By Francine Maloney
“I’m doing pretty well.”
That’s not the response you expect to hear when our world is facing the largest medical crisis of our time. You might think the speaker is either lying or in serious denial.
But surprisingly, some of us with serious and/or chronic illnesses have been answering with these words during these last few weeks.
This may sound strange, but this COVID-19 craziness has not seemed all that different for me. Of course, things are definitely surreal, but it has not been different emotionally or mentally.
That’s because I’ve been living in a state of uncertainty for almost all my life. And I believe my lived experience has some invaluable lessons for dealing with uncertainty, which others may find helpful during this unprecedented time.
Living in Uncertainty
I was diagnosed with Complex Regional Pain Syndrome at 12 years old and severe gastroparesis secondary to pain at age 30. I must add that I have been privileged with the medical care I have received along with the health insurance I have always had. Although I have two chronic illnesses, I have remained incredibly healthy for the majority of my life.
Over the past few years, however, the gastroparesis started to take its toll, causing uncontrollable weight loss. In the fall of 2019, my health care providers and I decided to take the next step of placing a feeding tube, so I can continue living with the same quality of life I have always had.
This decision began my life of two-week increments. A week before Christmas, my health care team and I planned an admission for just after the holiday, after which I needed to schedule a permanent feeding tube placement. Thankfully, I did not need anything urgently, and therefore waiting two weeks was safe. When the feeding tube placement procedure was unsuccessful, I needed to then schedule an appointment with a surgeon. Due to multiple unforeseen circumstances, this, too, needed to be rescheduled a couple of times. Finally, my surgery was scheduled but due to COVID-19 was cancelled, and the uncertainty around my care continues indefinitely.
Throughout this time, I’ve known big lifestyle changes were coming. I would feel anxious, trying to envision and prepare for what my new normal was going to be. I would often think about the smallest details, such as how I would be able to wear a winter coat with a tube and pump attached to me all the time.
I’d been here before, when anxiety overwhelmed my thoughts — during high school, when I needed to use a wheelchair due to my pain. So I knew that while it’s OK to remain anxious for a little while, these feelings and thoughts will resolve once things finally change and I can adapt.
Within the first week of socially distancing due to COVID-19, I recognized I was using this same lesson daily but due to a new kind of uncertainty.
My story is not unique. Patients who have survived cancer, who are receiving dialysis, who are awaiting transplants, and so many more have lived this life as well. What our experience has taught us is how to survive during some of the most uncertain times.
Just as I was living in anxiety in two-week increments at the beginning of this year, COVID-19 has pushed all of us into a similar state over the last month. Now, we are all living in increments. We have been given time-based increments for social distancing, which continue to be extended much longer than any of us anticipated. We are collectively trying to envision what our new normal will look like once this is over.
As I saw my friends, family, colleagues, and neighbors struggle, I began to share a few lessons I learned from my own experience living in uncertainty.
Acknowledge that it sucks
It just does. It’s nice to be optimistic or find the silver lining, but it’s also important to acknowledge the truth.
Recognize your adaptability
Think back on your life for when you’ve needed to adapt to something before. Maybe a new school, job, when you became a parent, or after being diagnosed with an illness. You have the ability to adapt, even if it takes some time.
Identify what gives you strength
We all get strength from somewhere or someone, and in times of uncertainty it’s even more important to know what we need. Is it your faith? Family? A friend?
Expect bad days
You might find yourself crying and have no idea why (see lesson #1 for why). Remind yourself that you have the ability to adapt and rely on what gives you strength.
Your mental boundaries may need to be adjusted. Maybe people are asking even more of you right now; this is very true for those working in health care, grocery stores, public health, and restaurants, or for parents-turned-teachers. Or maybe hearing about COVID-19 all the time is just too much. Whatever it may be, set your boundaries to protect your own mental and physical wellbeing. Yes, that may even include turning off the news, taking social media breaks, or telling your family members you can’t listen to anything else about COVID-19.
Reach out for help (and don’t apologize)
If you find you’re having a really hard time, reach out to a trusted friend, family member, mental health provider, or medical provider. They’re all there to help.
So, how am I surviving through COVID-19? I go on walks. I reduced to 50% at work per my doctor’s request. I’m watching Netflix, keeping my medical appointments via telemedicine, and laughing at my nephews as they read to me over FaceTime. Above all, I’m relying on the knowledge that I’ve been able to live in uncertainty for this long, that bad days end, and that I’m very good at adapting.
Now, how are you doing?
Francine Maloney is the Assistant Director for the Implementation Platform at Ariadne Labs. In this role, Francine facilitates the use of implementation and improvement science methods to accelerate the ideas of our teams and faculty into solutions. She also leads the strategy efforts in integrating patients and caregivers into Ariadne Labs’ work as well as serving as the senior ethical advisor to our faculty and staff.
Header illustration by Courtney Staples / Ariadne Labs