Not Sorry

As a patient with a chronic illness, I have become well-versed at shedding my humanity and emotions and leaving them outside the clinic room, like taking off my shoes when coming home. We are made to believe, through experience and myth, that doctors are only interested in data. I am so practiced in this belief – or perhaps in that fear – that I can recite my diagnostic and treatment history in full, like rattling off a monologue with the medicalized Latin words becoming normalized. 

Admittedly, I find tremendous comfort and status rooted in such words, they are my only signal to tell clinicians that I understand and that I am an “experienced patient.” I try to find innocuous ways of displaying my knowledge, like a show pony, as I ask, “Was there radiographic evidence of an obstruction?” or, “My stoma hurts when the peristalsis pulls at the healed stitches.”

This effect is only amplified by my doctoral studies: I employ the tactic of naming my graduate program to give myself that label in order to earn the respect I should innately have as a human being. The duality of being a doctoral studentand an experienced patient does not serve my sincere intentions to humanize individuals living with chronic illnesses (otherwise known as patients), but only to shove me an inch forward towards clinicians, brokering equal distance between both camps.

I was recently watching a documentary on a neurodegenerative disorder where a woman about 10 years my senior was being interviewed. At one time, she had been a dynamic gymnast who lived on her own in a big city and considered herself “another young person.” But now she was a woman in a wheelchair, with her speech laborious and slow. She began to describe how her life had changed even over one year, detailing how last year she could put on sunscreen and wash her hair, and this year she could not. Her voice paused as she struggled to say it, the verbalization working to solidify the injustice of the disease, and she quickly tried to give a half-smile and said, “I’m sorry.”

I had taken off my glasses because my eyes were filled with tears, and I wanted to yell, “Don’t be sorry!” While our diseases are distinct in their pathology and functional impact, I have also felt the ceaseless need to apologize for myself at every turn. Only yesterday did I apologize to close friends for complaining and “being lame” about my illness. I have apologized countless times in medical appointments when the emotion creeps back in, when I have stayed home sick from school, and when I have to cancel plans. Why do we feel this need to apologize? Being sick is not a robotic experience, we are people and being sick can be painful and heartbreaking and confusing and frustrating.

We have pathologized sadness, beyond clinical depression that warrants care and intervention, into the territory of rightful and expected sadness. One of my doctors regularly screens his patients for clinical depression, which is a proactive idea, although the practice in reality has turned to exploiting any expressed sadness – however understandable – into something more. There is not screening for resilience or any positive psychosocial factors; no one asks me about my kind boyfriend or my supportive mentor or my amazing parents. For me, this has created a self-protective barrier that I lift up like a shield each time, switching out emotions for a defensive strategy. This is why I apologize, to instantly strike emotion from the record, and to maintain the gleaming, polished, “educated,” and “experienced” patient persona.

I am doing it wrong. Emotion deserves – no, it needs – a place at the table. I can still be that educated and experienced patient who still has feelings, hopes, fears, and dreams. I am all of those things, as many of us are, and I am determined to not voluntarily fragment myself to fit the expected medical mold. We need our doctors to bring emotion to the room, to not ignore it, to engage in honest and safe conversations about how we feel, be it about our diseases, treatments, futures, or anything else. Choosing potentially high-risk, high-reward treatments requires an emotional investigation, a thoughtful evaluation of how it would make us feel. No one should be sorry for being emotional, especially in medical appointments when our very function, wellness, and futures are the topic of discussion.

I will not be sorry for being who I am, Crohn’s and emotions and all.