Not Feeling Sick Enough
When asked in interviews for tv stations, newspapers and conversations about my CF, I tried to think of my absolute worst day. I wanted to make CF sound as horrible as it could be because the people whom I spoke to could be monetary donors, organ donors or volunteers. I wanted to assure them that even though I as a CF patient look “normal” that my illness was very much present.
When CF exists in so many different forms, genes and extremities, I wanted to make sure that if I was given a voice to advocate that I better use it to show how horrible CF can be. The truth is, some days I didn’t feel like CF was too harsh. Granted, I don’t know any different because I’ve had CF since I was born, as has every other CF patient. Yet, I found myself comparing myself to everyone else. It caused me to have a poor sense of my identity and made it difficult to figure out my personal relationship with CF. I felt so lucky to have been relatively healthy for most of my childhood but I still felt weird that I hadn’t shared the same experiences that other CF patients had.
As a child I had never gone on IV antibiotics because my clinic resorted to oral antibiotics most of the time. This was a blessing but I always questioned why I wasn’t in the hospital as much as others. I also saw people on TV, wearing oxygen and I questioned why, if I had the same illness, why didn’t I look like them?
Additionally, I didn’t struggle with weight as I got older. When I was young I was super skinny with a bloated belly. In high school I maintained my high fat CF diet, yet I began to gain weight rapidly. I felt like I was too heavy to be a person with CF. I felt like since I didn’t experience “tune-ups” that I was too healthy. This concept feels insensitive because who would think they are too healthy? But I felt bad telling people I had CF when I was having a good day. I didn’t want to represent the community poorly when I didn’t feel like I was sick enough.
A certain level of sick
I was even the poster child for the CF pamphlets but I didn’t feel like I had earned my place there since I wasn’t dealing with CF like others had. I never felt that I was sick enough. On the other hand, some days I felt that I was too sick. It was all in my head, that I had to be a “certain level of sick” for my story to mean anything to anybody.
One day I met a man who had a rare mutation of CF. He was in his 40’s and never had to do treatment or go to the hospital. I noticed that he didn’t cough or wheeze. He explained that with his mutation, CF looked quite different on him than it did on me. That is the beauty of it, that we all have our own CF stories because I believe no two illnesses present themselves alike.
Yet, we can still sit under the same umbrella and feel welcomed in a community that understands us and knows what we’re going through. Its parts of CF life like these feelings that bring us together because we share fears, hopes and thoughts that we can all relate to.
How much of a financial burden has dental work been to you?