I am more than a person with a genetic disease

Cystic fibrosis (CF) tends to take up a lot of space in my life. Sometimes it’s so all-consuming that I don’t get to focus on anything else, and I must wrestle to separate my identity from this label that I never chose.

But CF is not my whole life story. I am more than my disease. I’m saying it out loud because CF has taken up a lot of my time lately. I want this to serve as a reminder to myself that there is so much more to me than just my health status, even when it doesn’t feel like it.

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The most important part of me

Separating who I am as a person from CF has been vital for my overall well-being. Acknowledging that I’m a person apart from the disease I have matters to me. This illness isn’t the most important part of who I am. It’s taken me a long time to learn this life lesson.

I know I must continually check on my health, but it’s so important to me that my thoughts aren’t always centered around everything attached to CF. That’s not conducive to balance, and mental, emotional, and spiritual imbalances make it harder to cope with physical health issues.

Sometimes I feel like I’m in some subgroup that’s separated from everybody else. I’ve been treated that way in the past, which is common in the disabled community. And sometimes my sense of self gets lost amid the statistics, test results, treatments, appointments, and never-ending health maintenance. I’m continuously analyzing the functionality of each organ and body part, making remaining present in other aspects of my life a big challenge.

It’s a full-time job to live with CF along with the double-lung transplant I had eight years ago. I fight to balance my health with the things that are important to me.

I have dreams, desires, and interests beyond my diagnosis. I am uniquely designed with gifts and talents. I have deep, meaningful relationships in my life. My career as a therapist is rewarding. I love to travel, explore the outdoors, go hiking, camping, and kayaking, and adventure with my husband. Prayer is also important to me.

I’ve walked through seasons of grief as well as unexplainable, abundant joy. Meeting people from all over the world has been one of my favorite things. Personal growth is important to me. And helping others deeply matters to me. I’d like to think that when people look at me, they see more than CF, that my identity is not just about my health circumstances.

As part of this year’s CF Awareness Month, I’d like to remind everyone that there are people behind the diagnoses, and that our lives hold so much more meaning than just our disease.

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, and are intended to spark discussion about issues pertaining to cystic fibrosis.