3 Terms That Have Helped Me Understand the Well Sibling Experience

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by Kate Delany |

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Studies about healthy people with chronically ill siblings are rare. Almost every study examining the psychological impact of illness on the well siblings begins, “This is an underexplored demographic.”

This doesn’t surprise me. I’ve been a well sibling since age 3, as my younger sister has cystic fibrosis, but I never heard that term until I began working to better understand myself. I’m also new to the various terms I’ve encountered in the scant research on us. 

Learning about these terms has been like holding up a mirror to much of my lived experience. I want to share these concepts with fellow well siblings because self-knowledge can be powerful. Having words to describe your thoughts and habits is the first step in making positive changes. This knowledge can also be helpful for parents who want to address the impact CF has had on all of their children.

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1. Parentification

Researchers have noted that parentification is common among well siblings. Parentification, which occurs when children take on adult roles or responsibilities, can take two main forms, The Awareness Centre website notes.

If parents are going through a messy divorce or struggling with addiction, a child may experience instrumental parentification, in which they make dinner, take care of siblings, or perform similar household duties. Emotional parentification occurs when children are expected to tend to the emotional needs of siblings, parents, or other adults, often as confidantes or mediators. 

Of the two, emotional parentification is thought to be more damaging. In her 2015 dissertation accepted by the Graduate Faculty in Psychology at City University of New York, Danielle Benveniste Stevens noted that parentified well siblings often become so attuned to their parents’ emotional states that it supersedes a real awareness of their own. Parentification affects a child’s ability to make healthy, independent decisions by estranging them from their own needs.

In an article published in the International Journal of Qualitative Studies on Health and Well-being, sociologist Ulrika Hallberg examined well siblings by gender, age, and birth order. She found that older sisters of people with chronic illness are most likely to carry the burden of the family’s pain. They are also most likely to be parentified and take on permanent parentified roles in sibling care.

All of this squares with my own experience. From a young age, my older sister, also a well sibling, and I were tasked with consoling adults, especially during times of CF stress. We continue to face steep, implicit expectations in terms of both caregiving and emotional labor. After a lifetime of parentification, it is difficult to reset those boundaries.

I am, however, vigilant about not letting my children become parentified. While I want them to learn kindness and empathy via their connection to CF, I do not want them to take on adult emotional roles in my family.

2. Internalization

Research has also shown that well siblings often display internalizing behaviors, in which they feel the need to turn their troubles inward. Well siblings may bottle up fear, guilt, or frustration to avoid upsetting emotionally drained or unavailable parents. Studies have shown that girls are more likely to internalize problems. If unaddressed, internalizing can lead to anxiety, depression, and poor self-esteem.

Again, this term has equipped me with additional understanding of my behaviors over the years. Like many well siblings, I have felt unable to discuss CF-related fears or frustrations, except with my older sister.

As a child, I would lie in my younger sister’s empty bed while she was hospitalized and cry, rather than bother an adult. I got my first period when my sister was hospitalized. Though I was scared and confused, I didn’t tell anyone, and later staged a first period for my mother.

While I don’t believe internalizing is healthy, it did eventually lead me to writing. When a creative teacher asked my grad school class, “What hurt you into poetry?” I knew my answer right away.

3. Avoidance coping

Avoidance coping is the unhealthy opposite of approach coping, and a frequent well sibling strategy. The avoidance can be physical, like an attempt to distance oneself, or it may look like compartmentalization. Substance abuse is another way people may try to avoid stressors.

In my family, avoidance coping has often meant confining discussions about CF to highly specific medical terms. Scans, X-rays, test results, and doctor visits can all be discussed in great detail. It’s an orderly way to talk about CF without getting into the messiness of feelings. We describe the contours of the elephant in the room without actually naming it. I’ve heard myself rattle off scientific answers when friends ask how my sister is doing. It’s a way to respond without facing CF head-on. 

The lives of well siblings are both complex and underexamined. Though middle-aged, I am only now understanding how I’ve been emotionally affected. Having terms as guideposts has helped me. Hopefully, other well siblings will find them helpful, too. With vocabulary comes knowledge!

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Note: Cystic Fibrosis 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 provider 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 Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

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