Trapped in the Portal

Instagram. Doordash. NPR. All of these examples are apps one can download on their phone. They have different, perhaps purposeful functions, we use to gauge our daily lives. As someone living with a chronic condition, the power of one particular app stands at the center of my attention - my medical portal.

The hub of the patient experience is all tied into one app. I can message my physician, create appointments, pay bills, and answer almost any question I have. It is an advancement in medicine that is revolutionary. However, for me, in the day of instant gratification, the medical portal has skewed from being efficient to being paralyzing to my overall health.

When you first download the app, you are asked whether or not you would like to receive notifications. Of course, for medical purposes, I thought notifications would be valuable. Then after one of my blood draws, I received a notification, saying my test results were ready to view. My first thought was “wow, this is neat”. Even so, when I opened the notification, I saw an oddly crypted interpretation of ambiguous numbers that either were good or bad. I had no clue what I was reading, which didn’t subside the fear those numbers brewed in my mind. I brushed off the incident as something I was “over-worrying” about and continued on with my day. Then, later that same evening, sitting in bed, I received another notification about a test result. I opened it. The test results were abnormal.

I became frantic. I looked up the test name, sifting through the literature to elucidate what the result would mean for me. Of course, my doctor’s interpretation of the result was included in the test result, but was fague and didn’t provide comfort. My partner noticed my stress and asked what was going on. All I could say was, “I have no clue”.

I did not receive a call from my doctor till days later, but the damage was already done. Did I have cancer? What major surgeries would I prepare for? How did this change my life?

Unlike the simplicity of allowing for notifications to be sent through my portal, the complicated nature of medicine could not be boiled down to a set amount of characters or displayed in such a way that a layman like me could best understand what was going one. There was not a warning label that went along with the app saying, “This app may cause mental distress”. However, I can tell you, I was feeling it for sure.

I’ve had the app for over a year now, and because I still regularly go to the doctors, I receive those notifications at a nauseous pace.

One of the worst things about the app is in the test results. There is a red circle with an exclamation mark within it, noting when a test comes back abnormal. It is a warning of “be careful before you open because you might not like what you see”. I feel ashamed that my body produces negative results. The app doesn’t comfort my wandering thoughts, fearing the worst.

Sitting in on meetings with physicians, the ramifications of the app have been felt in full force. One story included parents rushing their child to the emergency department because their lab results were out of range. The emergency department worked them up for everything, and of course, the specialist physicians who oversaw their care were paged, explaining to the parents that the results were nothing more than simple variability based on the child’s condition. How do we beat the speed of an app? How do we overcome the emotions attached to the easy dissemination of complicated medical information?

I am trapped in the portal.

I could turn off notifications for some sense of peace. I could take the radical step of deleting the app, which probably would immediately backfire. I could trust my physicians and not worry about the results, yet I don’t think this is an ideal world.

I was raised in the world of technology, where I received my grades on the web and college applications via email. These big life moments were captured on a screen. I was the consumer of outcomes beyond my wildest dreams. I can’t hold the email in my hands. There is a sense of humanity when I can sit in a physician’s office and listen to the tone of my doctor as they explain the results. They could watch in real-time my emotional reactions, and perhaps understand just how difficult this process was for me.

My health is in the palms of my hands in a digital device that doesn’t smile back, doesn’t cry, doesn’t react - merely functions.

I can’t escape my health. For the time being, I can’t escape the medical portal.