Improving communication with doctors means trusting ourselves as patients
It's important to speak up when test results are normal but something feels off
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Has the following scenario ever happened to you? Test results come back normal, but you know something’s off. Personally, I’ve learned how to feel the inflammation and disease in my body. I know when it is active, even if lab results don’t tell that story.
Most people would consider normal test results as welcome news. For those of us with ANCA vasculitis, a disease that’s hard to pinpoint, they can be maddening. Our bodies might be telling one story, while the numbers on a screen tell another. We can look completely fine, and our labs can come back clean, yet we’re still seriously unwell. That space between how we appear on paper and how we actually feel in our bodies is one of the loneliest gaps we must live with.
In those moments, I must help my doctor understand what I’m experiencing. Speaking up isn’t optional for me. By doing so, I’ve found the greatest healing. When I share the details of what I’m experiencing so that my doctor can understand, we both benefit. I feel heard, and she learns a little more about what it’s like to live with this disease inside our bodies.
It’s not always easy to speak up, because we don’t want to be seen as a complaining patient. But telling doctors when we are unwell is important. Addressing a small flare can help reduce the likelihood of it becoming more serious. It matters, and we matter.
When you live with a rare disease, your relationship with your doctor becomes vital. You need them to listen and trust you, even when your labs are arguing the opposite. What we leave unsaid can matter enormously.
The Eosinophilic & Rare Disease Cooperative, which I co-founded, is currently conducting a survey about the things we patients don’t tell our doctors. I suspect that we all have things we don’t share with them, either intentionally or not. The results will eventually be shared with physicians to help them better understand their patients and eliminate gaps in communication.
If you have five minutes, please consider filling out our survey and join us in discovering why our physicians may not be getting the whole story. By better communicating with our doctors, our relationships with them can become stronger over time, and that is a worthwhile endeavor.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
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