My Changing Support System

I definitely attribute much of my good health to my support system. This disease would be much harder alone.

| 5 min read
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Morgan Barrett
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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.

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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.

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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.

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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.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Morgan lives with her husband, Kory, and twin babies, Alder and Winslow, in rural northeast Kansas where she enjoys gardening and chicken-keeping. She has many interests and is always entertaining her curiosity, but her mainstays are spending time outside, reading, writing, photography, and cultivating a relationship with plants. She grew up with two younger siblings, Allison and Mason, who also live with CF. You can follow her on Instagram. P.S. Beets, Bears, Battlestar Galactica.

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