An open letter to the first doctor who invalidated my pain

I met you when I was 20 years old. Scared, worried, and in the worst pain I had ever experienced, I held the tiny seed of hope that doctors would be able to help my pain become past tense. You were just a first year resident on your rheumatology rotation at the University of Michigan hospital, responsible for doing my initial examination before the real rheumatologist came in. I don't know anything about your life, your own experiences with physical pain, or the training you received before you treated me. All I have to judge you by is that visit and how you treated me. 

When you came into the exam room you quickly told me that all of my bloodwork had come back normal with no signs of inflammation. My experience since meeting you has taught me that when medical tests do not readily reveal the source of pain, doctors can be apt to judge one's pain as psychosomatic. But I didn't know that then. I just thought doctors were supposed to help.

You didn't listen when I shared how much pain I was in and what exactly hurt. You just pressed on various points on my body asking if they were tender and shared that you felt I probably had Fibromyalgia. You didn't hear that I was not in muscle pain and that none of the "tender points" felt tender. I can't say what you saw when you looked at me, but it certainly felt like you didn't see me. I don't think you saw the otherwise extremely healthy 20 year old college junior who up until a few weeks beforehand had spent most of her free time rock climbing, running, and playing soccer. I can't say I know what you were thinking about me, but your curtness made me feel like nothing more than an inconvenience. 

But I'm a fighter with a researcher's heart and mind. I had already read countless articles in the weeks I had been sick, searching for answers to my joint pain. I knew Fibromyalgia wasn't it. And I knew you weren't really listening to me. 

But now, 7 years later I want to thank you. Yes, thank you. Your invalidation of my pain helped me begin validating myself. To get help I had to trust my intuition. I had to trust my inner knowledge that something was profoundly wrong in my body, even when you didn't fully believe me. Your trivialization of my pain set me on a trajectory of learning how to honor my body and all of the emotions that surround being sick. Your invalidation taught me that minimizing my pain is not ok. And for that, I am forever grateful. 

Sincerely,

Katie Jo Ramsey

P.S. You were wrong. I have Ankylosing Spondylitis, a disease which often shows up as normal on blood tests. Arthritis Research UK estimates that only 30–40% of people with ankylosing spondylitis have inflammation that can be picked up in a blood test, making it all the more important for patients like me to trust their symptoms and fight to be heard.

 Getting my Remicade infusion last year (Due for another tomorrow, thank God! Flaring while I wait for it...)

Getting my Remicade infusion last year (Due for another tomorrow, thank God! Flaring while I wait for it...)

This blog was also published at The Mighty, a community of storytellers facing disease, disability, and mental illness together. See it here!