Living with Cystic Fibrosis is difficult, lots of breathing treatments, pills, hospital stays, and the list goes on. CF is a multifaceted disease and we talk a lot about what it does to the body physically but we forget what this chronic and progressive disease does to the psyche. Many patients with CF deal with feelings associated with depression and anxiety. I can imagine the thought of death, dying, and feeling your body worsen to the point where you can’t do anything for yourself can put you in an emotionally unhealthy situation.
Sadly, those with CF do not only have to worry about their own feelings they have to concern themselves with the thoughts and unsolicited rudeness from others, which is why I am writing today. Earlier this week, while Scott was at the gym a man had the audacity to say something to him about being at the gym while sick. I want you to know that going to the gym with 28% lung functioning is difficult. It is hard to get up and force oneself into going. He does it because he knows that it is beneficial to his health. It is beneficial for his lungs to feel the air move in and out with pressure to help release mucus plugs that are stuck. It is beneficial for his muscles to be strengthened so when he is bedridden for weeks during transplant he will have extra “fat” to loose. It is beneficial for his bones to get moving to help with the osteoporosis. It is beneficial for his mental well being to feel like he has accomplished a workout. His typical daily workout consists of 10 minutes of walking and a few sets of exercises that use weights. It is by no means a heavy duty workout at this point in his disease. He coughs a lot, breathes very heavily, and probably looks like he is going to fall over and pass out. It is something that most of us could do with ease, but for Scott it takes all he has to get through the routine. So it breaks my heart when I hear that someone has made him feel sad.
Going to the gym is literally a life saver for Scott, it is building his body up so that transplant is a possibility. It is also producing the endorphins that make you feel good, and keeps him in a positive mood when life can seem a bit grim. But thanks to the rudeness of others it at times can be difficult to go. The continuous evil stares, the complaints to the gym management (they know about Scott’s situation and educate those that complain), and the handful of hateful comments are too much sometimes. So Scott and I have a plan — we are going to make some shirts to help others understand and this is what they are going to say….
Yes, this is direct. Yes, this sounds awful, but it’s the truth. If Scott does not get new lungs these will be the last few years that he has with us. Maybe it will get others to think and have compassion and kindness before they speak. Maybe it will be a conversation starter. Maybe we can spread some more awareness about CF. Either way, you never know what’s going on in someone’s life, so let’s think before we blindly tell someone “you shouldn’t be at the gym while you’re sick” or any other rude comment. Let’s spread some kindness in this world. Let’s be the light.
Breathing out the negative vibes,