For some people, the only life they’ve ever known is full of suffering, disease, and pain. I am not one of those people.
I was born a healthy baby in December 1983, and for most of my childhood, I stayed that way. I never broke a bone and I rarely got sick. I did contract chicken pox alongside my brother when I was in kindergarten. Although we were itchy, we sure were cute–two dark-headed, pale little kids with matching red dots all over us. My mom couldn’t help but take pictures.
In 3rd grade, an unfortunate run-in with the bathtub opened the door for my first ER visit. I left with stitches and a permanent scar that still runs through my right eyebrow. But after that incident, I had no need to return to the hospital for many, many years.
Throughout my childhood, I was rarely a patient. I lived a very healthy life through an unconscious filter (of which I had no idea), until a few weeks after my 17th birthday. There I was on a Tuesday night, working at the local library when my parents walked in to give me the news–I had stage III colorectal cancer.
It would take years for me to realize I lost more than my innocence, my youth, and carefree living that night–I also lost my “health privilege.”
Fellow ePatient Carolyn Thomas wrote on the idea of healthy privilege in a column for Center for Advancing Health, where she quotes Dr. Becker-Schutte who adapted the definition of white privilege to explain “healthy privilege”:
Like many other social privileges, those living with a “healthy privilege” are often unaware of it. Because this concept is not often discussed, those living without a “healthy privilege” are often unaware of it as well.
We recognize the irritations that nag us when our lives must be adapted to chronic health conditions and “new normals.” We accept the need to budget to afford medical supplies and procedures. We pack in case something goes wrong. Even the way we schedule vacations is oftentimes different from those who don’t think twice about booking a non-refundable trip!
Yet, we’re often unaware that our lives operate so differently from others–not because of the surgeries and scars–but because of this concept of privilege.
I didn’t realize I was grappling with the loss of my “health privilege” for many years. I hadn’t realized I needed to permit or allow myself to be okay, that my life would always look somewhat different from others who’d never faced the loss of health. In all honesty, it took sitting on a comfortable couch, across from my counselor, who helped me see what was happening.
“We can easily take health for granted and miss what others are experiencing when we don’t realize we carry a health privilege,” said Barbara Lucas, MS, LCMFT. “The lives of those who’ve experienced a loss of health can look very different from the lives of those who’ve never experienced it.”
Talk about a lightbulb moment! Not only did life start to make sense again, but the anchor of grief that sat deep inside of me finally began to come up.
These days, even though it’s without the “healthy privilege,” I live with peace. I appreciate being unique and cherish the empathy it has brought me for other patients and families. I hope they too can find the words to articulate the depth of their loss–it’s a powerful experience and one that’s given me a lot of mental and emotional healing.
I also hope providers will extend the utmost patience to those filling up their waiting rooms. The experience of being a lifelong patient cannot always be articulated through charts, questionnaires, and forms. The patient experience goes deeper than needles, tubes, tests, or procedures. When dealing with a life-altering and/or life-threatening medical situation, we’re not just talking about sickness or health…we’re actually dealing with privilege.
Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.
About the author: Danielle Ripley-Burgess was first diagnosed at age 17 and is a two-time colorectal cancer. She is a content strategist with the advocacy organization Fight Colorectal Cancer. Surviving cancer, parenting a biracial adopted child, and marrying her high school sweetheart give her plenty of stories to share on her blog at DanielleRipleyBurgess.com. Find her on Twitter at @DanielleisB.