I got married in October of last year. It was 70 degrees and sunny; a perfect fall day for a wedding in Kansas City. I was marrying the best man I've ever known, and I felt privileged beyond what I deserved. Standing at the altar, the occasion really hit me hard. And when he wholeheartedly agreed to love me in both sickness and in health, we knew those words carried a lot more weight than just a line within our vows.
Throughout my life, I have been lucky enough to have had a solid cystic fibrosis support system. Before I met my husband Kory, I had my parents and my siblings. As rare of an occurrence as it is, my brother, sister and I all have cystic fibrosis, and we were fortunate because our parents assumed a lot of the responsibility of our disease. My dad mostly handled the financial side of this chronic illness, and my mom mostly handled our care.
From the day I was diagnosed at age 7, all the way through high school, my mom took the driver's seat in the management of our CF. Like most teenagers, I think my sister and I thought we had everything all figured out. In reality, we weren't even ankle-deep in what it takes to fully take on cystic fibrosis -- we had a lot of help. I never had to feel like I was alone with my disease. I never had to worry about how I would afford a yearly insurance deductible or wonder how I would get myself to the hospital. I definitely attribute much of my good health to my support system. This disease would be much harder alone.
So the day that I left for college was a scary one. I did the usual, “Oh, I'm so ready for college. I can't wait to get out from under my parents' roof!” song and dance. But then I cried beneath my sunglasses as I pulled out of my hometown and onto the highway. Nostalgia and a fear of the unknown were setting in, but there was also something else there. The worry of how I was going to keep myself healthy on my own weighed heavily on my mind. I wasn't sure I knew how to do that.
Under my mom's care, I hadn't been hospitalized since early high school, but by my sophomore year I had landed myself in the hospital. Handling my care on my own was proving to be difficult, and the next few years were challenging as I learned by trial and error. Sticking to a treatment regimen, paying close attention to my symptoms, not forgetting to refill prescriptions and being a normal college student was tough.
Throughout high school and college, I had friends and boyfriends, who, at varying levels, understood my life with CF. Some of them were great and would even hang out with me while I did treatments or come visit me in the hospital. But some weren't so great.
In college, I dated a guy who dumped me while I was in the hospital because my CF scared him. In the end, it was a good thing I had a “built-in” screening process because relationships like that would never have worked out anyway.
Luckily, towards the end of my junior year of college, I met the man who, a year and a half later, would ask me to marry him. We hit it off almost immediately, and it was clear that my CF wasn't a deal-breaker.
Kory knows how important it is for me to do treatments and exercise and makes sure to remind me of that if I sometimes forget or lose motivation. An added bonus is that he works in health care administration, so he understands hospitals and clinics. Kory is the best partner I could have asked for. He is selfless when it comes to my medical needs, takes a true interest in my health and is willing to do whatever it takes to make sure that I am happy and healthy.
I believe that a strong support system is everything when it comes to managing this chronic illness. I attribute my good lung function and overall good health to the support that I have received and the genuine interest that people have taken in keeping me well. A support system is there to hold you accountable and to make the long and winding road more of a journey than something we're just getting through.
Having a husband who assumes the role of my primary supporter has been one of the greatest blessings in my life. I can only wish the same for my brother, sister and other adults living with CF.