Life keeps buffeting the patient diagnosed with several chronic conditions, like continuous incoming and outgoing mammoth ocean waves flooding over one’s body, raising you high up into the air and then sucking you downward, a struggle to keep your head above the water for survival. There is no rest, true calmness, or time to catch your breath.
My time is dictated by scheduling appointments with my doctor, who then lends me out to the necessary specialists to consult and treat those idiosyncrasies in my health that can’t be easily defined or treated. Then there are the necessary tests to be endured: MRIs, CAT scans, ultrasounds, and X-rays. Stretching out my arm to have vials of my life’s blood drawn out and sent off to be analyzed. The elastic bandage wrapped tightly around the site, my “red badge of courage.” White hospital ID bracelets heaped in a pile on my nightstand, again reminders of my courage to endure what needs to be endured.
Time passes slowly, awaiting results. The anxiety is always there, waiting in the shadows; it’s the last thing you think about when you finally doze off at night, and it’s the first thought waiting for you when you open your eyes in the morning. It’s like having a case of PTSD, having to deal with multiple diagnoses that, at any time, could bring down the curtain on your life. It’s like sitting on the edge of a cliff and praying a big gust of wind doesn’t blow you into the abyss. But who else, besides me, does this time in limbo bother? I fear I might stand alone.
The calendar is not always my best friend: Family vacations and trips to visit relatives must be scheduled around those red-circled days on the calendar. Do you, my physician, know the heavy burden on my heart? You sometimes seem detached and emotionless as you read off the summary of the results, looking at the charts on the EHR and glancing at me to see if I’m listening. Is this what you were taught in medical school, never share your emotions with your patients, never be too empathetic? Funny thing, you are a human being, too, and I will respect you more if I feel that you understand what I am going through and that I am more than a total of my diseases.
Maybe I am too hard on you, for I sense you are also under duress. With so many patients filing in and out of the exam room, there is an urgency to attend to all because the day keeps slipping away, and you are accountable to those hidden faces in hospital board rooms that make sure you tow the company line. The burden weighs heavy on you as the click boxes repeatedly appear on the computer screen, and you must attend to them and me.
Maybe you and I are sitting on the edge of a cliff, praying that a big gust of wind doesn’t blow us over the edge. I will hang onto you if you promise to hang onto me.
Michele Luckenbaugh is a patient advocate.
