As a person who lives with cystic fibrosis and has had 2 double lung transplants, I have experienced many stages of illness. I have understood from a very young age that having this illness is something people feel badly about and sometimes even wonder why “bad things happen to good people.”
But what if we have it wrong? What if illness isn’t the worst-case scenario? What if instead of looking at me with pity, I should be looking at you with pity because you don’t see what I see?
In my lifelong career as a patient, I have had people respond to me in all kinds of ways. The reactions were more pronounced as I grew sicker and they reached their peak during the time I wore oxygen. When I was wearing oxygen, some people would stare, some people would look away and others would approach me and say things that often caught me off guard. One man in Target said, “You shouldn’t have smoked so much.” One woman in Macy’s said, “I’ll pray for you.” My cousin asked, “Why would God do this to you?” Almost all of the people I encountered said—with their eyes— “You poor thing, I’m so glad I’m not you.”
While the intentions were almost always good and the reactions easily explained as a reflection of each person’s internal relationship with life, death and uncertainty, none of them ever hit the mark. Nobody I came across ever reflected back to me what my perception of myself happened to be.
I felt physically weak, yes, but everything else about me felt strong. I felt connected to the universe, I felt a strong understanding of my purpose in this world and I felt lucky to have the lessons of illness laid before my feet day after day. The very last thing I wanted was pity. If anything, I would have liked admiration.
Imagine for a moment a patient laying in a hospital bed. They are curled up slightly around themselves, pale in the face and not very interested in interaction. Imagine walking in to see that patient. What might you think? What words come to mind? Vulnerable? Sad? Weak?
Now imagine walking into that same room with a very different lens. If you could see into that person’s mind, what do you think you would find there? Simply because they are not talking does not mean they aren’t thinking. Just because they aren’t emoting does not mean they aren’t feeling. So why are they so quiet? What are they doing?
They are enduring. They are bracing themselves against pain or discomfort. This takes energy and concentration. This takes a great deal of STRENGTH.
What if, like a marathon runner grimacing as they finish their final miles, we looked at the patient curled up in the bed and did not see weakness but, instead, saw determination and grit? What if we encouraged them, like we would do on the sidelines watching athletes riding their bikes in an Iron Man, telling them “You’re doing great! I know it’s hard but you’re amazing!” What if we stopped pitying people who are sick and saw them as people we could learn great lessons from? How would this change the way we deliver our healthcare?
Being sick is often an isolating experience. Not only because of the physical symptoms that limit our ability to live an active life, but because of the perception of weakness others project onto us. As I shared earlier in this post, during the time that I wore oxygen, I had a lot of comments from friends, family and strangers about my appearance of health. What I almost never received were questions. I longed for questions rather than statements. Here are just a few that I would have liked to hear:
- “I know you have bad days and better days. On a scale of 1 to 10, what’s today?”
- “Is there something I could do right now to make your life a little easier?”
- “I want to support you and I’ve never experienced anything like what you are going through. Can you help me understand what life is like for you?”
- “You know I love you and I worry about you, but I’m feeling strong today. Is there anything you want to talk about that you’ve been keeping inside because you were afraid it would be too hard for me to talk about?”
And then there is this one statement I longed to hear:
- “Caring for you while you go through this illness is really hard. Sometimes I get sad, angry…you name it. But, I want you to know, I wouldn’t trade it for the world. Having you is worth every second of this struggle.”
The internal world of sick people isn’t always going to match mine so this is by no means a prescription. At the same time, nothing bad can come from seeing patients differently. If you see them as strong, perhaps they will gain more strength. If you ask them questions, they may not always want to talk about it in that moment, but they know where to go when they do.
Illness forces us to focus on what matters in this life. Let those who live with it be our teachers while we admire them as they take on their personal marathon. I hope you can begin to see what I see and watch how it shapes the way we deliver care.
Vice President, Experience Innovation
The Beryl Institute
Planning to attend the IHI National Forum later this month? Join Tiffany Christensen’s Keynote session with Dr. Rana Awdish, MD, lead by IHI President Derek Feeley, as the two women touch on how they are using their patient experiences to improve healthcare. You can also join Tiffany during Sunday’s Learning Lab, the CEO Summit and her “meet the author” luncheon.