I lost a Breast due to a bad Patient Experience
A simple question of “when was your last Menstrual Cycle ” led to a Mastectomy. Simple as that…wait a minute. Is it that simple a story?
I am Ahimaa, (pronounced a:hi:maa). A 48-year-old female breast cancer survivor with one breast due to bad patient experience. Here is my story….
I have MRKH syndrome, meaning I was born without a uterus. I was diagnosed at age 17 when my parents realized I was not just a late bloomer but rather had a medical condition. A condition I have struggled with psychologically since diagnosis.
In my early adulthood, I developed the initial stages of Nosocomephobia; the fear of hospitals. Responding to the question “when was your last Menstrual Cycle?” (a very common experience for most adult females in some hospitals/clinics in Ghana), was always such an ordeal, it meant narrating my story of how I do not menstruate because I have no uterus.
My anxiety emanates from patient experience challenges of narrating the story to triage (OPD) nurses and to the inadvertent hearing of waiting patients. This ensues in nonverbal responses of Pity, Sympathy, Surprise, Concern……, not an iota of empathy from the nurses regarding how sensitive this question is.
The day the Nosocomephobia took a turn, was one fine day in October, Breast Cancer Awareness Month. Breast Cancer Awareness Campaigns were ubiquitous with various shades of pink. I decided to undergo a breast examination as a precautionary measure, as the narrative goes “early detection can save a life “, so there I was taking steps to save my life.
The venue for the breast examination was a conference room, the actual examination area was part of the conference room, partitioned by the green hospital curtain divider (reminiscent of childhood injection days) for patient privacy. However, it was merely a sense of privacy as conversations behind the curtain were audible enough to patients waiting.
Here I was lying on the examination bed when the dreaded question pops up “when was your last Menstrual Cycle?”. I hesitated, took in a deep breath, and mumbled my response, indeed it was inaudible, so had to repeat my response in a low tone, to which the healthcare provider responded: “oh you don’t have a womb!” to the hearing of anyone keen on listening in.
After my examination, I was awash with stares from waiting patients, stares so intense, that it felt like they were boring into my abdomen to confirm if indeed I had no uterus.
I vowed never to subject myself to such humiliation again.
That is how I developed Nosocomephobia, which led to the late detection of breast cancer and consequently the much-dreaded mastectomy.
I was lucky. Though I lost a breast, I have my life. Others may not. Great #patientexperience should be integral to the whole #patientjourney.
REFLECTIONS – Customer Experience Management (CXM) as a Business Transformation Tool
- Create value from customer insights; trends resulting from feedback are great, however individual stories such as Ahimaa’s are necessary for transforming customers’ experiences (in this case patients’ experiences).
- Process design should be intentional with value creation for both customer and business in mind.
- Privacy and confidentiality are essential to a great patient experience, these are non-negotiable.
- Empathy makes the world a better place.
What CXM gaps did you identify?…. LET’S DIALOGUE CX
#CXdialogue
©AhimaatheCXstoryteller, 2022
