To The Doctors Too Scared To Treat Me,
You attempt to fit me into a box—the box you learned of in medical school. It’s disguised under fancy medical terms much like you hide behind your white coat and wealth of knowledge. The box holds a diagnosis. A rigid set of criteria that every patient follows. Treatment is straightforward—black and white. Most fit into your narrow constraints…except for me. You review your list of objectives, checking off the ways I defy your version of sick.
I truly believe you know what you are talking about.
At least you think you do. My conditions are complex. The combination of symptoms are difficult to comprehend. One diagnosis inevitably effects another. It is hard to tell where the first problem begins and the secondary issue ends.
Hovering over my bed, perplexed, you ramble suspicions that are far from correct. I have lived in this whacky body for years. Part of defying the odds has meant developing a mindfulness of my health. Chances are, I already have an inclination as to what is occurring within these rebellious organs of mine. If only you would listen. I haven’t been wrong once. Perhaps that is beside the point.
It didn’t used to be like this.
I was not always automatically on the defensive with all who carry an MD behind their name. Suffering time and time again at the hands of medical professionals planted that seed of doubt. For instance, when I was 14, a rheumatologist tried to put me on harsh Methotrexate. He was apparently treating the “arthritis” my scans and labs gave no indication of. When I was 16 and in post-op recovery, the pain I felt was not my brand new GJ feeding tube, but a layer of my eye that was torn off from nurses heedlessly removing the surgical tape. And when I was 18, I went into anaphylaxis prior to my procedure because an anesthesiologist pushed regular Versed despite explicit instructions to use a heavily diluted preservative free brand. He did not alcohol the clave of my PICC line before administration either. The many inpatient stays where I received the wrong medication also replay in my mind.
Each traumatizing mistake could have been avoided.
That is exactly why I am so persistent in advocating for my needs. I do not intend to come across as rude or as a pompous know-it-all. In fact, I take great effort to convey myself in a gracious, polite manner. It’s just that I am no longer facilely trusting. My confidence in doctors must now be earned. While I realize you are only a man, I require a physician who’s focus is to keep me safe, yet human enough to treat me as more than an intriguing science project. I want you to want me to have utmost confidence in you.
As you finally admit you are not an expert…
You even apologize for the “it’s in your head” accusations. Blaming me was easier than declaring your personal downfalls. Still, your all-consuming power trips hurt. Do you really think I asked for chronic illness? For constant pain? To be rendered dependent on others to function and having my entire life seized before my very eyes? No, I did not.
I consult with you to get better. Not to have my physical care compromised. As you say sorry for the appointments that passed by with an air of indifference, the apology means a lot to my family and I. We are overcome with respect that you sat aside your imperious demeanor to analyze my case from a new perspective.
You have the ability to make or break me.
With a single signature or a hasty command, you have the power to revoke my life-saving prescriptions, my tube feeding supplies, or my IV nutrition. You can transform my condition from halfway manageable to complete and utter misery. However, I do not expect you to perform miracles.
I accept that you do not hold the magic cure. No pill will repair my broken DNA. No surgery will completely eradicate my symptoms. No therapy you suggest will allow my illness to cease from existence. All I am asking is that you do what you can to give me the best care possible. Prescribe whatever medication might relieve a fraction of my discomfort. Keep me out of an emergent situation. And if you are absolutely at a loss, a compassionate ear goes a long way. I appreciate the smallest of pursuits.
I realize you are scared.
The slightest error on your part is potentially catastrophic to patients like me. Afraid to move forward, you become paralyzed with fear. My treatment is dictated by the wait and see approach because you are scared to do anything that might cause my condition to worsen. I would never condemn you for trying. The fault lies in not trying.
I imagine the unpredictability is terrifying for you, but I am scared too. It’s not necessarily reassuring to find your gaze switching from me, to the vital monitor, then back to me again before your subtle steps toward the hospital door communicate the obvious.
This is my reality. Sometimes life with chronic illness feels like living a bad dream—a nightmareI cannot wake up from. While you do not have all of the answers, you do make an impact.