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I Know More Than You Do - Chronically Whole

I Know More Than You Do

March 7, 2016 | Posted in: Chronic Illness and Diagnosis, chronic illness; support, Physicians

I really appreciate doctors. They are active scientists, trying to discern what is really going on in the complexity of the human body. They spent many years getting educated in this area and genuinely want to help and solve problems. They also (the best ones) have learned how to be comforters and supporters. One of my best friends is a doctor. My parents are nurses. I have mad respect for the medical community in general.

And yet, many doctors are unable to say three simple words: “I don’t know.” Click To Tweet Somewhere along the way, they become convinced they must have all the answers (which, true scientists never do). This leads to an inability to admit you might have something to teach them. The worst of this group, are simply too prideful to admit they don’t know or might be wrong about something.

I did not go to medical school. I don’t know many things related to medicine. I still get frustrated when my parents spout scientific terms for the common cold (just speak in English please!). However, I am an expert in all things related to my disorder. I’ve been dealing with it for my entire life. I self-infuse my medicine at home…I know what it feels like when the needle is in the vein or not. I’ve had more internal bleeds than I can count. I know the pressure and pain that comes when there is blood where there shouldn’t be. I understand intrinsically why my blood doesn’t clot properly (even if I can’t use the scientific terms to explain it). I can teach you something you probably don’t know about this often misunderstood disorder.


I am sure there are things I can learn from you too. I am always cataloguing, collecting new research, information and explanations related to my condition. I am eager to hear new treatments, conclusions, and suggestions you might have.

Please be willing to listen to me as well. I am well versed in my health. I’ve been to the school of experience over and over and over again. When I insist I need a certain treatment, don’t pontificate to me about all the reasons why that can’t be it. I know what works and what my body needs. When I explain the cause of another bleed, don’t turn me into your science experiment and run unnecessary tests to explain what I am already telling you. I am literally the best person in this moment to educate you on what is wrong with my body and how to help. So simply do that: help. Provide some comfort and support, be willing to learn something knew. Be eager to say, “I don’t know. Please tell me more.”

I promise we will both learn and grow in exchange.  Those of us with a chronic illness desperately need you to be willing to admit to not knowing. In fact, we may trust you even more for it.

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