanford Medicine X ePatient Storyteller Track.
I am an ePatient with more medical conditions and symptoms than I, or anyone else for that matter, know what to do with. Over the years, as those symptoms have grown and changed, keeping track of and proving their existence to other people is something that has been quite a challenge. In the last five years, I have used a number of different iOS apps to try and make sense of an otherwise nonsensical bodily experience.
The result of this Instagram project is not hard data, though I've been collecting that too. This project cannot be transposed into any charts or graphs, but I have those too! The images I have created reflect my subjective experience of my time in my body at a time where I'm dealing with more chronic headaches and cognitive difficulty than usual.
In addition to Chronic Migraine, I have complex history with many health issues secondary to Ehlers-Danlos Syndrome (EDS) hypermobility type, including Postural Orthostatic Tachycardia Syndrome (POTS) and Fibromyalgia. It's a lot to live with, and affects every aspect of my life. Due to the very complex, invisible and poorly understood nature of these conditions, it has been very challenging to communicate with my providers about my experience of my body. This is further complicated by a long history of broken trust and trauma from repeated negative experiences in the medical setting.
I am often asked, both by tracking apps and by my healthcare providers to rate my pain on a scale of 1-10. This is trackable, sure, but a number doesn't tell you much about how these symptoms actually affect my life. While data about the frequency and severity of my migraines are of primary importance to my doctors and insurance company, it is my quality of life with which I am most concerned.
I can tell you that I have had 52 migraines this summer, and you may be able to infer some things about my quality of life from that. But I'd like you to really understand those things on a visceral and practical level. Based on the interesting responses I have gotten to this project so far, it seems that I have succeeded.
Many symptom trackers I have used are structured for single daily entries, but my complex chronic condition is highly variable. This daily, sometimes hourly variability is an aspect that many symptom trackers fail to capture. With this project, I have tried to integrate the wide variety of symptoms and my attempts at achieving some sick-life balance (it's like work-life balance, but my chronic illness is a full time job).
I produce each image by starting with the Snapchat selfie camera, sometimes purposefully breaking the filters to create a distorted effect. I then use a combination of several different apps and filters to experiment with manipulating the photo, until I get a result that feels representative of my current physical and/or emotional state. All of the images are created on the iPhone 6S.
For the duration of the summer, I created 2-4 images a day as my condition varied, and posted them to Instagram. Now that this component for MedX is drawing to a close, I'm usually taking only 1 or 2. Sometimes I write about what is going on, and sometimes I don't. If my brain is not in a place to string words together, I will often only use hashtags.
What you see in the gallery are not necessarily literal representations of sensations, though some approximate my physical experience very closely. Instead the images are the result of experimenting with the tools at my disposal until I make something that ~feels~ true—a real nightmare for you data driven folks, I know.
I experiment with filters and other photo manipulation techniques, combining elements such as light, color, texture, pose and expression to create images that are a very different kind of selfie.
The much maligned selfie can be considered part of the rich tradition of self identification by artists. We have self portraits by everyone from Leonardo DaVinci to Pablo Picasso to Frida Kahlo to Chuck Close to my peers in the patient community using the technology at their fingertips to share their own experience.
Some people might scoff that there is a great deal of difference between what we create with our smartphones and those examples, and in many ways, those people are correct. Because of my chronic pain and fatigue, it is very difficult to sit or stand at an easel—or sit hunched over a canvas on the couch or floor, as I've always been more inclined to do. Unlike many artists, I have not been able to find a way to continue working in a physical medium at this stage in my life and disabilities.
The aforementioned Kahlo and Close, in particular, are noted as artists with disabilities for their adaptive painting methods. This is my adaptation—at least for now. I spend a great deal of time laying down in a dark room with one eye closed, looking at my phone because it's all my brain can handle at that time. This project grew out of those limitations and a desire to start making visual art again.
Returning to a daily creative practice, even while dealing with symptoms that make my world so small, has been a lifesaver.
In some ways this project has been as much about affirming my own experience to myself, if not more so, than it is about communicating with anyone else. There is this strange phenomenon on my "good" days that makes me doubt if my experience of the bad ones was, in fact, real. This has come from years of having the validity of my symptoms doubted by various doctors and those around around me, which is a difficult thing not to internalize.
This Imposter Syndrome of the chronic illness experience is something that has come up very often, as a seemingly common experience, in my conversations with fellow patients, both on and off the podcast.
It has been quite interesting and validating to look back at my summer, which has been a particularly difficult one symptom-wise, and see my experience represented in a tangible, visual way over that period of time.
One of the most fascinating aspects of this project has been the response I've gotten to the project so far. Viewers have inferred meanings of their own from the images I've created, that never would have occurred to me. Sometimes the images seem to upset other people more than they upsets me—and I'm the person who actually lives with this every day.
One area in which I was not as successful as I would have liked, is how I captured the good stuff. I am far more likely to create an image while I'm laying down in the dark with one eye open, or up until 5am with painsomnia, than I am to create an image while I'm enjoying a "good" day. I am generally too busy trying to live during those moments that I did not capture the balance of good stuff I have in my life. Often the only trace of a good day are the posts from subsequent days that document my protracted recovery from the increased activity. As the project wore on, I accounted for the good stuff slightly more by briefly pausing to take a photo in an in-between moment, and work on manipulating and posting it later.
I will keep posting—though with less rigor— to @bimpsegetsweird, so you can continue to follow along with the project there. To see other examples of these themes, as I have explored them in my artwork, my portfolio can be viewed on bimpse.com. Last year my painting, Syndrome, was published in the Fall 2015 issue of The Intima: A Journal of Narrative Medicine.
🔍 Self tracking during the Instagram project has concurrently been conducted using Migraine Buddy and Clue iOS apps. Each image featured in the gallery is accompanied by data from Migraine Buddy about that day's migraine pain, and the original caption from Instagram. Some of the images have added commentary from me at the time of curation.
♿️ A note on accessibility: I hope at some point to have image descriptions for each entry—at least for the gallery. Due to my own disabilities, I am unable to write image descriptions at this time. If you'd like to help with that, I'd love it, and you can use the Contact page to get in touch!