I was eighteen, about a year into my chronic pain, and was displaying all the classic markers for a stroke. I underwent an initial MRI and was told by my doctor that I had a possible brain lesion. My terrified parents rushed me to the hospital preparing for the fact I would need brain surgery. After arriving, the ER doctor concurred and agreed more in depth tests were necessary. Those tests would need to be completed as an inpatient, so I was admitted and placed in the stroke ward for further observation. The nurse on the floor witnessed my droopy face, my slurred speech and was waiting for the order of further testing. But then the hospitalist came into my room for the first time and after all that had happened, took one look at me, asked my age, and decided it couldn’t possibly be stroke despite the numerous symptoms I was still displaying in front of his very eyes. He refused to order the specific testing the ER doctor had indicated were warranted, saying he wouldn’t “waste hospital resources on such a complicated case.” After speaking to a patient advocate and my father putting hellfire pressure on the man, he broke and let me get more imaging tests. A couple hours later he came into my room looked me right in the eye and said, “I cannot help you. I will give you pain medication for twenty-four hours and that will be the extent of your care. Whatever you have is above my pay grade. If you have a broken leg, I’m your guy, but I cannot help you.” In that moment I felt more despair than I had ever felt before. I was above his pay grade? He is not even going to try? I couldn’t understand the words coming out of his mouth. After a year of shuffling from doctor to doctor to doctor I had landed here and he wasn’t even going to try to help me. I began to cry. I felt in that moment the weight of his words. I could not be helped. I was going to be stuck like this forever.
And can you guess what this doctor did next? He had the audacity to say, “Well you’re clearly mentally unstable. That’s the problem.” I felt as though he had punched me in the chest. This man didn’t believe my pain was real. He thought I was clinically insane and manifesting physical pain for attention. He genuinely believed I crafted this lie in order to be able to skip school.
But to that, I say fuck you sir. I was a straight A student, an elite athlete, and because of the pain I lost both of those things. I lost my whole life. I wanted nothing more than to be able to go to school, to pitch one more game, but I couldn’t. And he, after one look, had decided I just wanted to ditch school. Now that’s what I call lazy.
Unfortunately he isn’t alone. Many doctors view chronic pain as a mental illness, a cry for attention, or a complete lie. They don’t even listen to you. They shove a square peg in a round hole and then give up, just like that man, and punt to someone else. But it doesn’t have to be that way. It’s your care and you get a say.
Here are my tips on getting through the nightmare of a horrible doctor:
- Believe in yourself
You know you are in pain. You know it is real. Don’t let them wear you down and feed you the lie that you’re making this up. Stick to your guns and be your own advocate.
- Don’t underestimate the importance of a good pain management doctor.
Find one that listens to you: a doctor that believes in you and is committed to helping you in this journey. Have them write a note validating your symptoms with their contact information that you can take with you to appointments and to those late night emergency room visits when your pain is out of control.
- Have some support
You don’t have to go it alone. For me, my closest support is my parents. They come to appointments to support me, add validation to my story, and help me to feel confident in asking for what I need.
Good luck out there!