I recently switched to a new thyroid medication that made my body and mind feel like they were being pressed through the holes in a metal cheese grater. That was the closest I came to describing this odd sensation. I had no burning, sharp pain, or ache. I could not point to a specific part of my body that hurt, nor could I parse out my body from my mind. When someone runs fingernails down a chalkboard, what is it that actually hurts? Your ears, your spine, your mind? This was the same kind of thing.
I have become familiar with the crazy making experience of feeling symptoms for which there are no accurate or typical descriptions. In the year leading up to my young adult cancer diagnosis I had many such symptoms. My doctors still have no idea what they were and don’t believe they were related to the 19 malignant thyroid tumors sprinkled throughout my neck.
I used to resent the medical world for only believing symptoms that have been documented and observed in large numbers of patients. Over time I have shed my resentment; science aids my body, and most doctors are my allies. Study and discovery based on empirical evidence is their game, from which I benefit daily. Still, it is scary wall to hit where doctors are stumped by symptoms. Many docs could do a better job of communicating to patients about these dead ends. But anger about being an outlier and animosity towards doctors do not help the situation.
Instead, I’ve developed tricks to cope with random, unnamed symptoms. They don’t always work, but they allow me to be proactive, which can also help me feel better.
1. I make sure I have a good doctor who is on top of new information about my disease. (My thyroid cancer doctor is fantastic. I saw at least six other doctors before I found him. He is not God. He cannot understand or change all of my symptoms, but his smarts and forward thinking approach to my disease put my mind at ease.)
2. Making up a name for the symptom helps me differentiate it from other sensations I’m experiencing, and allows me to track changes. Even if my doctor is stymied and not documenting these symptoms, I continue to do so.
3. I talk about my health with someone who believes what I am experiencing and wants to know how I am doing. It helps to have a friend say, “So how’s the blood-boiling-sticky-taffy-feeling in your upper arms these days?”
4. I tap into my well of self-confidence and remind myself that what I am feeling is real, valid, and deserves attention even if it has no name.
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
