Beginning in high school, when the severity of my disease clashed terribly with my immaturity, I felt entitled to anger. I wanted to focus on how unfair my disease was, and the well-intentioned attempts by others to lighten my mood or find common ground mostly served to fuel that anger: “Oh, I have asthma so I know what it’s like!” “You’re lucky you get to eat anything you want without gaining weight.” “You’re lucky you get to skip school so much.” “I had a relative who had CF. They died.” I also grappled with my desire to be treated “normal,” while simultaneously bemoaning that I had to keep pace with everyone else in school during my battles with this disease. This anger and self-pity resulted in me viewing people’s personal problems as trivial in comparison to mine, and I often lashed out at others, especially my family. My anger ruined relationships, my self-esteem, and my overall attitude towards life and others.
This pattern of destruction still lingers, but I think I’ve generally improved my attitude. I’ve come to realize that I’d been expecting people to actually know what I go through, and that I thought people’s words were deliberately offensive when they were really more often just built on misunderstanding. Cystic fibrosis doesn’t get much attention outside of maybe a couple biology class lessons about genetics. And unless a person with CF is very open about their life, many of their friends think life with cystic fibrosis is nothing more than the difficulty to breathe, lots of pills, and the occasional hospitalization. As I’ve mentioned in previous posts, a lot of cystic fibrosis aspects are viewed as too embarrassing to be public about. To those who aren’t close to someone with the disease, “cystic fibrosis” is often nothing more than a couple unintelligible words.
Honestly, a huge factor in me opening up about my disease post-high school was the need to let people know I needed help, especially when I was living on my own in college. When merely talking or walking exhausts me, it becomes a bit difficult to hide how big of a role the disease plays in my life. So I had to wrestle back my pride over normality to allow people to help me out (even more so recently when I became deaf and oxygen-dependent). Since the time I became more open about things, I haven’t had as many people say the things from my first paragraph. People now seem to understand the sensitivity of things when speaking with me. I’m not saying every person with CF should be open about their disease. You deserve privacy. But the very noticeable difference makes me realize how much of the insensitivity was based off people not understanding my situation rather than irrational maliciousness.*** I deserve privacy, but I shouldn’t let that privacy be the source of anger directed towards society. I think it’s okay to gently inform people that what they’re saying is insensitive — it could help them and others in the future — but viciously (or even passive aggressively) attacking only ever led to more anger.
These realizations also helped me to feel more sympathy for others. I don’t know all of your problems and I definitely can’t measure the emotional/physical toll they have on you. I don’t know what it’s like to be poor, I don’t know what it’s like to have the flu without ever being sick before, I don’t know what it’s like to feel oppressed, I don’t know what it’s like to be bipolar, I don’t know what it’s like to not have awesome parents, etc. Everyone has problems and everyone has different perspectives. I don’t want to focus on who has the worst problems (which is really perspective-based). I want to focus on how we can love and help each other.
I’m partly writing this as a public pledge. I welcome you all to remind me of these words if I stray, even if within these blog posts or in private discussions. My new year’s resolution, starting a month early: be more sensitive to how my words affect others, don’t let anger fester over misunderstanding, and treat other people’s problems with respect and love.
***I’m not saying this is always the case. Some people just like to hurt others. That sucks.