Big Picture Time: Redefining What It Means to Be a Patient (In my case with Chronic Pain)

Introduction: A Heart Test and Black Rock Coffee To break up the usual medical monotony of living with rheumatoid arthritis and chronic pain, I recently had a cardiac stress test. There were two reasons for it. First, I’ve had random, short-lived chest pains for years. They’re not severe, but my doctor wanted to rule out any hidden cardiac issues. Second, my latest EKG showed that my heart has finally healed enough from my 2017 atrial fibrillation episode (which took four heart procedures in 90 days to resolve) that I might be able to reduce the number of meds I take to prevent future episodes.

The worst part of the stress test? I had to come off caffeine for a couple of days. I’m currently at Black Rock making up for lost time.

The Trap of “Yes or No” Medicine If you’ve never had the pleasure of partaking in a cardiac stress test, it’s a lot of hurry up and wait. At one point, they injected me with radioactive material, then made me sit around for an hour before taking the first round of images. Naturally, I passed the time listening to medical podcasts. One in particular got me thinking about the chronic illness community.

In autoimmune arthritis and chronic pain circles, we often measure the patient experience—and treatment success—in binary terms: yes or no, success or failure. But these diseases are too complex for black-and-white thinking. When we apply this overly simplistic lens, we end up discounting people whose experience doesn’t fit into neat categories.

Take opioid use, for example. The current default in medicine is to refuse to prescribe them or taper patients off—not based on the individual need or medical necessity, but because of the broader crisis. Yes, one overdose death is one too many. But that shouldn't overshadow the fact that countless patients have had their quality of life improved by responsible opioid use. If one death is too many, then one success story should also be enough to justify continuing to offer that treatment option to the patients who need it.

What Does It Mean to Be a Patient? One of the most bizarre aspects of living with a disease like RA or lupus is that you can be both healthy and sick at the same time. It sounds contradictory, I know. But it’s possible to be a healthy sick person.

Ask Dr. Google for a definition of "patient," and you’ll get something like: "a person receiving medical care, usually from a doctor or hospital." Images return the classic scene—someone in a hospital bed, hooked up to machines, a smiling doctor at their side. Despite all the changes in medicine in recent years, that definition still dominates how we think about patients.

But for chronic patients, that image doesn’t reflect our reality. Even if I see a doctor monthly, most of my care happens outside of medical offices. I spend more time in the gym, or hiking, than I do in exam rooms. And yet, some patient advocates still argue we should try to look more like that traditional image—that the more we present ourselves as suffering, the easier it is to justify treatment like opioid use.

I get the logic, but I respectfully disagree. We shouldn’t live our lives to fit someone else’s outdated definition. We should be living lives full of curiosity, purpose, and movement. I don’t have to define what a patient is. I am a patient.

What Is a Healthy Sick Patient? In a word: stable. Stability doesn’t mean we’re pain-free. It means our symptoms are managed. We’re still living with swollen joints and chronic fatigue, but they’re at our baseline.

My personal baseline is about a 5 or 6 out of 10 on the pain scale. For reference, a 10 out of 10 was the night I fell off a cliff while rock climbing. That night was both physically and mentally shattering. I cycled through every emotional response trying to find one I could cling to for stability. That was a very bad day.

Now, thanks to my combination of arthritis, prior injuries, and ongoing disease activity, my "normal" is a pain level that most healthy people would find debilitating or at the very least, send them to the emergency room. But I’ve adapted. With support—including daily use of opioids to keep things from climbing to a 7 or 8—I’ve achieved stability. This stability lets me work full-time, hike, work out, travel, and write blog posts. I am a healthy sick patient.

Stability Still Includes Bad Days Let’s be clear: stability doesn’t mean the absence of flare-ups or disease activity. I still have days (or weeks) where pain spikes to 8 or 9. A physical therapist once told me, “You’re lots of hurt, so you’ve earned the right to bad days.” That always stuck with me. Sometimes we mistake increased pain as a sign that meds are failing, when it might just be a reminder of the damage already done. This distinction is often when of the first things we must learn as a healthy sick person.

Doctors are trained to help us spot when our stable becomes unstable. In my case, instability might look like higher blood pressure, insomnia, diet issues, or emotional fatigue. And yes, sometimes patients like me push for stronger meds not because they’re medically necessary but because they validate our experience. Validation is powerful.

Why Treatment Must Be Part of the Definition There is no perfect test or number to define stability or success. But if we keep clinging to outdated ideas of what a patient looks like, we risk excluding people who don’t fit the mold—and losing access to treatments that work.

When treatment is ignored in our definition of what it means to be a patient, it becomes easier to justify cutting off therapies that help the "minority" who need them most. That’s why success stories matter. We can’t let the medical narrative be shaped solely by extremes or headlines. Our successes, however big or small, are just as important to the medical narrative as our symptoms or bad days.

As I said earlier: if one death is too many, then one life improved should be enough.

Final Thoughts: Patients Are More Than Suffering Everyone has some idea of what it means to be a patient. Most assume it means someone is suffering. But I believe the definition should include the process of treatment, not just the condition.

We’re a society obsessed with measurement. Sometimes that’s helpful (step counters). Sometimes it’s absurd (hot dog eating contests). But when we rank treatments by impersonal success rates, we risk ignoring the lived realities of people like me. I’m a high-functioning chronic pain patient, thanks in part to opioids. Ignoring my story because it doesn’t align with a moral or current political stance on medication is not just shortsighted—it’s dangerous.

So, here’s the big picture: treatment is part of the definition of being a patient. It matters. And telling our full stories—the good, the bad, the gnarly—is how we make medicine more human. And in a world where impersonal artificial intelligence is rapidly becoming as common as a band aid, we need to continue to do all we can to keep the humanity in medicine.

Let’s never forget, good science doesn’t thrive on likes and shares. It thrives on truth.