A bit of personal news. I'll admit, I've hesitated to write this. This blog typically focuses on science, academia, and professional development—not my health. But, I feel there are important messages here that extend beyond my experience and touch on broader issues of science, healthcare, and human empathy. So while this is a departure from my usual content, I hope you'll find value.
In February, I caught what seemed like a run-of-the-mill non-COVID viral illness. I recovered from the acute infection, but apparently my immune system didn't receive the "stand down" signal. Instead, it's been attacking my own body, resulting in substantial pain that has persisted since.
At first, I dismissed it as excessive muscle soreness from pushing too hard in the gym (not unusual; humble brag). But this wasn't my normal post-workout pain. It never went away. By six weeks in, the situation deteriorated substantially—I couldn't sleep through the night, put on a shirt without wincing, get up from a chair or out of a car without assistance, or manage to get out of bed without an orchestrated sequence of movements and a bunch of pain. My kid mocked my “old man joints.”
The journey to figure out what's happening has been frustrating and remains incomplete. And even my doctors don’t fully understand what's going on. My previous baseline slipped away quickly—I went from deadlifting and squatting reasonable amounts of weight to being unable to perform even a single pushup within a few weeks. Over-the-counter medications were ineffective.
I'm now receiving treatment, but the course of therapy and long-term outcomes are unclear. It’s an odd limbo when you're being treated for something that isn't fully understood—a mix of hope, uncertainty, and the practical reality of managing the day-to-day while waiting to see if the treatments will work.
I'm sharing this experience for a few reasons:
The chronic pain knowledge gap. When people who don't experience chronic pain hear about someone with chronic pain, they genuinely have no concept of what it means. And because of this disconnect, chronic pain is dismissed. I am guilty of this myself. Chronic pain is all-encompassing in a way that's difficult to articulate. It hurts to sit. It hurts to stand. It hurts to lie down. When those three activities cover essentially everything a body can do, you're left with few options for relief.
Chronic pain isn't just physical—it affects your mood, your relationships, your ability to work, and your basic sense of self. We could all benefit from being more compassionate when thinking about these “invisible” disorders and the holistic toll they take on people's lives.
The viral immunity black box. My immediate response as I started to piece things together was to go to the literature. My conclusion: There is so much we still don't understand about how viruses interact with human health and physiology. My personal records (more below on this) strongly point to a viral trigger. But fundamental questions remain: Why did this virus trigger this response? What virus was it? What's the mechanism by which it's affecting my body, and how common are these kinds of post-viral immune dysregulations?
Long COVID is now infamous. Millions worldwide have experienced persistent symptoms after a COVID infection, ranging from fatigue and brain fog to cardiovascular issues and chronic pain. My situation is a microcosm of what we're seeing at a population level—viruses are thought of as temporary ailments, but can have long-term effects. Whether it's long COVID, chronic fatigue syndrome following EBV, or my own post-viral condition, the reality is that our understanding of how viruses can rewire our immune systems remains frustratingly incomplete.
As such, this experience has reduced my tolerance for anti-science positions to absolute zero (not that they were much above zero). When I hear people dismissing the importance of vaccine research, defunding virus research, or spreading misinformation about public health measures, I now have a visceral reaction. And yes, I'll likely be masking more frequently in the future. The cost-benefit calculation looks different now.
The value of contemporaneous health records. I’m a bit of a data nerd. I've kept meticulous personal health records for years—essentially a lab notebooks full of data about my body. Near-daily entries note what hurts and when, workout details, heart rate data, blood pressure readings, weight, body measurements, and any other metrics I can easily track at home without specialized equipment.
These detailed records proved invaluable in connecting the viral infection to the onset of symptoms, establishing timelines, and identifying patterns that might otherwise have been missed. Without this data, diagnosing the underlying cause would have been nearly impossible. I admit, it’s a bit compulsive. But it makes spotting the deviations from baseline much easier.
The medical system paradox. The medical system is simultaneously miraculous and broken. The diagnostic capabilities, treatments, and expertise available are truly remarkable. Yet, navigating online portals, scheduling appointments, dealing with insurance requirements, managing copays, and meeting complex referral prerequisites for tests can feel like a part-time job in itself.
I'm fortunate to have an excellent care team and support at home, but I genuinely cannot fathom how elderly patients or those with cognitive impairments manage to navigate this system. The barriers to getting necessary care are substantial, even for someone with resources, education, and privilege.
I don't have tidy conclusions or a happy ending (yet!). I'm still in the middle of this journey, still figuring out what works and what doesn't, still trying to rebuild strength by doing what I can to find a new normal.
What I do know is that this experience has changed how I view health, pain, medical research, and our complex relationship with viruses. And there’s a humility that comes with having your immune system decide, for reasons unknown, to turn against your own tissues.
It's a reminder that for all our scientific advances, there are areas of human biology that we're only beginning to understand. And it's a call for more empathy toward those whose bodies are fighting battles we can't see.
take care