Why is it that a white lab coat carries so much importance in our society. Its like the white lab coat immediately entitles the wearer to a predetermined amount of deference. We let the credentials of a stranger, replace our instincts, solely because of a lab coat. Our instincts scream to be heard and acknowledged, but we quiet them with “but I’m not a doctor.” Now, don’t get me wrong, I believe doctors are very important and deserve respect. They have the expertise and training that most people do not have. But, I don’t believe that doctors deserve blind deference. I think the doctor/patient relationship is actually a partnership. A partnership in which both people exchange concerns, ideas, and recommendations. Sadly, not all doctor/patient relationship function this way.
My morning started like so many other mornings. The alarm sounded and I rolled onto my back and looked up at my ceiling fan. I immediately felt my usual aches and pains, but smiled when I noticed the sun beaming down onto my bed. I slowly rolled out of bed, and made my morning walk to the shower to prepare for my day. After successfully getting dressed and seeing the kiddos out the door, I jumped into my car to make the drive to work. As I drove into work, the inside of my car was completely silent. If you are a parent then you understand just how beautiful this was. As I drove in silence, I collected my thoughts and mentally prepared for the day. Suddenly, my silence was interrupted by an unexpected phone call from my new GI and his NP.
I accepted the call on my car’s bluetooth and cautiously joked “I feel special getting such an early morning phone call.” My GI and his NP began asking me questions about how my Crohn’s manifests, and verifying my recent scopes and labs. While I was still mid-sentence, my GI said, “see, these symptoms are consistent with something else.” I immediately stopped talking, and started to try and absorb every word I heard. In my mind I repeated each word “see”, “these”, “symptoms”, “are”, “consistent”, “with”, “something”, “else”. Amazed by each word, I pulled to the side of the road to give the conversation my undivided attention.
Once I was safely parked, I began thinking to myself. “Could this be it? Could this actually be happening? Could this be the day I have dreamed about? Is today the day the doctor tells me they were wrong and I really don’t have this awful disease? Will they say this is a simple infection and a round of strong antibiotics will take it all away? Or, will they say that this doesn’t require medication at all?” As I asked myself questions, my mind began to show me visuals of a life without Crohn’s. Suddenly the phone conversation seemed so far away, and all I could hear and see was myself playing basketball like I used to. I saw myself riding my bike for hours liked I used to, rather than spend every 6 weeks at the hospital for Remicade infusions. I saw myself at the spa, and weekly manicures replaced my weekly methotrexate injections.
My GI and his NP must’ve noticed that I had mentally drifted away, because the NP loudly cleared her throat to get my attention. Apparently the phlegm in her throat didn’t move, so she cleared it again. The second time must’ve been enough, because she sternly said “oh no, let us be clear. You definitely have Crohn’s. We just think there is something else we are missing, possibly something else autoimmune.” Shocked by this abrupt interruption of my daydream, all I could muster was a very confused “what”.
Without providing insight into this “something else”, the GI and NP listed approximately 7 tests they intended to order for me. The GI then gave me instructions on where to report for my tests and the relevant times. Not once did he or the NP ask my thoughts on the proposal, so I waited patiently to state my objection. I sat quietly as they gave each other verbal high fives for their recent discovery. When there was finally a pause and silence, I cleared my throat and flatly said “no.” The GI’s timid “um” demonstrated his shock. It was clear that neither was used to a patient rejecting a recommendation. Amused and empowered, I repeated “no”. On a roll at this point, I continued “I’m a person not just a body that you can order to report for tests or procedures. This is not a episode of House, this is my life”. Determined to take full advantage of the silence, I continued “we will talk all options, weigh risks, and decide appropriate next steps as a team.” The GI quickly said “of course, of course”, as if that was the intent all along. But, it was clear that was not the plan until I spoke up. It was also clear that my “team”, was no team at all.
Once we got into the details of what the GI hoped to find, it was clear to me that the proposed tests were premature. While medically necessary, the tests would be inaccurate and very painful on the heels of a flare. So, rather than accept the initial proposal, I pushed back and asked for alternative options. I was floored to hear the additional options that did not involve me being sedated or incapacitated for several days. While the conversation was brief, it was a well needed reminder. A reminder to never be too intrigued by or afraid of a white lab coat to advocate for yourself. Never be too tired to participate in your care.
The conversation was also a lesson for the GI and his NP. They learned that not all patients are the same, and practicioners have to tailor their care. They also learned that patients are still people, with their own thoughts, concerns, recommendations, and ideas. Patients are not just bodies to be instructed on what meds to take and places to appear for tests. Patients are valuable team members, and should be treated as such.
Friends, if your doctor does not encourage you to push back or ask questions, immediately kick them off your medical team. If your doctor is “too busy” to be bothered with questions, you should see someone else. You are responsible for understanding your condition and actively participating in your own care. While doctors have the medical expertise, that body is yours and yours alone. Effective care starts with an effective team, and that team MUST include you.