I’m Losing Patience with Being a Patient

I’m Losing Patience with Being a Patient
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Last week, I discussed my current health battle with elevated liver enzymes. I continue to get weekly bloodwork so that my transplant team can monitor my situation remotely. After a two-week delay, I’ll finally meet with my doctor this afternoon to discuss tests and lab results from three weeks ago. In the meantime, I’ve been in a holding pattern, waiting for answers.

As a woman of faith, I fostered patience at a time when I was causing myself nothing but grief from trying to control my life situation. I finally learned to “let go and let God.” The lesson of trusting something larger than myself helped me handle my autoimmune diseases until my doctors found a suitable medical regimen.

After years of remission from Crohn’s and restored health after my liver transplant, I’m being sucked back into the dark hole of wondering what is going on inside my body. This period of waiting for my medical team to shine light on my deteriorating condition has caused me to question why the sick are called “patients.”

A rose is a rose is a rose

Those of us with chronic illness and autoimmune diseases constantly struggle with patience. At appointments, we bide our time in literal waiting rooms and exam rooms to see our care teams. When we have tests and lab work performed, we wait by our phones or check our emails for results. We anticipate if and how medications will work. We hope for a cure within our lifetime.

The adage “patience is a virtue” implies that being patient is admirable. It comes across as a trait everyone should attain. However, “patience” and “patient” are derived from the Latin word pati, which means to suffer.

The etymology made sense. I often write about suffering from Crohn’s. But the more I thought about the meaning, I began to resent being called a patient in the medical sense.

When a patient isn’t patient

Suffering suggests a passive state imposed on an individual beyond his or her control. I consider suffering more of a mindset. While I don’t deny the pain involved with Crohn’s, I choose not to focus on it. Rather than passively suffering during my periods of waiting, I take a more active role, which can hardly be described as being patient.

As I brainstormed about this column, I found an article in The BMJ about whether the term “patient” had become obsolete. A former chair of a British patient advocacy organization took a stance similar to mine. She maintained that the passivity of a sick individual could be dangerous. If a provider made all the decisions about medical treatment without input from the individual, the patient placed his or her life in someone else’s hands.

A clinician and a professor offered counterpoints to her argument. Although both men agreed that the word “patient” carried a tone of submissiveness and compliance, they argued to keep the term. They approached the patient-provider relationship from a business perspective. The clinician viewed the relationship as a service, offering euphemisms like “user” or “client.” The professor compared it to a capitalistic, yet compassionate, transaction, using terms like “customer” and “consumer.”

The power of a word

So, what am I doing if not suffering from my illness?

In the doctor’s office, I engage my mind productively by reading, working, or solving a crossword puzzle. By keeping busy, I don’t become annoyed by the wait.

When waiting for lab results, I research the purpose of the tests or the symptoms that caused my doctor to order them. Sometimes, this might lead me to self-diagnose incorrectly. More often than not though, seeking answers prepares me to ask better questions when I meet with my healthcare providers. Being proactive allows me to participate in and propose options for my care.

Once I’ve started treatment — whether it involves taking a new medication or making a lifestyle change — I monitor any changes or reactions. My medical team can’t observe me 24/7, so I take responsibility for noting any physical, mental, or emotional effects, both positive and negative. Sharing this information with my doctors helps them make better decisions about my care.

As an advertising copywriter, I understand the psychological impact of words and labels. Autoimmune disease and chronic illness communities need a new moniker to better represent the active role we play in our healthcare.

We already are survivors, warriors, and fighters. Perhaps, instead of “patient,” we can be called “resilient” for all that we’ve overcome. Taking a straightforward approach, we could refer to ourselves as a health receiver, recipient, or participant. Or, we could invent a trendy term like “healther” and define what we want it to represent.

I would love to hear other ideas. Together, we can stop being suffering patients.

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Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.

Emmeline is a 47-year-old Crohn’s warrior and primary sclerosing cholangitis survivor. Her column encourages patients and caregivers to advocate for better healthcare and educates readers about her rare autoimmune diseases. She also freelances as a communication specialist, offering writing, editing, and graphic design services. Emmeline (an Auburn fan) and her husband Patrick (an Alabama fan) enjoy watching SEC football and spending time with loved ones in Austin, Texas. Thanks to a liver transplant in 2017, Emmeline is training for her third-degree black belt in the Korean martial art Mu Sool Won.
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Emmeline is a 47-year-old Crohn’s warrior and primary sclerosing cholangitis survivor. Her column encourages patients and caregivers to advocate for better healthcare and educates readers about her rare autoimmune diseases. She also freelances as a communication specialist, offering writing, editing, and graphic design services. Emmeline (an Auburn fan) and her husband Patrick (an Alabama fan) enjoy watching SEC football and spending time with loved ones in Austin, Texas. Thanks to a liver transplant in 2017, Emmeline is training for her third-degree black belt in the Korean martial art Mu Sool Won.

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