I was thinking about it the other day, and I think it is finally time to tell a story. For those of you who don't know me, I'm Open Care's ethnographer --- I have been reading everyone's stories, growing increasingly more inspired, and making sure that the important connections you all are making do not get lost. A lot of the time, ethnographers consider themselves to be research instruments -- so maybe think of me as another technology, like the platform itself or the cool visualisations the research team has been producing
But it has become increasingly difficult for me to feel I am fulfilliing my role as an ethnographer, because one of the central tenets of ethnographic practice is participant-observation. Now, I've certainly done plenty of observing. But I think I have been dropping the ball slightly on the participant part! Talking about my own positionality is important to making sure that I am filtering everyone else's through lenses that don't distort them.
So here's one of my Open Care stories.
I have two related questions: how do we care for people in our communities who aren't visibly ill, yet whose lives are made more difficult by invisible illnesses keeping them from living life the way they want to? And how can we look outside current medical frameworks to help people whose illnesses haven't been successfully helped by existing medical frameworks? This issue of invisible illness particularly affects labor, which as many of you have noted, is both a crucial part of what it means to be human (working on things that enrich us, feeling like we have autonomy and are masters of our own destiny) but also something that can cause us pain (when we have to do jobs we don't like, or can't find employment in this rapidly changing world).
These questions hit particularly close to home for me. I suffer from vestibular migraines (also called migraine-associated vertigo). This means that about three out of seven days a week, I feel dizzy for part or all of the day. If you've ever felt motion sick, you'll be able to understand the feeling, although it's difficult to describe if you haven't. The way I often laughingly put it: It's like being drunk, but without the fun parts. During these episodes, I am very nauseated and is really unpleasant to look at screens, read, or generally do anything except stare at a wall. Sometimes the episodes will be extreme: like the whole world is spinning, and I can't tell which way is up.
When this first started happening, about a year ago, it was terrifying. I would panic, which would make it much worse.
In the first six months, I tried everything. I went to my GP, who referred me to an Ear, Nose, and Throat specialist (ENT). I had to wait months to see her, and she ran all kinds of tests on me: I was put in a dark room, spun around in a chair, water was ran through my ears. Inconclusive--- I had inner ear damage, yet my body was correcting for it. I was referred on to a neurologist (another long waiting period), who told me that vertigo is really hard to do anything about. She diagnosed me with vestibular migraines, and then proceeded to try out 5 separate drugs over 5 months. For weeks I'd try something new, have terrible side effects, without improvement. I learned that most drugs have side effects, and a lot of drugs are used to treat secondary conditions but the primary use has serious effects (they tried anti-depressants, which can help but made me feel awful, for example).
Finally, after 2 trips to the emergency room in 2 months, she recommended I try a blood pressure medication. That was the last straw for me---- I looked at the bottle, read the side effects (I already had low blood pressure--- so the side effects were, you won't believe it, DIZZINESS). I decided to give up on medication for a while. I want to add here that most of this journey took place in the USA, so the medical bills were beginning to pile up.
So I turned to the internet, and found many people suffering like me, without help from medication, and with the same exact symptoms. I don't have any wonder cure to report here---- but it was nice to know that other people were there, and were also frustrated by the medical system. I also took solace in my family in the times I was able to see them, who would come and sit with me when an episode hit. Talking to others, taking my mind off of it, helped.
But one of the hardest things was not wanting to tell people, because I didn't want them to see me differently or treat me like I was infirm. I didn't want to lose my job, and I didn't want my PhD supervisors to stop pushing me and giving me new opportunities. I felt that short-term illnesses people are compassionate about, but when there is no end in sight, eventually your lowered performance is no longer a case for compassion, regardless of the cause. I empathised with this position, knowing how frustrating it would be to have a colleague or a friend who disappeared for days at a time. Perhaps most of all, I didn't want anyone to treat me like I was disabled. I didn't want anyone to treat me differently at all, and I wanted their expectations of me to remain high.
On the other hand, my illness was invisible. No one could see my suffering, so no one knew to reach out and help. Sometimes we do need to be treated differently, and sometimes we just can't go it alone. I told my supervisor at last, and told him that I wanted to move back to the UK --- my home, and a place which, though the medical system was struggling, had universal healthcare and wouldn't charge me to get the help I could need in the future. I wouldn't have to be scared to go to the emergency room after a day of excruciating pain and nausea. So he ended up supporting me immensely with my goal of transferring my PhD, and I'm moving back soon.
I've started down a new path, now. I don't know if it will be helpful, but I'm starting to acknowledge that I might never be "cured," and that maybe that rhetoric ignores the way that most people with illnesses end up living their lives despite it, rather than conquering it. I think there are a lot of us out there learning how to live in peace with our unruly bodies, and I have found a lot of support and solidarity from friends, who after I confide in them, end up telling me secrets of their own. One has IBS, and has near-constant stomach problems. She told me a story: I don't think of myself as disabled, I think of my body as a Maserati. Sure, I have to be really careful about what I fill myself up with, but that's because my body is a luxury car! I laughed when she said it, and I carry that story with me. I am filling up my arsenal with other stories of resilience in spite of medical systems which offer no answers, or the wrong ones, and in spite of bodies that don't behave.
I have also learned to be mindful of the fact that other people around me are probably struggling with something they're not saying. I don't give angry looks at people on the tube who sit in priority seats---- what do I know about their conditions? Instead of being upset with friends who cancel plans, or co-workers who seem to show up less, I give them the benefit of the doubt. Who knows what they're dealing with.
All in all, I see the stories I have heard as an ethnographer in past projects on technology and health and social care with new eyes, and I feel more strongly about projects to build social solidarity and informal networks more than ever. I for one will continue to do research and publish on these issues, and help design better systems. People are the answer. Keep up the good work, everyone