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 my blood work 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, some 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 said 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, seven 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 the emotions that surround being sick. Your invalidation taught me that minimizing my pain is not OK. And for that, I am forever grateful.
Katie Jo Ramsey
P.S. I have ankylosing spondylitis, a disease which often shows up as normal on blood tests. Arthritis Research UK estimates that only 30 to 40 percent 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.
Follow this journey on Anchor for the Soul.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.