Patient Perspective: How COVID-19 is Helping Everyone Experience Life as a Patient

April 1, 2020

Mary Elizabeth Williams is a cancer survivor, patient advocate, speaker, and author of A Series of Catastrophes & Miracles: A True Story of Love, Science, and Medicine

When you come into this world as a patient, you feel like you've been slingshot into an alien terrain... like everybody else knows what's going on, and you are completely without a compass.

"Does anybody else really understand what it's like to be this scared?” you ask yourself. “To be this overwhelmed, to be this confused, and not even have a voice, not know what to ask, what the right questions are?"

Due to COVID-19, we are in an unprecedented moment in all of our lives—in memory, in our personal histories. Every person on the planet will soon know what it is like to have your life turned upside down in a very short span of time. We’ll know what it is like to be terrified for ourselves, for the people we love, for our families, to face economic uncertainty and job loss. Millions of us know that now.

We are all learning that illness does not take place in a silo, that it is not a compartmentalized experience. These challenges grow exponentially when we are dealing with whole communities while juggling our own illnesses, jobs and parenting in new and unsettling ways.

It is very, very difficult to get a diagnosis or to live with a chronic long-term health condition. It is very challenging to leap into the unknown of a clinical trial or clinical trial enrollment. And then on top of that, the uncertainty of what's going to happen next with your trial or with your enrollment. It’s almost unimaginable.

My hope is that every single person on the planet—even those who somehow remain personally unscathed—never forgets this experience and uses it to deepen  his or her empathy. To deepen compassion, open us up to experience that moment of humanity in every single interaction we have. So that we can say, "I know what you feel like” and be telling the truth. To treat people not just as data points but as real human beings, scared and vulnerable.

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