Medical Care Needs More Space for Patient Narratives
I want medicine to meet me where I am, not where it wants me to be.
What I didn’t know then, but know now, is that the tests they use to identify bacteria in the urine are insufficiently sensitive to evidence the bugs buried deep in the bladder wall. So even if the infection is there, the tests may say something different. Time and time again, I returned to that Edwardian house—a different doctor every time, but always the same response: no evidence, no illness. Some of them even implied that I was imagining my pain. I felt that they were telling me that I failed to understand the very basic biology of my own body and that I was behaving irresponsibly. That I was gambling with a precious and finite resource—the antibiotic—for the sake of my own delusions.
Things changed in my early twenties. I was talking to my friend who I had already known for years. We’ve known each other since we were teenagers, and for almost all that time we’ve shared an experience of illness. She told me about how, since she was seventeen, she’d been in a state of near-constant sickness. Unlike me, she had advocated for herself, investigated her symptoms, and learned her condition’s name, and sitting in her kitchen she gave me the new diagnosis she had discovered for herself: “chronic urinary tract infection.” And it felt just like that, a gift. Simultaneously stabilizing and revelatory, it both gave me a new foundation, a new structure on top of which I could piece together years of fractured experience, and also shifted the ground beneath my feet.
UTIs are an infection of the kidneys, urethra, bladder, or ureters. They’re much more common in women than in men, and they are very common. Around one in every two women will get a UTI at some point in her life. For most, it will be short-lived and relatively easily cleared up with routine antibiotics. But for the unlucky, like me and my friend, the first round of treatment does little to resolve the infection. The bacteria embed themselves in the lining of the bladder, and symptoms persist or recur for months, years, or even decades.
For me, the pain of a UTI is not just acute but chronic too. I’ve been relatively lucky. Either one of the many treatments I’ve tried happened to work, or something else changed, and the frequency and intensity of recurring infections has lessened. But for those not so lucky, and despite their mundane reputation, UTIs have the capacity to ruin lives.
My story is about pain, about chronic illness, and about medical misogyny. But it’s also a story about evidence. Medicine is reliant on certain types of evidence—the kind made in laboratories, the randomized controlled trial, the quantifiable, the objective. There are good reasons for this, but this reliance narrows the scope of possibility. It narrows the field of interest for doctors and can render patient voices less important than the data their bodies produce.
There is little space in medicine for testimonials, stories, and the subjective. How did this happen? How does this problem of evidence affect people living with messy and complicated conditions, especially ones that defy easy diagnoses like chronic UTIs? And what might an altered, alternative version of medicine look like? My experience was now a window into a problem with medicine writ large.
I am, by training and profession, a historian. More precisely, I’m a historian of medicine and health care. Medicine tells its own stories about itself—tales of triumphal, uninterrupted progress—but the job of the historian is to tell a different kind of story: to investigate power, privilege, and pain, to find the origin points of seemingly timeless truths, and to use the past to better understand the present.
In medicine today, data is everything. If you go to your doctor because you’re feeling tired, she’ll listen to your description of your symptoms. You’ll talk together, perhaps only briefly, about what’s wrong and about how you feel. But to make a diagnosis, she’ll send for tests. She’ll draw your blood, take your temperature, maybe refer you to the hospital for a CT scan. Your words might not have been enough. But this hasn’t always been the case.
I’ve sat in archives, mostly in the basements of still-functioning hospitals, turning the fractured pages of books filled with the cursive loops of doctors’ descriptions of the patients under their care. There is everything you might expect—accounts of pain, sites of discomfort, seeping bodily fluids, and possible causes or cures. But these notes made by doctors from the eighteenth century and before are also full of sick people’s words. The horses they kept, the journeys they took, the friends they had, the husbands, wives, and children that inhabited their homes. Lengthy accounts of lives, feelings, opinions, and experiences. The testimonial was the most important diagnostic tool, and, as a result, the power dynamic between doctor and patient was very different from how it is today.
This wasn’t just because the relevant data wasn’t available then; it’s because something very fundamental about medicine has changed since the nineteenth century. Health and disease shifted from being things very specific to the individual person to being things that could be generalized, standardized, and quantified.
Things like body temperature, heart rate, and eventually RCTs gradually replaced the patient’s own words and experiences. And of course, we all have immensely benefited from this shift. Vaccines, cancer therapies, antibiotics, and treatments for HIV have all been developed using this “gold standard” of empirical investigation. But, one of the fundamental flaws of modern medicine is its frequent failure to see beyond the data. To see the things that the data does not, or cannot, represent.
In my case, the evidence my doctors needed or expected was often missing or inadequate, and sometimes it contradicted the evidence of my experience. And my experience is hardly unique. Chronic UTIs are one of many messy and complicated conditions that defy easy diagnosis, like chronic Lyme disease, endometriosis, and CFS/ME. Diseases that also, conveniently, mostly affect women. Some things don’t lend themselves well to double-blind trials, some sicknesses aren’t adequately represented by numbers, and research resources are distributed in such a way that they privilege conditions that affect white, cis-male bodies.
To see the things that the data does not, or cannot, represent.
You don’t need to be a historian of medicine to be able to turn a critical eye toward health care and the myths it makes about itself. But in my case, it helped. Thinking about my own illness in these terms—of mythmaking, power, and evidence—radicalizedme.
Rather than seeing my repeated visits to the GP in search of pain relief, in search of a diagnosis, and in search of care as a series of failed interactions between me and indifferent doctors, or a fundamental flaw in my own body and biology. A fundamental mismatch between what I needed from medicine, and what medicine needed from me.
I learned how to be a better patient. I went to university and came back to live in the city I’m from—but in a new place this time, with a new GP. I sat in a new waiting room, very similar to the one I frequented before, but now armed with a new script. I asked for my urine sample to be sent away for testing, explaining that I lived with recurrent UTIs and needed to be taken seriously. I asked for seven, not three, days of trimethoprim—not nitrofurantoin, as that antibiotic makes me sick. I was older, more confident, and angrier. I knew how to say the right things, draw attention to the right details, and finely tune the consultation to ensure I went away with the right outcome. I tried to do just the right amount of research. Just enough to sound knowledgeable and reasonable but not so much that I might be accused of self-diagnosing, seeking answers from “Dr Google,” or presuming to do the doctor’s job for them.
I have changed a great deal since I got my first UTI. But I shouldn’t have had to moldmyself to suit a system not made for me. Because even if I play the perfect part, I cannot give medicine what it wants. All I can do is tell my doctors about my pain, my frustration, and tell them my story of my illness—offer them my own patient narrative. If they are unable to do anything with that information, to provide the care I seek and require and deserve, then they are the ones who should adapt.
But I don’t want doctors to just listen to me better; I want them to be able to use what I say to make me better. I want an altered, alternative version of medicine. One that is richer, baggier, and capable of incorporating all that makes me both well and ill into what doctors do and how they think. I want more space for stories. I want medicine to meet me where I am, not where it wants me to be.
Agnes Arnold-Forster is a writer and historian of medicine, healthcare, and the emotions. Her work has appeared in the Times Literary Supplement, History Today, Time Magazine, the Washington Post, The Independent, The Guardian, and elsewhere. Her first book, a biography of nostalgia, is being published by Picador in 2023. She lives in London.