For years now, I've read endless accounts about people with cystic fibrosis and their supportive significant others with whom they share their lives. Living with a chronic illness has left me guarded and leery about relationships, and I have longed to find inspiration in someone else's story. Dating is a precarious game, no matter the circumstances, but I had never once read about what this playing field looks like when you throw CF into the mix, and, more important, advice on how to share this with a partner. I want to share my story about when I met a man who showed me kindness, support, trust and compassion in a way that I had never known, and how I explained my CF to him -- on my own terms.
Some people wear their battle scars on their sleeves, but not me. I hold my battle with CF rather close. It is only when I find myself in a situation with a person who is worthy of my trust and makes me feel comfortable that I will disclose my CF. It is not an easy disclosure to make, and I have always contemplated how to help someone understand that CF does not define me, but it has made me the person I am today.
When I met my boyfriend, Andrew, he told me on our first date that he struggled with a health issue. While hearing that we both shared this in common was comforting and reassuring, I still waited to tell him about my CF. I wasn't ready. Soon thereafter, I did tell him, and it happened very organically, which was key. It started with a query into my enzymes the first time we ordered takeout. I'll always remember his initial reaction to my introductory explanation of CF because it was a reaction that I had never gotten before. It didn't scare him, and in fact, it showed knowledge.
“Oh, cystic fibrosis. Isn't that what Boomer Esiason's son has?”
YES! Yes, it is. “I think I like you,” I thought to myself with a smile.
I believe that this initial conversation about my CF helped set the pace for further discussions down the road, including explaining my chronic cough, daily breathing treatments, shortness of breath, and acknowledging my port. I explained my port to Andrew only a few days before needing to go on IVs for the first time in six months. This conversation meant venturing into new territory and, honestly, I was scared. But in the end, it went better than I could have hoped.
All relationships are different, and there is no given formula for us all to get through a conversation like that, but I can offer my best advice: be honest and true to yourself. This is your reality, and if someone cares enough they will learn to share this reality, too.
If they don't, that person is not right for you. It sounds trite, but when life hits you the hardest, sometimes the most clichéd advice rings the clearest.
As I get used to letting Andrew into my inner circle, I've come to take pride in how I manage the hand that I was dealt. I believe that we get back the energy we put out into the world. Not in a karmic sense, but more literally -- if you want to create a panic, your best bet is to start panicking. As our relationship grows and I explain different aspects of my life with CF to Andrew, I try to do so calmly and pragmatically. In return, I have found someone who puts me at ease when I am most vulnerable.
That day after I told Andrew about my need for IVs, I received the perfect text from him: it thanked me not only for telling him, but also for explaining things. He was supportive, and best of all, he threw in a little joke, which is one of the many reasons why I love him. The way I see it, if you can't have a sense of humor about life, then it's been nice knowin' ya.
Do not let your battle with CF close you off to finding the right person to share your life with. Embrace it as part of who you are, and a special person will see the beauty in this.
July 2017 -- We were deeply saddened to learn of Amanda’s passing. Amanda opened her home to us for a photography shoot in 2016, and her heart to the CF community through our blog. She will be missed by many.