What my relationship taught me about living with cystic fibrosis

I struggle with needing help and not having answers. I’ve always wanted to be calm and collected in challenging situations. I don’t like feeling panicked or out of control, which means I don’t like expressing emotions before I’ve had time to process and understand what I’m feeling. Over the years, I came to feel like there wasn’t much about life with cystic fibrosis (CF) that I hadn’t contemplated and couldn’t offer some perspective on.

Then I met my fiancée, Jessica.

Those who know me know that I ask a lot of questions. (My parents recently cleaned out their basement and discovered I was awarded “most questions asked in a single class” in eighth grade.) Jess is much like me in this regard. I’ve never been ashamed of having CF, and I’ve always welcomed questions from others, so when I told Jess she was free to ask me whatever she wanted, I meant it. I was still unprepared.

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Tré LaRosa and his fiancée, Jessica Burns, enjoy an evening in Port Angeles, Washington. (Courtesy of Tré LaRosa)

Jess and I both realized early on in our relationship that we were highly compatible. When I realized there was a chance we’d eventually get married, many of her questions about living with CF took on a greater meaning for me.

For instance, questions about having children — which had previously been abstract and philosophical — now felt real and required a different perspective. I also felt a greater sense of responsibility when discussing the implications of a shortened lifespan. I had previously joked about this (dark humor is common in the CF world), but now I had to wonder if I’d truly accepted the possibility of a shorter life, or if I’d just been masking with humor.

I soon realized that her questions were rooted in more than pure curiosity; they came from a genuine desire to understand as much about CF and how I experienced the world as she could, so she could be the best possible partner to me. Her enthusiasm and interest led me to recognize that my CF was not a limitation, nor what defined me. Her commitment to understanding my life was about building a shared universe together. She wanted to catch up on the history that she hadn’t experienced herself.

I began to think about life in a very different way. While I had often reflected on how my CF affected others, I still felt like it was my life and my disease. As my relationship with Jess deepened, CF was no longer mine alone, but a shared part of our lives and future together. It was clear to me that Jess understood this, too.

Now that I’m in my 30s, I rarely encounter novel aspects of the CF experience, but this bourgeoning lifelong relationship introduced a paradigm shift. Many of my fears and dreams somehow became both heavier and lighter.

The truth, whether we like to admit it or not, is that CF infiltrates every part of our lives; for decades, I’ve had to weigh the disease in every decision, job, move, and opportunity. This constant specter is overbearing, frightening, and discouraging. Many times, I’ve wanted to rage CF away. How could I not when I watched this horrific disease steal my sister’s life before she turned 30?

But CF does permeate my life. I’ve always understood this on some level, but I’m not sure I’d really accepted it until I met Jess. I still struggle with not handling everything on my own. I know that level of vulnerability will take me a long time to reach. But my relationship with Jess has taught me that accepting CF means that this weight isn’t just mine to carry; it’s one we must share.

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.