My doctor had the education, the title, and that fancy framed diploma on his wall, but he did not have my body.
When something is prominent in your mind, you’re susceptible to noticing that “something”more often. You can easily associate behaviours or situations as direct results of that “something” that you’ve become so acutely aware of. It’s called confirmation bias, a term coined by the English psychologist Peter Wason in the 1960’s, and it presents itself daily. My distrust of doctors is a very prominent bias in my mind right now and I have begun to see this distrust everywhere: in strangers I speak with, through cancer survivors I’ve met, and in tales I’m hearing for the first time from friends and family members. Stories about such a severe misdiagnosis, I want to scream HOW DID THEY NOT LISTEN TO YOU!
For more than a year I would return to my doctor begging for some kind of diagnosis that would validate the very real pain I was feeling. but my family doctor never helped me when it was most critical. It was the same routine every visit. I would explain my symptoms: continuous loss of strength, increasing sharp and dull aches of the joint, and a general regression in the mobility of my right arm. He would ask me to stick out my right arm, hand open and palm facing straight ahead parallel to his. I would have to push against his resisting hand: upward, downward, left and right. It would get increasingly difficult every time I had to perform that ridiculous exercise with my doctor. I cannot fathom the amount of times I must have repeated that the pain I felt was deep inside my bone- an ache I had called it- but he focused on my muscles. He would repeat that it was my Rotator Cuff. He would repeat that the issue was a strained muscle. He would repeat that I simply needed to rest and stretch it. Maybe he had seen such an injury so often that the confirmation bias was in effect, but all that perception did was repeatedly ignore the tumour that was growing in my shoulder.
My doctor placed me into a little perfect box constructed by typical symptoms and a general diagnosis. “Shoulder pain in a 20 year old female. Diagnosis must be the most common possibility regardless of whether this individual’s life activities actually suggest this type of injury…” I sat in that box until it was unbearable, but I was in that box long enough that the proper tests were neglected, and any complaints of pain became irrelevant. My tumour began as the size of a pea. It grew so large that it had extended out of my bone and wrapped around my humerus. Chemo couldn’t shrink it enough and removing my humerus and the majority of the muscles in my upper arm was the only safe decision.
Those little fucking diagnosis boxes are very prominent in my brain. Maybe that’s why my ear is more attuned to stories like mine. Stories about other people being rushed through the doctor’s office, their beliefs about their body ignored because they’re shoved into that little box of a common diagnosis. I hear them everywhere as if their old wives tales you hear from your mother. A family doctor, tells you it is nothing serious and places a prescription for pain killers in your hand. Months later you’re scrambling to cope with a diagnosis that you didn’t think possible simply because you trusted your doctor. My situation has taught me maybe it isn’t that easy anymore. We have question that trust.
The first story I came across was while I was working part time in a retail store. A woman approached me cautiously and asked if I was receiving chemo. The fact that I was bald, was no secret. I wore it proudly as I believe all women should but I know from experience that shedding the wig isn’t that easy. After briefly discussing my story she began to tell me that her husband had gone through radiation treatment, but had passed away recently. Her husband felt as though something was not right with his body, but his doctor told him otherwise. He ignored any discomfort or sickness he felt because his doctor had assured him of his good health, so he looked for no further treatment. When the tumour was found in his lungs and throughout his limbs after a life insurance physical, they were denied because her husband was extremely ill. It had speed so aggressively, they gave him an amount of months alongside a treatment plan.
The woman who supplied me with medical marijuana throughout my chemo process introduced me to her aunt who at that time was a sickly woman lying under a mound of blankets on the couch. Her aunt’s story was eerily similar to mine. She went to doctor after doctor complaining about a pain in her upper arm. She was sent away time after time, being told by doctors that it was a strained muscle because “it didn’t sound like it could be anything else”. Her lung cancer had reached stage five when they had finally properly diagnosed her, and she passed away shortly after I had met her.
At my new job, my co-worker recently told me about her son who was in an immense amount of pain and discomfort in his stomach. Their doctor sent him away informing him he probably had food poisoning. Within three days her son’s pain increased significantly and they brought him to the hospital with an appendix that had already burst and was threatening her sons life.
Another co-worker discussed a family friend who went to her doctor complaining about a lump she found in her breasts, but he told her nothing was wrong and attributed it to her hormones and her imagination. A few years later she was diagnosed with stage four breast cancer. Sadly, this same doctor sent another patient away: a male away who complained about a lump in his breast tissue. However this man trusted his body and he went back to that doctors’ office until he received the tests he wanted. It was breast cancer.
My own aunt (who is also a cancer survivor) was vigilant in returning to her doctor once she noticed a lump on her lip since her medical history had contained a rare type of cancer. She was told it was a zit and to let it go away. She has now had surgery on her upper lip to remove the skin cancer, but not after fighting for the treatment she required.
I could tell you many more stories of a misdiagnosis resulting in a critical disease or end of life. I don’t want to though. I don’t want to hear any more stories like that, let alone tell them to you.
It makes me feel as though we are being let down by our doctors. Am I supposed to accept that helping people comes secondary to the apparent need of rushing patients through the office and allowing them to discuss one issue per visit as a solution to long wait times? Or am I supposed to understand that money is the altruistic desire for some doctors? Has the monetary aspect of the profession become more appealing to aspiring doctors than actually making sure people receive the treatment they deserve? I don’t have the answers but I do have the opinion that we now have to trust our bodies more than our doctors.
My doctor had the education, the title, and that fancy framed diploma on his wall, but he did not have my body. He did not experience the pain and restrictions that had begun to affect me daily. He did not take this into account, or listen when I was positive that the source was my bone rather than my muscle. His excuse at the end of it all was “It is just so rare, I didn’t think to check for that”. But is that approach helpful? Could that approach save someone’s life? Was it simply easier to assume that whatever his medical textbook associated with my symptoms had to be the diagnosis regardless of my returned visits, and escalating pain?
I listened to my body, and it was right. But what use is that when you have a doctor that does not listen to you. Everyone’s body, no matter how similar in functioning, has the potential to react diversely to the same stimuli. Two people can take the same medication, but one of them may experiences the negative side effects, while the other gets better. We are not supposed to fit into those static boxes of healthy or unhealthy. We shouldn’t be defined by categories with no grey areas. We shouldn’t be sent away without the maybes being investigated. When our lives are the topic, it shouldn’t just be you’re sick -with the most common diagnosis associated with your symptoms- or you’re fine.
What resonates with me the most about the lack of proper treatment is that I know my doctor better than many of you may know yours. He works with my uncle and I’ve clinked glasses with him at my cousins’ weddings. I trusted him, Why didn’t he trust me? Why didn’t he send me for the MRI like I had asked? Why hadn’t he exhausted every option rather than settling on a diagnosis and sticking with it? Why hadn’t he believed me when I said that I was sure it was my bone? Again, I don’t have the answers. I can only infer that some sort of confirmation bias was in effect. The more that I returned to him with complaints, the more it confirmed that the issue was with my rotator cuff. He likely would have seen that injury so often in active females which would confirmed that I was just another example of it. I fit so neatly and so perfectly into that tiny box of what’s typical.
So do you trust your doctor or do you trust your body?
The error in my story is that I did not trust my body enough to challenge my doctor’s opinion. I was content sitting in that little box neglecting the messages my body sent daily like a needy boss.
It is natural to ponder the “what ifs”. I do think about how different my life could be if I had pushed him harder and refused to take no for an answer. If I accused him of improperly caring for me, would I have a functioning arm? Except, I didn’t anything but follow his orders and give up when I was sure nothing or anyone could help me.
Returning to the core question of this post, I believe you must trust your body above any advice you’re given. You’re doctor does have the tools to properly diagnose you and I believe that advocating for your health should be the iron that sharpens those tools. You should trust your doctor, but you should trust your body more.
Gale, Maggie; Ball, Linden J. (2002), “Does Positivity Bias Explain Patterns of Performance on Wason’s 2-4-6 task?”, in Gray, Wayne D.; Schunn, Christian D., Proceedings of the Twenty-Fourth Annual Conference of the Cognitive Science Society, Routledge, p. 340, ISBN 978-0-8058-4581-5, OCLC 469971634