I Keep Forgetting CF Is Invisible
I often hear, “CF does not define me.” However, while cystic fibrosis (CF) does not define me, it is a part of me. It has helped shape who I am as a person. So, it does define me. It defines me in the same way that being a musician defines me or my love of dogs defines me. Single attributes do not make up my entire identity. Rather, they are different facets of my identity — CF, while invisible, is one of those facets.
Recently, I spoke to an acquaintance on Instagram for the first time in a long while, and I filled her in on the saga of my service dog’s recent weight loss. My service dog is transitioning from a big puppy diet to an adult diet, which can be a little tricky. It takes trial and error to figure out the speed of a dog’s growth. I guessed wrong and decreased the amount of food a little too quickly. He was down 2 pounds and acting hungry, so I increased his food.
Enter Trikafta (elexacaftor/tezacaftor/ivacaftor). We started running around and working more, thanks to the boost in energy and stability. I even started walking a mile a day to get my body back in shape. I didn’t realize that my dog would be burning extra calories as well. He was down another pound, so I increased his food once again.
As my Instagram acquaintance and I discussed my service dog, I mentioned how amazing it is to have more energy and not cough as much. Her responses suggested that she didn’t know about my CF and didn’t want to ask. I assumed CF had come up at some point during our chats or that she had seen it on my profile somewhere.
CF is such a big chunk of who I am so it’s hard to remember that CF is an invisible illness. Not everyone knows I have it!
On another occasion, I shared my goals for 2020 with my co-workers in an app we use for work. Many of my co-workers have encouraged me over the past couple of years. They have supported my fundraising efforts, checked in after doctor’s appointments, and have helped keep me sane. Because they are familiar with my situation, I included some health goals on my list.
One goal was to keep my lung function above a certain level. I didn’t take into account, however, that a few employees were new and unaware of my health situation. Right after I sent my list of goals, one of the new employees wondered whether he should test his lung function. He didn’t realize there was a reason for my impaired lung function.
I often assume everyone knows that I have CF. Even though CF is invisible, it’s as much a part of me as my blue eyes and brown hair.
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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.