"The Illusion of Being Healthy" by Elena Goodrow

“You look so healthy!” is something I hear quite often, and it’s true. I don’t “look” like I have a chronic illness, but what does being sick look like? People often have an image of a sick person in their head, and most of us that live with an illness do not match that image. Every time someone says to me, “You don’t even look like you have CF, you seem so healthy!” part of me wants to reply, “Well, the aching in my lungs and the intense pain in my stomach isn’t exactly visible.” Obviously that sounds blunt and can be interpreted as very rude, so I would never say that to someone. It can certainly get irritating having to navigate people’s comments and assumptions about my health.

I’m fortunate enough to be in a very steady place with my health. My lung function is stable and I have responded well to Trikafta. That doesn’t mean I don’t have bad days, and that’s something I wish the general public understood. Even people within my family have a difficult time understanding that I am not as healthy as I may look. The message of Trikafta being a miracle drug has been circulating heavily for the past few years, and it’s absolutely true. Trikfata has made a tremendous impact on so many lives. However, that doesn’t mean it erases all CF symptoms and there are still people that have not had the chance to take a modulator at all. I have found that many people I interact with assume that because I am on Trikafta my CF is basically cured. They are shocked when I tell them I still do my breathing treatments and take all my medications, and even more shocked when I tell them about the negative side effects that myself and others have experienced. They are only seeing the tip of the iceberg. “Healthy” is an illusion. There is so much more going on that cannot be truly understood unless you’ve experienced it.

I’m also reminded of the fact that I am not as “healthy” as what is outwardly displayed. The past few weeks I have been battling a lung infection, been on multiple courses of antibiotics, begun doing my vest treatments again, increased nebulizer treatments, and additional doctor appointments. Some people in my life are shocked, but I remind them that regardless of what is going on with research and advancements, I still have CF. I have a chronic illness that brings challenges that don’t go away. I am so grateful for all the positive impacts that new medications have had on the community, but I always remind myself and others that there is still so much research that must be done. Regardless of what medications I’m on, I still have CF. “Healthy” isn’t always what it appears to be.