For some time I’ve been having a recurring dream – actually, it’s now a live waking vision – that I make an appointment to see the doctor who started me on my journey into chronic pain. She no longer works at the hospital where I was first treated for, and ignored when I described, my severe pelvic pain so I would need to do some detective work to track her down. Why would I want to exert any effort to see her you might be wondering? Well, when someone irreversibly changes your life for the worst you get an overwhelming desire to confront them to see the look on their face when you recount for them the hours, days, and months of endless pain you now live with because of their avoidable mistakes.
I believe I deserve an opportunity to tell her how disappointing it was – and continues to be for me – that a female physician was so dismissive of me when I described my pelvic pain symptoms. During my hospitalization, I tried, unsuccessfully, to share my medical history, and family health history, with her on the off chance there might be a relevant connection to something from my past or genetic ancestry. I want her to understand that just because a patient presents some symptoms for a particular illness that they could still very well have something else, and that the old saying of “when you hear hoofbeats, think of horses not zebras“ isn’t always the right medical diagnostic rule to follow.
The results from the first abdominal scans I had were unusual and shocked the Emergency Room doctors, but a lack of expertise meant I had to receive treatment elsewhere. However, once they admitted me to the second hospital the attending doctors seemed to be on a mission to contain my illness to a textbook diagnosis that was more common, predictable, and manageable, which over time proved to be wrong. The diagnosis wasn’t right, yet this doctor continued to work from her flawed viewpoint, while my health deteriorated with each passing day. Oddly, even with my physical decline and increasing pain, she was certain I wouldn’t need to rest for longer than a week after my release from the hospital before returning to work. I want her to know how wrong she was about that too because it’s been almost three years and I’m not any closer to going back to work and no one can see if or when that might be possible for me.
I also I want her to know how wrong she was for under-prescribing pain medication for my pain management and telling me that if I had a pain flare up outside her hospital clinic hours to go the Emergency Room where I could receive additional support. The Emergency Room staff and doctors at that hospital were not supportive. At best, during each of my pain-filled late night visits they thought I was there seeking more opioid-based painkillers and did the bare minimum to treat my pain. Once they read my hospital clinic chart, they didn’t order any more tests or investigate alternative diagnoses; they simply hooked me up to an IV to boost the effects of the painkillers. They then wrote more prescriptions for the same dose of those ineffective pain medications; and told me to go back to the hospital clinic to see the same doctor who was failing to manage my pain because she didn’t believe what she had incorrectly diagnosed could cause so much pain. Poor pain management forced my nervous system into overdrive to respond to the onslaught of pain messages from my body. Now, even with the higher doses of pain medications I take, my nervous system can’t do enough to calm my body or ease the pain.
Because of all of this, in my recurring vision , I am angry. However, the doctor is unrepentant and she falls back on the cliché that medicine isn’t an exact science. I imagine standing in front of her, while trying to ignore my intense pain; bewildered that she refuses to accept any responsibility for the errors that brought such significant changes to my life. Thankfully, my anger is broken by a moment of clarity when I realize that there is nothing for me to gain from such a meeting. Nor do I believe that someone who carries herself through the world with an air of superiority would gain from it. As this vision fades, I see the next person in a line of this doctor’s past patients waiting to tell her similar things, but I know she won’t hear them either. I walk away thankful that I found doctors who are willing to listen to me and understand that sometimes when you hear hoofbeats they are zebras.
Joni Mitchell – Both Sides, Now