Why Chronically Ill People Don’t Always Recognize a Medical Crisis
When the pain first started, I thought, “It’s probably just another flare.”
I waited. I always wait. By the time I realized something was really wrong, I was already doubled over in pain, vomiting bile, and unable to stand upright.
That wasn’t self-neglect. It was conditioning; years of being told it can’t possibly hurt that much or comments that questioned if I might be exaggerating my symptoms. Chronic illness and the response we typically get from many medical providers teach us to second-guess our own pain.
The Pain Scale Paradox
Even the standard 1–10 pain scale trains us to minimize what we feel. With chronic illness, I’m never really below a five. But if I tell a nurse my pain is a ten, I’m often reminded that “ten is the worst pain imaginable” or “the worst pain you’ve ever felt.”
Well, I’ve had pain that would knock an elephant off its feet or make a quarterback sob in agony, but is this the worst pain I’ve ever felt? Not half! That’s the trap: when your baseline is already high, the scale stops meaning anything. What’s “severe” for most people has become our everyday normal. For many with chronic illnesses in a medical crisis, on a scale of 1 to 10, we are a 47!
When ‘Wait and See’ Becomes Dangerous
Over time, we start doing to ourselves what others have done to us: minimizing, rationalizing, waiting. With complex medical conditions, where multiple systems overlap or contradict each other, doctors often can’t pinpoint a single cause. The “wait and see” approach becomes the default. “Let’s try one thing and see how you react,” followed by another and another, until months, or even years, pass.
But chronic illness doesn’t work that way. Symptoms may be managed, but they rarely disappear. Some treatments help; others backfire. A few work for a while, then stop. Sometimes, treating one problem triggers another.
When that cycle repeats, both patient and doctor start doubting what they see. Physicians get frustrated with what they can’t fix and patients learn to keep quiet about what still hurts.
How the System Teaches Us to Doubt Ourselves
Many doctors, especially those unfamiliar with chronic pain conditions, grow impatient when the expected “miraculous recovery” doesn’t happen. Some take that frustration out on patients: labeling them “difficult,” limiting care, or implying they’re exaggerating.
We internalize that judgment. We stop calling, stop asking, stop trusting ourselves. We tell ourselves what we’ve heard and experienced so many times, “Maybe it’s not that bad.” We delay going in until it’s an emergency, or until someone else steps in and demands we seek help. Why do we wait? Because if we went to the hospital every time we were in extreme pain, we’d risk being seen as attention-seeking, or worse yet, as “drug-seeking.” Neither is true, but the fear of being dismissed keeps us silent.
Enduring Isn’t the Same as Being Numb
People with chronic illness are not desensitized to pain. We are simply practiced at functioning through it. It’s a survival mechanism, not a lack of sensation.
If an able-bodied person felt what we feel on an average day, they’d call an ambulance. We just keep going because we can’t spend our entire life rolling around on the floor, screaming and crying! Our mantra often becomes “what cannot be cured must be endured.” That endurance, though, blurs the line between “normal” and “crisis,” sometimes to the point that things become life-threatening or life-limiting before we realize what has happened.
The Aftermath of Self-Doubt
When things finally spiral, we look back in disbelief:“Why didn’t I call an ambulance? Why didn’t I go in sooner?” “Why didn’t I just that the hard stance and advocate for myself?”
But the real issue isn’t personal failure; it’s a healthcare culture that invalidates suffering until it’s life-threatening. That delay can mean intensive interventions, emergency surgeries, or critical care stays that could have been prevented.
A Call for Empathy and Change
If medical providers and indeed, our own friends and family, instead of labeling us complainers, oversensitive, or fixated, simply reassured us that we were right to seek help, it could change everything. Empathy is so powerful!
Encourage us to believe ourselves. Remind us that knowing our bodies is a strength, not an obstacle.
Unfortunately, our system rewards speed and limits access to medical providers and treatments. Many specialists can only see patients every six to eight weeks, even during severe flares. That “wait and see” approach leaves people suffering for months, sometimes years, before real help arrives. No one should have to live that long in pain.
Learning to Trust Ourselves Again
We’ve spent years downplaying our pain to make others comfortable. We’ve spent years being passed from one specialist to another, without resolution or even basic follow-up.
It’s easy enough to say, “You have to be your own advocate and demand help!” but it is harder to do when the system is stacked against you, and you risk having your medical care limited or even denied if you are seen as being too hyper-focused on your own illness or falsely accused of exaggerating your symptoms. But despite all of that, it’s time we learn to trust our bodies again, before they have to scream to be heard.
We don’t doubt ourselves, at least that’s how I feel, I choose not to call my doctor because of I Have No Faith In Doctors Anymore, Nor Our Healthcare System
I’m glad you don’t doubt yourself. I sometimes do. I am very fortunate, I qualified for a CCM (Critical Care Manager), which is for those with very complex medical conditions. My PCP only works with medical complex patients and older patients in Assisted Living, and she is available to me by phone, text, or email, basically 24/7. I can pick up my phone and just text her. It has saved my life more than once. Before, I’d sometimes have to wait up to 8 weeks to get an appointment with my PCP, and by then, I would have already been hospitalized. Now, if I need meds, I get a prescription right way. If I need labs, they come to my house the next morning to do them. If I need an x-ray, they send the mobile x-ray unit to my home. I still have to go for imaging because obviously there isn’t a portable MRI or PET scan or such, but it still helps so much! Before I got a CCM, I can’t tell you how many times I’d end up, not just at the ER, but admitted to the hospital for days or weeks! It has only happened once since then, and that was because I had septocemia (which has to be treated for weeks in the hospital.)