Sitting in Discomfort: Finding the Thread of Hope

Posted By Tiffany Christensen, CPXP, Monday, July 13, 2020

The week prior to Sunday, April 19, 2020 was a pretty normal week other than the adjustments that came with the early days of the COVID-19 pandemic. I worked, and I walked my dogs and I did all my normal activities. I was tired, itchy and, from time to time, queasy. As a person with kidney disease, though, none of these symptoms rang any alarm bells.

Things really started to change on Friday. We had a strategic planning meeting at work, and my mind was blank through most of it. I told myself I just needed more rest. On Saturday, the nausea had intensified, and I slept much of the day. A friend came over to provide support. By Sunday, I was having problems forming sentences and had frequent nausea and a feeling of being “out of body.” I kept thinking I could push through it—I mean it was a pandemic out there, after all, so shouldn’t I stay away from hospitals? But it became apparent that I needed medical help, so I called my doctor and she arranged for me to come in.

Luckily for me, the COVID-19 crisis in my part of North Carolina was not yet severe, so getting admitted to the hospital was not as scary or difficult as I had imagined. By the time I got to the ICU step down, I was struggling to find basic words and began having severe spasms in my tongue, legs and arms. These spasms made it more difficult to speak. I dropped most items I picked up and had a fall in the bathroom. Emergency dialysis started the day after I was admitted, but it did not offer immediate relief as I fantasized that it would. 

That week was one of the hardest in my life. I truly thought I might not make it out of the hospital. I suffered some of the worst, unrelenting nausea I have ever known. When I did speak, the words took all my might and were punctuated by long, painful pauses. I could not advocate for myself because I was just too sick. Luckily for me, I did begin to stabilize and was discharged home one week from when I went in. Today, I am on dialysis three times a week and hoping for a living donor transplant from my sister.*

Those days in the hospital were so intense. They are in my mind like it was just yesterday. The physical difficulty permeates my memories, but so too does some of the interactions I had with staff and clinicians. Because my symptoms were so severe, I found many of the people in and out of my room were unable to really be present with me. To provide some examples of what I mean, let me share two little stories.

1)      I mentioned earlier that I fell in the bathroom. After I fell, I cried. Hard. This was just the straw that broke the camel’s back. The nurse assistant who helped me back into bed was visibly unsure of how to handle my emotion. She patted me on the back and said, “I’m glad you’re doing ok” and left the room. I had not finished crying.

2)    For two days I had extreme nausea and vomiting. I had my head in a basin for more time than not. On at least eight or nine occasions, different providers came to see me, and I was actively using the basin. They asked me these questions: “Are you doing ok?” and “Are you nauseous?” Some people became visibly frustrated because I wasn’t answering their detailed questions about going home, symptoms, etc. 

I attribute these interactions to a few things. First, of course, the people working in healthcare today are experiencing an intense level of pressure and overwhelming fear due to COVID-19 and all that comes with it. Many of the people I encountered in the hospital were very new to the profession and many were working on a unit they had never worked on before because seasoned pulmonary providers had been moved to the COVID-19 care areas. These circumstances would make anybody uneasy and focus more on tasks to keep the patients safe than interactions with the patients themselves. All of this is valid. But I also believe there is another layer, a layer deeper, at play.

Somewhere along the way, in the US at least, we have become a culture in which personal discomfort—emotional or physical—is regarded as something to avoid at all costs. In some ways, we have become so attached to being comfortable we have developed a low threshold for discomfort or pain; even if it’s not our own. While all of this is worthy of a broader conversation, I have experienced this cultural tendency reflected in the interactions I’ve had with my healthcare providers (and I have seen it with the patients and families I interact with as well). This makes me wonder: if healthcare is not a place where we can sit together in discomfort, where might that place be?

As COVID-19 continues to surge across the US and we dig deep into addressing systemic racism after the murder of George Floyd, this question of sitting in discomfort seems much more important. If we want to truly move the needle and make healthcare equal for all people, we must be willing to have uncomfortable conversations about slavery, white privilege and unequal distribution of power. If we authentically want to support healthcare providers who have been traumatized by their experiences working through the COVID-19 crisis, we will have to put away the words “brave” and “hero” so that we can hear their reality and what they need. As we look to the future of improving patient experience, we will need to be open to listening to the patients and families who have faced COVID-19 and those who had to be placed in a holding pattern despite needing or wanting care.  

So, what’s the good news in all of this complexity and heartache? These don’t have to be separate efforts. The skill set is the same. We are all asking for much of the same things. We are asking for other humans to be present with us as we experience the challenges of our humanity. We are asking other humans to sit in discomfort and listen without deflection or interruption. We are asking other humans to seek out our lived experience in the interest of doing better. We are asking this culture to place a value on leaning in rather than stepping back, cultivating compassionate curiosity rather than giving in to the ease of avoidance.

And do you know why I am excited? Because I see it happening. All around me people are going deeper into their personal awareness. They are looking at the world with new eyes and committing to taking on bold challenges for change. Organizations all over the globe are learning from COVID-19 that healthcare is far more agile (telehealth, anyone?) than we ever gave it credit for. The murder of George Floyd has made “systemic racism” a matter of fact rather than a debate. Working at The Beryl Institute, I am inspired to wake up every day to be a part of the discussions and programming that pushes for true innovation and equity.**

May we find our way to a new existence where compassion is no longer a topic we need to teach, the love between staff/providers and patients/families is a given and healthcare is equal for all people. May we all find the thread woven through so many of today’s challenges, lean into the discomfort and, in turn, create hope for authentic change.

*If you’d like to follow my sister’s and my non-matching living donor journey, you can find me on Twitter at @sickgirlspeaks.

Tiffany Christensen, CPXP
Vice President, Experience Integration
The Beryl Institute