Why I Prefer to Say My Daughter Was 'Medically Complex' Rather Than 'Medically Fragile'
When people refer to very medically involved individuals, there are two terms that seem to be used often: “medically complex” and “medically fragile.” Neither is really offensive, and there is no right or wrong term. Recently, I was explaining some of the vision behind Casey’s Circle and used the term “medically complex” frequently when referring to the population we serve. I was asked why I prefer to say “complex” versus “fragile.”
Good question! Casey was absolutely fragile when it came to her medical condition. Someone could be in the same house (never even coming in contact with Casey) and she could catch the slightest cold or flu that would often lead to in-depth medical attention. However, I never liked to think of her as fragile.
In as many ways as she was medically fragile, she was also invincible. She overcame more in her life than many of us will ever face. She was stronger than anyone I have ever known. When it came to her perseverance and determination, she was not fragile at all. In this sense, to me she was more like a superhero than fragile. I feel as if “medically fragile” can take away from how strong she was, and how strong others with these types of diagnoses really are.
If someone else were to refer to Casey as “medically fragile,” I would not take offense to the term. Nor would I correct them. I personally choose to use “medically complex.” Casey was complex in many ways —medical is just one. At the end of the day, something like medical terminology is up to the parents’ or child’s preference. If you prefer to think of your child as “medically fragile,” that’s also perfectly fine. Like they say,”to-may-to, to-mah-to.”
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Marty Barnes is a native Texan and best known as Casey’s mom. While living in California for work, Marty and Tim Barnes welcomed their only child, daughter Casey, in 2006. Due to Casey’s very complex medical needs, Marty quit working in the IT field to be a full time mom and caregiver. The Barnes’ returned to Texas in 2008. Marty and Tim created the nonprofit Casey’s Circle after Casey’s passing in 2016. This organization offers many tools, resources, social opportunities for medically complex children, and bereavement events. Casey’s Circle also includes educational resources specifically designed for caregivers of medically complex children. In addition to her own organization, Marty is very active in the special needs community, volunteering with organizations such as Texas Parent to Parent, Mommies of Miracles and Hand to Hold. Marty writes articles for special needs publications, including The Mighty, Complex Child, and many others. Marty works closely with Austin’s children hospital and the Palliative Care Team to help improve family centered care and best practices for children with complex medical needs. In her spare time Marty enjoys movies and swimming. She never passes up a chance to share Casey’s story or to meet another parent of a medically complex child. Being able to connect and help other families through Casey’s story has become Marty’s mission and passion. Casey’s Circle Casey Barnes- blog & personal site
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