IMMUNOLOGIST, UNCLASSIFIED
Alexandra van der Staal
When I was a teenager, I started getting these strange nodules on my knuckles – hard knots that would whiten when I made a fist, the skin drawn tight over them. I don’t remember the precise moment I first noticed them. I just remember that at some point, they were there. And they never went away. I was worried about how they looked. About why my hands appeared slightly different from everyone else’s. I was special – though not in the way a teenager wants to be. Sometimes, I tried to control the position of my hands so the knots would be less noticeable, even though they were not particularly obvious. Few people noticed or at least asked about them. But every time they did, something inside me contracted, as if it were my fault that my knuckles were not smooth. They did not hurt. My family grew concerned, and we went to our general practitioner, who tested me for antinuclear antibodies (ANA). They were negative.
At the time, I didn’t understand what that meant, but it was reassuring. Later, as I trained in medicine and clinical immunology, I learned the test’s real ambiguity: how a positive result does not necessarily mean disease, and how a negative one does not rule it out. The immune system is supposed to recognize what is foreign. But in some of us, it becomes a little too curious about what is familiar – biting the hand that feeds it, in a way.
The negative result felt like permission to ignore. So I did. I went on with my life and with my knotty knuckles. They still did not hurt. They varied in size and location, but I was never nodule-free. Every few years, I would bring them up again, usually when my concern flared just enough to outweigh my inertia. By then, I had moved from Bucharest to Vienna and was studying medicine. I saw several general practitioners over the years. None had seen similar nodules. Most suggested the same thing: see a surgeon, “take one out.” I always declined. It felt too invasive – too close to tendons and nerves – for a question no one could name yet. I used their eagerness, and my refusal, as permission to drop the matter.
Years later, I was playing squash at a gentle pace when I felt a sharp pain and heard a snap. I fell to the floor. I touched my foot and could not feel my Achilles tendon – it was gone. Just like that. I went to the hospital. I was already a doctor by then, and I knew exactly what would happen: someone would press on it, find the gap, order an ultrasound, confirm the rupture, schedule surgery. The pathology report described a tendon that was severely degenerated. That word landed with a thud: degenerated, like something old, neglected, quietly failing. I wore a boot for months. The calf shrank. My gait turned cautious. Relearning how to walk is humiliating in a way I didn’t anticipate: counting steps, counting pain, bargaining with stairs.
In the clinic I learned how often uncertainty is judged through performance. Some patients fit every criterion and look almost well. Others hurt in ways that never show up on paper. I am the kind who tries to leave early – half a joke, half a sprint – offering reassurance before anyone asks for it. Uncertainty has its own gravity.
As my working hours grew longer – shifts, late nights, more emotional strain – I started noticing other diffuse symptoms. Some lymph nodes would ache intermittently, just for a few minutes, several times a day, over the course of a week or so. A radiologist friend took a look and reassured me it was nothing serious. I was relieved. I moved on. Then came joint pain in my hands at night. I would wake up almost unable to make a fist. I’d flex them under the blanket like a quiet test, as if compliance could be negotiated. I moved on. Then I coughed up blood – twice, the first time over several days. I knew that in healthy people, this is usually self-limiting and related to an airway infection. My episodes were also self-limiting. But the sight of bright red in the white sink landed differently. I wanted it to be nothing. I also wanted it to be something, because something can be named. I rinsed the sink as if that could undo what I’d seen. It unnerved me in a way the others had not. I decided to investigate.
I had moved to another city in Switzerland, which meant a new general practitioner. He took me seriously. The consultation was brief, but he ordered a full panel. My ANA was now positive. I am training as a clinical immunologist. I have explained ANA results to patients dozens of times – reassuring, contextualizing, reframing uncertainty. And now there it was: my name, my blood, my result. I stared at it longer than was rational. I heard my own reassuring sentences line up automatically – context, prevalence, false positives – as if I could talk myself out of my own body. I refreshed the page once, like that would change the result.
He referred me to a rheumatologist. She asked me everything I ask my patients. I recognized the cadence of her questions – the structure, the sequence, the small pivots meant to catch what might be missed. I answered “no” the way people do when they are trying not to become a story. As if to say: I’m fine. I don’t have any issues. I forgot to mention the ruptured Achilles. But I told her about the nodules, the joint pain, the bleeding, the lymph nodes. Recently, there had been leg cramps at night, bothersome, but not dramatic. Still, I mentioned them.
She drew blood again, this time to repeat the ANA and identify any specific patterns. The results came back: a combination of autoantibodies, including PM/Scl and Mi-2. As a clinical immunologist, I am supposed to understand what that means. I do, but not in a way that helps. The antibodies suggest something in the myositis spectrum, maybe with features of systemic sclerosis or undifferentiated connective tissue disease. Nothing definitive. Nothing actionable. Flagged, but unfiled. Whether this explains some of my symptoms, or all of them, or none at all, remains uncertain. The problem with knowing what to look for is that you stop being able to unsee it.
Having an autoimmune condition is like living with a ghost. You feel it in the house – sometimes you hear the creaks, sometimes it brushes against you playfully. Other times, it rattles the bed, even though it never did that before. And sometimes, it actually bruises you. Some people see its face. Others do not. Some can only sleep with the lights on. It infuriates some. There are horror movies where the tide turns precisely when the hero – stalked by some uncanny creature – has had enough, and anger rises above fear. That is the moment you can fight back.
The week my antibodies came back, I was in clinic and a woman sat across from me with pain that was not reflected in her labs. She had learned the same lesson most of us do, eventually: numbers are persuasive; bodies are suspicious. She spoke as if she were on trial. She downplayed herself in advance, offering the normal results like character witnesses.
I recognized the move. I do it too.
A year ago, I would have chased a label for her the way I chase it for myself – another panel, another marker, another chance to turn discomfort into something named. My cursor hovered over the order set. The old reflex is strangely intimate: if I can measure it, I can hold it; if I can hold it, I won’t have to feel it move.
Instead, I canceled the order. I wrote a watchful plan with a stop-rule: if she worsens or new symptoms appear, we escalate; if they don’t, we hold. I left one box blank on purpose. It felt like malpractice for a second. Then it felt like practice.
My blood tells a story. I still read it – quietly, privately, with the part of me that wants proof. I live with the ghost. I don’t reorganize the house around it.
Alexandra van der Staal is a physician-in-training in Switzerland in internal medicine and clinical immunology, with a PhD in immunology from the Medical University of Vienna. She writes about diagnostic uncertainty, chronic illness and the awkward gap between what medicine can measure and what people live.