By Jenny Jones of Life’s a Polyp
Every day we touch the lives of others, whether it’s an encounter that’s so brief we barely notice it or an ongoing relationship through the years. No incident is too small. For good or bad, our interactions can be very impactful upon another. Encounters with medical professionals are no different.
As a chronic illness patient, I am always nervous about meeting with my providers—doctors, nurses, technicians—as you hold great power while I am in your care. Those of us with chronic illnesses have countless appointments and experiences that scar us or lift us up during our medical trials. We constantly wonder if our providers will treat us with care and compassion or will patronize and ridicule us for our needs and fears. Unfortunately, chronic illness patients are far too familiar with both experiences.
Poor experiences with providers multiply our already existing fears. Chronic illness patients have encountered it all. Coldness or warmth, we notice how you look at us, whisper about us, and care for us. We’re usually already on high alert, as many of us have been scarred from years of testing, procedures, and whatever else the hospital typically holds for us. I developed PTSD during my first year of hospitalizations and surgeries. My entrance into a hospital capitalizes on my PTSD. It cripples me, leaving me fearful and suspicious of medical staff until my trust is gained. I’ve been ridiculed by providers for the coping techniques I utilize during procedures. I’ve been patronized by providers for my fear and low tolerance of pain. My death-curdling cries for help have been ignored with snide remarks, my life placed on the line of an ego.
When we have a positive, helpful encounter, it lifts our spirits in the midst of some of our darkest times. During the course of a year, I had multiple stays at my local children’s hospital. Although I don’t recall many memories from this time, the ones I do recall are not pleasant. However, one memory stands out amongst all the others.
The image of one of my nurses has remained with me for 20 years. He treated me with great kindness and understanding. I felt safe in his care, particularly during a time that I was angry and mistrustful from a year of unceasing pain and medical traumas. His impact was so great upon me and our patient-provider bond so strong that my parents and I attended his wedding a year after my hospitalizations ended. His appearance and our interactions are hazy within my mind, but his influence in my physical and mental health during that period remains with me. The core of our relationship reminds me that there is a light, even if small, that will help to guide us through darkness.
Fast forward six years later to my second year of multiple hospitalizations. As a young adult, the capacity for my memory has improved since my childhood hospital years. I am reminded of four nurses and technicians who aided in my emotional coping during my physical recovery from surgeries, poor health, and countless procedures.
I underwent a full round of hyperbaric oxygen treatments and was cared for by two technicians whose humor and compassion actually let me look forward to my treatments. I was distracted from my worries, fears, and medical issues during the long treatments confined in that chamber. And when I returned from a procedure, I often would find a technician hiding out in my room during their breaks, ready for more laughter.
Although I liked most of my nurses, two stood out from the rest. One of my nurses was able to recognize me by my voice from repeated hospital admissions even before looking at his patient list for the day. His daughter would visit me to help me wash my hair. I looked forward to her visits as one of the most refreshing experiences during my prolonged hospitalizations.
Another nurse was engaged to my anesthesiologist. During my many trips downstairs from my 10th floor hospital room to the lower levels of the hospital for my procedures, my nurse and anesthesiologist would have me pass along messages to the other. These messages always provided the three of us with great laughter and smiles and were vital in distracting me from my nervousness about each procedure I was about to undergo.
In dealing with our chronic illnesses, we patients spend far too many days in the hospital; we’ve spent birthdays and holidays there. The hospital is not a fun place for us to be. We don’t want to be there. In fact, we dread the hospital, even if it’s only an outpatient visit. We try to focus on the good experiences — the times we actually are able to laugh amidst our physical and emotional pain.
Medical providers, the care you take in your medical procedures greatly affects your patients. We notice when you’re having a rough day but try to hide it from us, trying to not let it impact your job, instead finding moments to laugh with us and giving a reassuring hand squeeze or a sympathetic ear. We notice when you’re exasperated with us, ready to escape from our room and get back to your home. We realize you have a long, hard day. So do we, though. We aren’t trying to make your day harder; we just want to feel well enough to return to our homes as well.
We find worry and fear in the harsher moments. On your bad days, on those tiresome long shifts, remember we bond with many of you, finding shared interests or strength in your compassion. We’re looking to you for help to get through our stay. Your care makes a difference in our lives—now and in the future.
This post was originally featured on Life’s a Polyp.
About Jenny Jones
Jenny was diagnosed with Familial Adenomatous Polyposis at age 8 and after 6 years with an ileostomy now has a Straight Pull Thru. She has a Masters degree in Social Work and shares on her personal blog Life’s a Polyp.