I’m in pain today, so please forgive the profanity. Pain has become a constant companion for me for several years now, though some days are worse than others.

I am also a pediatrician, which means I am one of the “nice doctors” who does not curse. I have never been particularly good at following that expectation outside of the exam room.

As I lay in a hospital in the summer of 2023, just days before I was supposed to move my daughter into her freshman college dorm, I was scared. I had just learned that my descending aorta was only 4 mm wide and that I had Takayasu’s arteritis (TAK), a disease I somewhat remembered from medical school as occurring primarily in young Asian women, and I was neither. I had previously been diagnosed with ankylosing spondylitis (AS), another disease I vaguely remembered from medical school as primarily affecting young men (I just knew to choose “bamboo spine” if it came up in a board question). Again, I was neither.

I was diagnosed after a trip to the ER for abdominal pain, when an attentive and excellent emergency physician I knew heard a bruit in my abdomen. I was sent by ambulance for lots and lots of imaging and so much blood work. Reading PubMed and UpToDate as I lay in my hospital bed only made me more frightened, so I stopped reading and placed my trust in the excellent physicians caring for me.

I was hospitalized for five days, anxious not only about my health but also about whether I would be discharged in time to take my daughter to college (I was!). I turned to social media support groups for TAK and AS, reading about other patients’ experiences and searching for reassurance. There, I noticed a pattern. Many patients had previously been diagnosed with fibromyalgia before later discovering they had TAK, AS, or another autoimmune disease.

Every time I read those posts, I thought the same thing: They did not “develop” TAK or AS after fibromyalgia. They had undiagnosed autoimmune disease all along.

Their stories were familiar because, early in my own illness, I too had been diagnosed with fibromyalgia and depression before ultimately landing in the ER. I remember one physician suggesting an antidepressant despite elevated inflammatory markers, anemia, weight loss, and cervical spine bone marrow edema. I am thankful I didn’t have a visible thought bubble above my head with all of the profanity that came to mind. I declined the prescription for an SSRI and went searching for another doctor.

I was angry, but I also understood where that thinking came from. I remember exactly how fibromyalgia was discussed during my medical training.

During my third-year internal medicine rotation, I was taught, implicitly and explicitly, that fibromyalgia was often a diagnosis given to depressed middle-aged women with vague pain complaints. The message, whether intended or not, was that these were difficult patients who could not be helped medically. Give the symptoms a name, and the encounter could end with a recommendation for a therapist.

As a young medical student, I absorbed that narrative without questioning it. Years later, both as a practicing pediatrician and eventually as a patient myself, I came to understand how deeply damaging that mindset can be.

To be clear, fibromyalgia is a real condition. Patients living with it deserve thoughtful, compassionate care. My concern is not with the legitimacy of fibromyalgia itself, but with the way the diagnosis can sometimes prematurely halt further investigation. Fibromyalgia can become the Clydesdale horse trampling every zebra in its path.

Once patients are labeled, new symptoms are often filtered through that diagnosis rather than reconsidered with fresh eyes. Fatigue, pain, weight loss, fevers, neurologic complaints, vascular symptoms, everything becomes “the fibro.” My Facebook support group friends accepted this was just the way their life was until their kidneys failed, an aneurysm ruptured, or they had a myocardial infarction.

I often think about how differently my story could have ended had someone not listened carefully enough or examined closely enough to question the original assumption. The ER physician who heard the bruit knew me. We had spoken many times before about pediatric patients in the emergency department who needed follow-up with me. I still wonder whether I benefited from a different kind of bias that day, the bias of being known.

Women are disproportionately affected by these diagnostic biases, though men experience them as well. Medicine teaches us, appropriately, to look for common diagnoses before rare ones. Most physicians may never encounter a case of Takayasu’s arteritis in their careers, and few will see ankylosing spondylitis often. But there is an important distinction between considering a rare disease unlikely and dismissing the patient in front of you.

The danger is not simply missing a zebra. The danger is deciding too early that the patient herself is the problem.

Living with two rare autoimmune diseases has changed the way I think about medicine, the way I understand patients, and ultimately the stories I feel compelled to tell. I once understood diagnostic bias as an abstract concept taught in medical school. Now I understand it as something lived and something that can determine whether a patient is investigated further or prematurely labeled. In periods of significant pain, when I could do little more than rest, I wrote. My debut fiction novel, Ava, written under the pseudonym Victoria Dillon, was born partly from that transformation, from living inside a body and a medical system that at times felt unheard.

F*ck fibromyalgia was never really the point. F*ck diagnostic bias was.

Victoria Rundus is a board-certified pediatrician practicing at Vanderbilt Children’s Hospital and a former research scientist. She is affiliated with VIP MidSouth, LLC.

Her debut novel, Ava, was published under the pseudonym Victoria Dillon and is featured on her author website.

In 2023, Rundus was diagnosed with Takayasu’s arteritis and ankylosing spondylitis. The two autoimmune illnesses have affected her ability to practice medicine but have given her the opportunity to write. She shares updates on Instagram and Bluesky.