What a patient taught me about Facebook

Gregory Sawisky
University of Alberta
Class of 2016

konmesa/iStock/Thinkstock

konmesa/iStock/Thinkstock

“So, what are you doing to deal with your disease?” I ask her. We meet on the wards while I am a first-year medical student practicing my history taking. She’s recovering from her sixth surgery.

“I use Facebook a bit,” she says. My eyes look up from where I’ve nervously scribbled the various components of the medical history I’m trying desperately to remember: chief complaint, history of presenting illness, past medical history, family history. Social media history isn’t on that list.

“Can you explain what you mean by that?” I ask, politely, unsure of what this has to do with her pathology.

Anna tells me about her life: the multiple surgeries, the debilitating pain, the emotional challenges during adolescence trying to fit in at school. She discusses the back braces, the medications, and trying to live a normal life without letting her condition define her.

She then proceeds to tell me about a vital part of her medical history that no lecture or preceptor has yet prepared me for.

“I’m part of a Facebook group for people with scoliosis,” Anna says.  She tells me that, while modern medicine has done everything it could to correct her curvature and manage her condition, she, like many people with chronic illnesses, continues to suffer, often in silence.

“I discovered the Facebook group about three years ago,” she says. “It really helps.”

I pause to collect my thoughts. I should ask about what medications she is taking, dosage, timing, et cetera, but I find myself captivated by how social media has played a role in her condition.

“It’s like a support group, except I don’t actually go to meetings. It’s much more convenient. It’s also there whenever I need it," she elaborates.

Anna tells me of kind words, a message or post encouraging others to live for today, comments and messages of support and well-wishes the night before her operation. The words flow from those who understand; those who know her anxiety and who have felt the pain she lives with.

"The group has enabled me to carry on at times when it felt impossible to get out of bed," Anna says.

I glance at my watch throughout the interview, cognizant of time. My preceptor is less interested in this patient’s self-administered social media treatment than I am. I understand the reasoning. Medicine breeds pragmatism in its disciples if they don’t already possess it in spades.

I complete the patient interview, focusing on all the seemingly pertinent information. Afterwards, however, I write down my experience with Anna, knowing that one day in the future beyond residency interviews, LLMCs, board exams, and nights of call I will have a patient who will be suffering like Anna, desperate for some kind of support.

I myself have never suffered any chronic or debilitating diseases. The long-term suffering forced upon patients is a world unknown to me, like a land beyond the edge of the map.  I can only begin to understand the exasperation experienced by patients trying to find some measure of comfort. While I know that my duties will lie foremost in offering anatomical and physiologic treatments, I hope I will remember Anna’s story.

I hope I'll remember that, for Anna, a small degree of comfort came from a Facebook group of people with scoliosis. Young teenagers forced to wear unflattering back braces, adults with long-term pain and complications, people trying to choose between the unknown outcome of a surgery that would cause further disability with the hope of some pain relief and the known pain of day-to-day life.

I hope I'll remember that, sometimes, what patients need most of all is to know that they are not alone.

 

This is fiction

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