What’s in a Name?
You've heard the popular phrase "Sticks and stones may break my bones but words will never hurt me." But name-calling hurts because it is an unfair attempt to falsely define an individual. It slowly chips away at self-esteem and over time and alters the perception of self.
The longest relationships I've had are with sickle cell and pain. Each has tested me in countless ways and consumed every facet of my life. As a result, I have always been at crossroads; adamantly trying to break free, but the hold was far too strong. Living with a chronic illness can be a heavy cross to bear because you're unfairly labeled. Some names are condescending and slightly degrading. Let's break down these labels.
She's a VICTIM...
According to the Merriam-Webster dictionary, there are two definitions for the word "victim": Someone who is injured, destroyed or sacrificed under various conditions; One that is subject to oppression, hardship, or mistreatment. Each definition aptly applies to patients with chronic illnesses like sickle cell. Our disease injures us and subjects us to mistreatment by biased healthcare systems where the patient's voice doesn't hold much power.
My parents, however, did a phenomenal job raising me despite the odds stacked against us. They took an unconventional approach by withholding my sickle diagnosis until I was 10 years old. As a child, I had no inkling that I was born different or lived with a chronic disease. My mother had a remarkably convincing story for every hospital admission. Because of this, I believed her every word like it was the gospel.
You see, parents are not the only ones who have to adjust to their child's illness or disability. Life seemingly changes for the whole family. Many parents give extra attention to the child with a chronic illness or disability, so siblings can often feel neglected. To combat this, my mom treated my brother and me exactly the same – with chores, school work, and extra-curricular activities.
This approach had two benefits: I never saw myself as a victim. So, the victim mentality wasn't part of my identity or learned behavior. Also, society didn't treat me as a victim so there was little room for the unwarranted but anticipated stigmatization. Teaching children to see beyond their disabilities is a sacred gift of hope. I wish more parents adopted that mindset.
Rejecting the victim mentality
Years ago, I read a powerful quote by Steve Maraboli that I hope resonates with chronically ill patients: "No matter what you have been through, you're still here. You may have been challenged, hurt, betrayed, beaten, and discouraged, but nothing has defeated you. You are still here! You have been delayed but not denied. You are not a victim, you are a victor with a history of victory!"
To survive sickle cell disease, I've learned how to be defiant of society's critical assessment of who/what I should be deep down. I know who I am. If you can send back the wrong food order, then you can gracefully tell the world that you are not a victim of your disease.
She's a SICKLER...
The first time I heard the word "sickler", I was 7 years old. A boy in my class had upset a popular student. During our snack break a group of other popular kids bullied and belittled the boy, repeatedly calling him a "sickler", among other insults. At the time, I had no idea what the word meant. But by the tears streaming down his face, I saw how the name-calling completely broke his spirit.
According to the National Library of Medicine, the term “sickler” is used by medical practitioners to refer to children and adults with sickle cell disease. However, many patients in the global sickle cell community find the word extremely offensive because the label reduces us to nothing more than our disease.1
Why not to use the word "sickler"
In West Africa, the term is thrown around casually. This significantly impacts the patient's self-esteem, affects their identity, and damages their emotional well-being. What many people fail to realize is that the use of the term “sickler” may not be innocuous. Research findings suggest that practitioners who use the term do harbor negative attitudes toward patients with sickle cell disease (SCD).
In a survey of emergency physicians, providers who use the term “sickler” were less likely to adhere to practice guidelines when managing acute SCD pain in the ER. One medical practitioner felt strongly that physicians who use the term were not seeing patients as people. As a result, they inevitably delivered low-quality care. Others felt that the term was used out of ignorance (without malice). For that reason, its use had no direct association with implicit bias, negative attitudes, or the pain management protocol administered.1
That's not my name!
As I read through the research findings, it shed light on common physician behaviors that may be problematic. It also lent support to the widespread patient perspective that the term “sickler” is disparaging. Health-related stigmas are a form of devaluation, judgment, and social disqualification of an individual based purely on a chronic condition.
In 2010, the stigmatization of young adults with SCD become a public health issue because of the added burden on individuals and families impacted by the disease. Personally, the term has prompted a lot of internal criticism and was a source of anger for most of my teenage/early adult years.
Share your thoughts - how do you feel about the terms 'victim' and 'sickler'?
Have you had a special caregiver in your life?