Maybe the title of this post is unfair and an overstatement. However, it describes exactly how I felt after an office visit with a neurologist where I described neurological and physical ailments and he prescribed cognitive behavioral therapy*. My over-arching impression was, “My doctor does not see me as a reliable witness regarding my own health. He does not think it is true when I say I am feeling imbalanced or achy or swollen in my neck.”
Wow. This realization rocked my world. It also made me think that my entire primary care team may feel the very same about me. I can’t help but wonder if denigrating comments about me have been passed along my care team members via electronic medical records (“My Chart” or the like). Have I been labeled as a “difficult patient”? Would any doctor in this medical institution have the chance to evaluate me without the propagated bias of “she’s crazy”? I don’t know. I definitely feel paranoid about this possibility.
I am angry and sad at how difficult it is for any person with a mental illness to receive unbiased medical care. Long before I had this appointment with Dr. Rookie, I have often felt shame and embarrassment as doctors read and reviewed my current mediation list during the onset of an appointment. Why? Because every time after I proceed to discuss my chief complaint (sinus infection, enlarged thyroid, numbness in my leg), it seems like the doctor immediately asks, “Are you doing through a difficult, stressful time in life?”
My story is not alone. I have two acquaintances, with histories of OCD, who were eventually diagnosed with stage 4 cancer. One of them received a diagnosis of hypochondria before the diagnosis of a brain tumor. I suspect that a #MeToo- like movement will come to life from mentally ill patients who faced misdiagnosis because of deeply held (and probably hidden) biases by their medical professionals who wrongly categorized them as unreliable witnesses regarding their own health.
I want to be very clear on two points: First, I think cognitive behavioral therapy is a valuable tool. I do need it. But I think it will be a part of my recovery after my infections, inflammation and compromised immune system have been treated. Second, I do not view having a mental illness caused by an autoimmune illness as a “better” outcome for me. I simply want proper treatment. If, for some reason, it revealed that I do NOT have PANDAS or any underlying infections and that I am simply OCD about being sick, then so be it. I want to know the truth. I want to get better. I want the proper treatments.
Categories: The story continues