When the Test Results Don’t Explain How You Feel

You went to the appointment, answered the questions, had the exam, maybe waited a few weeks and then got an X-ray, MRI, blood work, or another test, and waited even longer for someone to tell you what those results were. Then the results come back and you hear some version of, “Everything looks fine.”

There can be a lot of relief in hearing that. Maybe something serious has been ruled out, or the test didn’t show the injury or condition you were worried about. That’s good news! But if you’re still experiencing pain or something still doesn’t feel right, it’s also reasonable to walk away thinking, so why do I still feel this way and what do I do now?

This can be one of the more frustrating places to find yourself in healthcare. You went looking for an explanation, and while the information you received may be reassuring, it doesn’t necessarily explain what you’ve been experiencing. Before we start looking for another test or trying to explain away what someone is feeling, sometimes the first response needs to be much more human: I’m sorry you’re experiencing this. I can tell something is going on.

Test results are only one piece of the picture.

The amount of information we can gather about the human body is pretty incredible. X-rays, MRIs, CT scans, ultrasounds, blood work, physical examinations, and other tests help us rule out certain conditions and make informed decisions about what should happen next. But no single test gives us 100% of the picture. Different tests are designed to tell us different things, and each can be incredibly useful without explaining everything a person is experiencing.

An image can’t show us how your symptoms change from the time you wake up until you go to bed. It doesn’t capture that you’ve slowly stopped taking your usual walk because you’re not sure whether it’s helping or making things worse. Those details may not appear on a scan, but they’re useful information.

What we see on a test and what someone experiences also don’t always line up perfectly. Sometimes imaging identifies changes in people who aren’t experiencing any symptoms at all. Other times, someone can experience very real pain without a test providing one obvious structural explanation for how they feel. That doesn’t mean the test was wrong, something was missed, or the pain isn’t real. It means there may be more of the picture to consider.

Listening is part of gathering information.

One of the greatest gifts we can give each other, especially as healthcare professionals, is to listen to what someone is actually experiencing.

As an occupational therapist, I want to know what the medical evaluation has shown and where something hurts, but I’m also interested in what has happened in all components of life around it. When did you first notice it? What makes it better or worse? Does it change throughout the day? Have you stopped doing something you enjoy? Are there movements you’ve started avoiding? Has it changed how you work, exercise, sleep, take care of your home, or get through your normal routine? It’s also important for me to understand how much mental space what you are experiencing is taking up.

You can still be going to work, making dinner, exercising, running errands, and doing everything you’re “supposed” to be doing while constantly wondering whether you should lift something, wonder if you will hurt tomorrow, or try to figure out why something felt fine yesterday but doesn’t today. When you don’t have a clear explanation for what you’re experiencing, that constant calculation can become exhausting and really affect your mental health.

These aren’t just questions we ask because the medical tests didn’t give us an answer. They’re another source of information about what someone is experiencing and how it’s impacting their life.

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​Our bodies affect our lives in quiet ways.

We’re pretty good at adapting without realizing we’re doing it. If bending over bothers you, you find another way to pick something up. If walking for a long time has become uncomfortable, you might automatically choose a closer parking spot. Maybe you still exercise regularly but realize there are a few movements you quietly stopped going months ago.

None of those things is automatically a problem. Sometimes changing how we do something makes perfect sense. But those little adaptations can tell us something about how our bodies are affecting everyday life.

This is one of the reasons occupational therapy has always made so much sense to me. Health doesn’t stop when someone leaves an appointment. Whatever is happening in your body comes home with you. It goes to work with you, gets in the car with you, shows up when you’re trying to exercise, and occasionally makes something as boring as unloading the dishwasher much more complicated than it needs to be.

A test result can give us valuable information, but it can’t tell us that whole story. We have to ask.

When there isn’t one clear answer, ask different questions.

When something hurts, What’s wrong? is a pretty natural question. Sometimes there is a clear answer, and finding it matters. But when you’ve had an appropriate medical evaluation and there isn’t one explanation that accounts for everything you’re experiencing, there may be other useful questions to ask alongside it.

When do I notice this most? What seems to make it better or worse? Has anything changed about the way I move through my day? What am I avoiding because I’m worried it will hurt? What have I stopped doing that I’d like to get back to?

You don’t need to document every weird thing your body does (we’d all need a much bigger notebook). The goal isn’t to become more preoccupied with your symptoms. It’s to notice whether there are patterns that can provide useful information alongside your medical history, examination, and test results.

Instead of only asking what’s damaged, we can start paying attention to what affects our symptoms, how they change, and what they may be changing about the way we live.

You are part of the picture too.

Good healthcare should have room for what the tests tell us and what you report about how you feel.

Hopefully, a test gives us a clear answer. Sometimes it gives us one helpful piece of information, and sometimes it rules out something important but doesn’t fully explain why you still don’t feel like yourself.

If you’ve ever been told that everything looks fine while sitting there thinking, But I still don’t feel fine, I hope the conversation doesn’t end there. A reassuring test result doesn’t make your symptoms, questions, or the changes you’ve noticed in your everyday life any less important.

We have incredible tools for seeing, testing, and measuring the human body, but none of them can tell us exactly what it feels like to live in yours. That’s why listening matters. What you notice about your body, what has changed in your everyday life, and what you’re still trying to make sense of are all part of the information we need to work with.

Not having a clear answer can be frustrating, especially when you’ve already spent time and most likely money in hoping the next appointment will finally explain what you’re experiencing. But not having one simple explanation doesn’t mean there’s nothing left to learn about what you’re experiencing. Sometimes the next step is to look at the bigger picture, pay attention to the patterns, and keep asking questions that help you better understand what your body is telling you.

And hopefully, somewhere along the way, you have healthcare professionals who are willing to listen.
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