My training was not enough to understand human experiences.
My first personal interaction with cancer was through the lens of a microscope. I observed the abnormalities in the structure of the cells and nuclei of the tissue slide and recalled what I had learned in my pathology class. I emphatically concluded that it was specimen of invasive ductal carcinoma of the breast.
I felt proud of myself at that moment; I thought that I had actually understood something about cancer. However, my experiences in the clinic made me realized how little I really knew about cancer.
My journey from med school to working in health technology
During my clinical rotations, I saw individuals being diagnosed and treated for cancer, and the impact that cancer has on the lives of patients, their caregivers and families. My professional background includes clinical training in primary care medicine from India; for which I hold an active license in Maharashtra, India.
I earned my master’s in health communication from Penn State University, and a PhD in social and behavioural health from Virginia Commonwealth University School of Medicine. My area of study has been understanding ways to improve the psychological, emotional and physical wellbeing of cancer patients and survivors through modalities other than medications. I have published scientific papers, but in this blog post, I want to share with everyone what I have learned from both a personal and professional lens.
A friend’s suffering and a call to action
My first experience with the C word, happened when my friend and senior in medical school was diagnosed with a rare soft tissue tumor, Askin’s tumor. Seeing him go through chemo and radiation was difficult, but it was bearable in the hope that it would be cured.
His cancer did go into remission, but only to come back in a few months with a fatal force. Being with his family after he departed was painful and humbling, and really confusing. I thought medical science had all the answers; but this was clearly not the case. His journey gave me a call to action to initiate my journey, in which I wanted to first start with listening.
Understanding human experiences with illness through patient stories and journals
Throughout the rich history of our human condition, the art of storytelling has been a central activity that has helped define our individual and collective identity. In fact, social scientists have gone as far as calling us Homo Narrans, the storytelling man. This narrative trait is particularly invoked when diagnosed with a new medical condition or living with chronic or complex medical condition. Similarly, family members and caregivers of those affected can experience this as well.
An illness inadvertently causes life disruption which forces those of us affected, to reevaluate the grounds on which we planned and assessed our lives. The story of our life must now change and accommodate this life disruption due to illness, and this can be an enormously stressful process.
“Cancer turns your life into a roller coaster ride. Sometimes it is calm and you just roll along and other times its just up and down. Sometimes when your waiting on test results from your really follow ups, your life gets bumpy (ride up and down) until you get the results”
- (P-5, Patient quote from my master’s thesis project Cite Thesis PSU).
In my master’s and doctoral research with individuals diagnosed with cancer, I discovered human extraordinary experiences described in their stories. More recently, I have been intrigued by the art and science of digital storytelling from patients and caregivers - it allows everyday people to share their stories in an engaging video and audio format.
Benefits of keeping a journal when faced with an illness
Considerable scientific and experiential evidence has accumulated showing that keeping a journal for a health condition can have benefits for patients and caregivers. There are several reasons that patients and caregivers keep a journal or bullet journal, ranging from keeping notes of their conversations with health providers, to tracking their health data. My enthusiasm to be part of Zamplo, comes from seeing the possibility that this platform can provide a comprehensive digital journal for patients and caregivers.
The journal with notes and questions for consultation visits
One of the common reasons patients and caregivers keep a journal, is to keep note of what their health providers have discussed during consultations. This journal can also include a list of questions you may have that you like to bring up in your next visit to any health provider. This can help to keep a record of all your conversations with health providers - we can all agree that memory is not our best friend during a time of health crisis.
The journal for writing your thoughts, feelings and experiences
The expression of emotional and stressful experiences through writing has been shown to have a wide range of health benefits for individuals. These benefits include reduced stress which helps with mood and psychological wellbeing. This has shown to translate into improved physical health and immune response by decreasing stress hormones, as science discovers more about the interconnected nature of our mental and physical systems.
This journal about your thoughts and feeling could be a daily diary to recount the important experiences of the day. This journal could also be a place where you can write your deepest thoughts and feeling about your illness. This type of journaling helps you release some of the bottled-up emotions, and after a while helps see the bigger picture in relation to these stressful experiences. This journal has been incorporated in Zamplo journals, quick notes features.
The journal for tracking your meds, activities, health data and symptoms
When faced with a chronic or complex condition, an important way of keeping track of your health routines is writing it in a journal. Whether it is the quantity of a certain medication or supplement you are taking, or the various activities you are doing for your health are important records for yourself and your health providers. Furthermore, this journal can help you keep track of your symptoms in terms of their timing and severity.
If you have a chronic condition that requires regular self-monitoring like diabetes or hypertension, you can keep track of your blood sugar or blood pressure in this journal. Zamplo has a routine feature that allows you to track your health information including meds/supplements, activities, health data and symptoms. This type of journal is powerful when shared with your health provider, who can make better decisions about your care when presented with the data in this journal.
Your lived experiences matter!
In conclusion, the most important take away from my research and studies is that expertise is what emerges as a consequence of experience, not just knowledge. You are the expert of your own life experiences, in the context of health and all aspect of life.
I want to acknowledge each one of us that has faced a health adversity, for who we are, and for the ocean of possibilities that lie within us. Taking charge of a situation or medical condition involves a process of baby steps, and journaling could be one of them.
Thank you for reading.
Please feel free to leave a comment below or send me an email at firstname.lastname@example.org