I crawled into my closet and pulled out a dusty, battered Ultimate X-Men: Vol. 1. Sunray slivers peeked through the slightly-ajar door, lighting sections of the comic book as I read beneath my jackets on their hangers. I was in 10th grade and had just lost the hearing in my right ear due to IV amikacin usage.
Ultimate X-Men was a comic I continually turned to for comfort, a tale of outcasts finding community. They could choose to be heroes or live discreetly, but they were part of the mutant community nonetheless. Cystic fibrosis made me feel like I didn’t belong in normal society and my new deafness only strengthened that belief.
It’s a running joke to say people with CF are X-Men because the disease is caused by mutations (we are technically mutants). But I’ve found we identify with the X-Men in more ways than just our genetic makeup. The mutants have unorthodox bodily features that often make them feel gross: Morphed skin colors and textures, hair in inconvenient areas, sticky or toxic slime. They find they’re best understood by fellow mutants and suffer from mental health issues because of their genetic misfortune. They even fight a villain named Snot, whose power is weaponized mucus.
The X-Men family is similar to the CF community. Us “cysters” and “fibros” are connected by a collective suffering and feel misunderstood by the “normal” world. Where the X-Men were constantly accused of being villains, us CFers are often labeled as “heroes” by people who barely know anything about our stories, much less our mentality.
I try to tell people I’m “just surviving,” that heroism is a choice, whereas CF is a forced burden. They usually respond that being an inspiration is an act of heroism. I understand they’re trying to be kind. But it stacks expectations — a need to always put on a happy mask for others when experiencing suffering, because expressing grief often isn’t seen as “inspiring” by society.
It’s similar to saying people “lost their battle” if they die of cancer — terminology can undermine realities. Unlike Wolverine, we don’t always get back up. A person can be a mass of muscle and determination, and still be killed by CF. It was gut-wrenching when I saw my lung function declining despite my best efforts and felt I failed my supporters by “losing the battle.” Even worse, was feeling the need to act as if that decline didn’t emotionally hurt me because I felt the need to pass off as heroic. And I definitely didn’t feel like a hero when I constantly lashed out at my family in frustration during my sickest days.
I’m not saying there aren’t CF heroes. There are patients who start foundations and awareness campaigns, who pursue medical degrees to study CF and discover a cure for cysters and fibros, and more. Cody Sheehan is an Australian CF patient with a lung and liver transplant who embraces the “hero” reputation. He dresses up as Captain America — a superhero who was once scrawny and sickly, like a stereotypical CF patient — to raise awareness of his disease and organ donation. Yes, many are heroes to others because they are inspirational in how they handle CF.
However, some people with CF don’t want to be heroes. Some feel they’ve sacrificed enough for the disease and would rather make the rest of their life as normal as possible, or extraordinary in ways not dependent on them being diseased. That’s absolutely fine.
It’s true that heroes come in all shapes and sizes — and health conditions. But when facing a disease of immense mental struggle, language matters. Language that set high expectations for character in the face of an uncontrollable, spontaneous disease forced me to mask suffering unhealthily. At times, being called “hero” for the mere fact that I had a disease made me feel as if I was defined by the illness. I craved normalcy, and the idea that CF defined me did damage to that.
Efforts to make me feel better about my struggles were appreciated, but keep in mind there often are nagging voices in people’s heads that overthink words. Rather than using terms like “hero” in relation to involuntary medical conditions, try complimenting specific things:
- “The jokes you told about your surgery were hilarious.”
- “I love your new blog post. It really makes your disease more understandable for me.”
- “Thanks for sharing your feelings. I’d imagine that’s difficult, but what you said really helps me to realize more of your struggles.”.
Calling a patient a hero does have the ability to motivate some people. This column doesn’t reflect the views of all CF patients, but it’s safer to get to know the person’s psyche before using such words, rather than assume.
Just as X-Men often had the choice to be heroic or discreet, people with chronic illness should be allowed the choice of being called a hero or not.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.