Living with cystic fibrosis, I never really planned for a wedding. Before Trikafta® it seemed like such a distant dream. I was fearful to plan and to get excited only to never have it happen. So, when my health was the most stable it had been in years, I got engaged to my amazing now-husband — and there was a lot of mental adjustments that I went through. I somehow had to process how to be excited about a life event that I had prevented myself from even thinking about, learn how to be a bride and a CF patient at the same time, and ask myself “what do I do if I got sick?” I hope that my three pieces of advice resonates with another person with CF as they say “yes” or pop the question and begin planning their magical day!
Allow yourself to be unapologetically and loudly excited.
Growing up with CF has always kept me “waiting for the other shoe to drop,” especially when life feels like it is going too well. In the past, I wouldn’t plan too far ahead in case I got sick or had to cancel, and, worst of all, so I didn’t get my hopes up too much if CF had to take priority over whatever I was planning.
My advice for your wedding is to resist this urge we’ve been conditioned to have. It’s hard to allow yourself fully to embrace the joy and excitement if you are simultaneously fearing something happening. Be excited. Plan the wedding you dream of. Be a person — a bride or groom — before you are a patient this one time. If something happens, have backup plans just in case, but focus on the joy. If the fears get louder, talk about them. Don’t let them live only in your mind. Sometimes voicing fears out loud and looking at them head on allows you to see how unfounded they are.
There is an old proverb that says to “feed the good wolf.” Let yourself be fully and overwhelmingly excited rather than sitting in fear that CF will steal the show.
Whether your wedding goes off without a hitch, or if you end up getting married on IVs in a courthouse, this is about you and your significant other committing your lives to one another, and not to CF.
Keep yourself healthy!
Weddings (and planning for them) can be stressful — and anyone who tells you differently I would like to personally ask what planet they live on. Even with everything going on, remember you must put your health first! What is the point of a great party if you feel like crap the whole time? Plan a time to get your medications done and prioritize them first before any events (yes, even on your wedding day). Delegate to loved ones or the wedding party so you can support yourself. And, try to stay conscious about germs, even with loved ones! My husband and I, unfortunately, spent our mini honeymoon passing a tissue box back and forth in a hotel room and timing our next doses of cold medication after our wedding because we picked up cold viruses from family members. Learn from our honeymoon of runny noses and coughing to still be vigilant about germs. (A virus can still find you in the Caribbean in May, as my husband and I experienced.)
If you do get sick, it doesn’t mean you failed or did something wrong.
After our snot-filled honeymoon, we found out we had contracted RSV; a month later I still hadn’t quite shaken the cough and cold. What we had been trying to avoid since getting engaged happened; the germs I caught at our wedding sent me to the hospital for IV antibiotics for the first time in more than a year.
At first, I was furious. “I can’t even have the best day of my life without CF trying to take a piece of it,” I thought. I was angry. I felt I did everything right, even doing my breathing treatment the day of, making sure my husband was carrying enzymes in his wedding jacket pocket, and being the first to bed throughout the whole wedding weekend to stay healthy.
But, as I sat and talked more with my family and doctors I realized, this wasn’t CF winning or taking away from my wedding. I had an AMAZING, dream-come-true, best-weekend-of-my-life type of wedding. CF didn’t take that away from me.
Yes, I got sick, and yes, I needed IVs, but that didn’t mean my CF was getting worse or I had done something wrong. It simply meant my body had experienced a once-in-a-lifetime event and needed a little extra help for a very understandable reason.
As I’ve grown, I’ve learned that trusting my body doesn’t mean it never gets sick or never has an exacerbation. Trusting my body has evolved into trusting that if my body needs help, it will tell me so I can work to get back on the top of my game. My body and I are never working against one another, but instead as a team to stay as healthy as possible. I know my body worked SO hard to keep me so heathy leading up to and during my wedding, and after all that hard work it needed a little extra help, and hey, I get it!
My wedding was one of the most beautiful moments of my life, and I know I wouldn’t have been there without the amazing help from my doctors at Johns Hopkins Hospital. I was honored to have my doctor, Christian Merlo, who has helped more than he knows to make this day happen, as a guest at my wedding. I remember times where I sat in a hospital bed having hard conversations about my CF, treatment plans, and not knowing what the future would hold. A wedding is about inviting the pivotal people of your life who have supported you to celebrate that day with you; having Dr. Merlo there to celebrate a joyous chapter of my life was one of the most special wedding presents I could have asked for! I hope these small insights about what I learned from my wedding can help you to plan yours, and above all else, to be so unapologetically happy!
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