Last updated: June 2021
Living with cystic fibrosis is living with a disease no one will really realize you have unless they know the details of your day-to-day life. Cystic fibrosis is an invisible disease, and with it comes the terms that many do not seem to understand quite clearly.
Having a disability is not something to be ashamed of or something that we need to shy away from. Cystic fibrosis has different ways of affecting our lives. For example, while many of us with CF can work full-time jobs, some of us cannot and may need to be on social security disability.
My cystic fibrosis is invisible
Cystic fibrosis is an invisible disease and the primary reason is that you can not see it. It is not obvious unless you show it. Many of us need oxygen or other assistive devices to help us in our daily lives, but it is invisible most times. Inside we fight every day and deal with our struggles with strength and grace.
I can not explain the number of times where I have had someone tell me that I "do not look sick," and how I "do not look disabled." Unless I am walking with my walker or oxygen, I am--in the eyes of others--“healthy.”
I think a lot of people judge things they do not understand fully. There are people living with cystic fibrosis that are living their lives as they fit. They swim, they run, and they work in any field they are passionate about--and there are others living with the disease that are home, hospitalized, or going through pre- or post-transplant. Whatever stage of our CF we are in and whatever journey our CF has taken us is incredibly unique.
I am disabled
We all suffer this disease differently and that is okay. In my case, I am in a stage in my CF journey where I am disabled. My body is just going through the motions of it. I struggle to breathe and do things that I never used to struggle with before. I struggle walking because it has become painful and I use my walker most times.
I used to be able to do so much. I can not do them anymore--and that is okay. But life changes with CF.
My disability is real
Unless you know my daily struggles and how I live every day with this disease, you would not know I was sick. My outside most times does not match how I feel inside. Unless I am extremely ill, and you see my dark circles under my eyes from not sleeping well, and I am pale from struggling to breathe, there is not much for anyone meeting me to guess that I am fighting for my life every day.
Behind closed doors, I struggle to do simple things because, at times, I am just hurting so much. I am coughing up so much mucus; I make more than I can cough out at times. Pain has become my normal and I do not remember life without it. I do not remember what it is to struggle, to simply go up a flight of stairs or walk through the store without getting exhausted. It is my CF journey, invisibly.
Do you struggle with your cystic fibrosis feeling invisible? Share your experience with us.
Have you participated in clinical or market research before?