What Does Being a Hero Mean to Someone with Cystic Fibrosis?
People living with a chronic disease are often called heroes. Others like to point out how brave they are because they’ve endured so much. But sometimes, being a hero isn't what they want to hear. One cystic fibrosis shares his perspective on how being called a hero makes him feel.
Brad is an X-men fan but says that sometimes he rejects when people call him a hero
Brad has been a cystic fibrosis patient all his life. As an avid X-men fan, you would expect that being looked up to might make him feel good. He still remembers reading through the Ultimate X-men: Vol 1 while he was in the 10th grade. It was a battered copy stowed away beneath his jackets in his closet, but he loved it nonetheless. It often gave him comfort, especially that time he lost the hearing in his right ear. The hearing loss was due to an unfortunate side effect of amikacin, which he needed due to an infection associated with his cystic fibrosis. Though he loves to read about his heroes, he shares with us the real story - sometimes, cystic fibrosis patients don't want to be the hero themselves.
Being an X-man isn't that far off from having cystic fibrosis
It's a common joke for people to say that cystic fibrosis patients are similar to X-men. It might be a way for people to lighten the mood when they are faced with something that makes them uncomfortable. The link here is that both X-men and cystic fibrosis are caused by mutations in our genes. However, X-men are glorified in the media and we look at them admiringly because they have superpowers that help defeat evil.
Brad has been an avid X-men fan for many years. He actually feels akin to X-men because their mutations give them more than just superpowers. Similar to cystic fibrosis, the X-men deal with undesired body features due to their mutations too. For example, some X-men have morphed skin colors and textures, others have hair in inconvenient places, and some produce a sticky slime. X-men are grossed out by their own bodies too, and they find that they are best understood by others who share the genetic misfortune.
Cystic fibrosis patients can feel connected to each other
Similar to the X-men family, cystic fibrosis patients can find mutual support from each other in the cystic fibrosis community. Referring to him and his fellow cystic fibrosis patients as "cysters" and ‘fibros", Brad feels he is connected to a collective suffering that is often misunderstood by the rest of society. Just like X-men, Brad noticed that people sometimes labeled cystic fibrosis patients as heroes, especially by people know barely understood anything about their real experience or mentality living with the disease. Brad often felt comfort reading his X-men comics because his heroes often felt like they didn't belong in normal society either.
Read on to learn more about heroism and chronic illness.