Redefining Life as a Patient and Caregiver : Experts by Experience 2018

Parenting and caring for a child with a medical condition challenges Erin Moriarty Wade. She writes,

“I know that the patient experience begins long before you meet the doctor. I know that sometimes even parking your car can become a big part of that experience–especially when you have to park at a distance with a cranky toddler in a stroller, and a child hobbling in pain. I understand the fear that patients may feel, and I appreciate the role of the oft-forgotten caregiver.”

Early on, John Novack, Inspire’s Director of Communications, recognized that the experience patients and caregivers gained by living with medical conditions and navigating the healthcare system gave them unmatched expertise. Patients and caregivers are the authorities. Since 2014, Inspire has published a compilation of patient and caregiver stories. This year, Experts by Experience is produced in collaboration with Mayo Clinic Connect.

Experts by Experience 2018 continues to honor personal histories. Four of the narratives, including Wade’s, address the profound need of caregivers for support. Renata Louwers exhorts others to remember the exhaustion caregivers carry in recounting the relief she experienced from a small kindness by medical personnel while caring for her dying husband. Harriett Hodgson’s self-care strategy to remain healthy as she cares for her disabled husband is declaring a “Nothing Day” once a month. Scott Phillips explains how a perfectionist learned to accept “good enough,” while caring for his wife with brain cancer. But he also asks why medical personnel and society leave caregivers to barely manage “good enough.”

The 2018 edition chronicles cancer journeys as well. Justin Birckbichler appreciates the straight-forward demeanor of his urologist when diagnosing and immediately treating testicular cancer. Alika Leighton explains that there is no such thing as a “good cancer.” Maureen Jansen focuses on the importance of a second opinion and details her experience as a head and neck cancer patient. At age 17, Danielle Ripley-Burgess received the diagnosis of Stage III colorectal cancer. About that moment, she writes: “It would take years for me to realize I lost more than my innocence, my youth, and carefree living…– I also lost my “health privilege.”

There are also stories from people living with chronic conditions and others with rare genetic disorders. “How does one send condolences and say thank you at the same time?” asks Rosemary Huckleberry, in her story as an organ donation recipient. In 1979, Laura Kieger created a medical family tree including all the cancer diagnoses caused by a rare autosomal dominant genetic mutation that she and her family inherited. She writes,

“For all the advances in health care, genetics, and personalized medicine, the family health history may still be the most important piece of the puzzle in aiding health care practitioners to determine one’s lifetime risk of developing
cancer.”

These and other stories await the reader in this latest version of Experts by Experience. Download the eBook and learn more.