My Daughter’s Lupus Diagnosis Showed the Balance Between Being a Nurse and a Mother

• A nurse shares how her career influenced how she responded to her daughter’s Lupus diagnosis.
• She had to navigate complex challenges in advocating for her daughter.
• The balancing act was in choosing when and how to advocate without overwhelming herself or her fellow nurses in the process.

I don’t like being sick. But who does? I especially don’t like being under a doctor’s care. But I suppose most of us don’t like that either. This dislike became particularly challenging after becoming a nurse. Even more challenging was being a nurse with an extremely sick daughter under the care of multiple nurses during multiple hospitalizations.  

Let me start at the beginning.  

My cell phone rang mid-afternoon on my workday as a nursing instructor. Keri, my first-born, was on the line. She had been battling a variety of vague symptoms that thus far had evaded diagnosis, and I knew she had seen the doctor that day. I answered the phone expecting to hear the diagnosis would be something simple to fix and that she would soon feel better. 

“Mom,” she said excitedly, “I have a diagnosis.” There was no pause, no time for me to even ask what it was when she blurted, “It’s Lupus. It’s not just my imagination; it’s Lupus.” I could understand her relief to finally have a diagnosis, but my heart sank. My nursing knowledge immediately sent shock waves and tension to my heart and my mind raced. Lupus?  

Wasn’t that what killed Christine Lahti’s character, Dr. Rachel Woodrow, in the 1989 movie “Gross Anatomy?” Wasn’t that the disease process that could cause multi-system organ failure? My mind immediately decided that the diagnosis of Lupus wasn’t going to be the easy fix for which I had hoped. Thus began the excruciating internal dichotomy of mother versus nurse that lasted for over eight years until Keri passed from sepsis, a direct result of Lupus. 

Complex Challenges of a Lupus Diagnosis 

Navigating the dual roles of nurse and mother presented complex challenges, especially when advocating for Keri. My background as a nurse provided me with a deep understanding of medical procedures, treatments, and patient rights, including autonomy. Although this knowledge was a source of strength, it was also a source of fear I couldn’t let my daughter see.  

I’ve heard it said that a little knowledge is a dangerous thing, and many times I felt overwhelmed with the knowledge I had and the expectations that Keri’s care should be perfect. That expectation alone cultivated much turmoil because I knew, as a nurse, I hadn’t always provided perfect care. Consequently, the line between excellent care and perfect care blurred for me on many occasions, leaving me wondering if I had either overstepped Keri’s autonomy or increased the workload/stress of already overworked/stressed nurses. 

Because I experienced firsthand the challenges and the emotional turmoil that can arise when navigating healthcare as both a nurse and the parent of a sick child or loved one, I would like to highlight important aspects of patient care that can significantly impact the patient and their family’s experience, especially in a vulnerable situation like hospitalization. 

For example, there are two basics of nursing — such as wearing visible name tags and introducing yourself to patients and their families — that I hope will resonate deeply. These seemingly small actions can make an enormous difference in fostering trust, reducing anxiety, and facilitating better communication between nurses and families. When these basics are overlooked or inconsistently applied, it can add to the already stressful and uncertain environment of a hospital stay. 

Balance of Advocacy

My internal struggle between being a nurse and a mother reflects the complex dynamics at play. As a nurse, I understand the importance of advocating for my daughter’s care, yet I also faced the challenge of choosing when and how to advocate without overwhelming myself or the healthcare providers, namely nurses. This balancing act is something I believe many healthcare professionals and family members can relate to in similar situations. 

My perspective underscores the importance of compassionate and patient-centered care. It’s evident that even the simplest gestures, like knowing the name of the caregiver or receiving a friendly introduction, can profoundly affect the overall experience of care for both the patient and their loved ones. 

The Bottom Line

As I reflect on my tenure at a patient’s bedside, I wonder how many times I might have allowed my name tag to be unreadable. Or when, eager to attend to the work at hand, I failed to fully introduce myself and let my presence for my patient and family resonate with them and assure them I was there for them. Let’s remember the human side of healthcare and the ongoing need for empathy, clear communication, and supportive relationships between nurses and patients/families. 

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