Living my life with cystic fibrosis, and then sharing that life publicly through social media, has brought many questions into my inbox over the years. But there is one question that always stands out: How has my relationship withstood the tests of CF? Nick, my partner of three years, and I have been through plenty of tests, CF being only one of them. From meeting in Thailand, to long-distance dating over three time zones, to moving -- and we can't forget all the things that come with normal relationships mixed in -- it's safe to say it has been an adventure.
When people ask how we make it work, many expect a response including some Harry Potter love potion, fairy godmother, or possibly a genie in a bottle. I hate to contradict the theory of magic, but it involves none of those things. I believe there are three nonmagical elements that make our relationship work:
- You can't be loved until you love yourself. One thing I spent a lot of time on before I even met Nick was setting myself up to be available to receive love. I realized I couldn't be loved in the way I deserved if I was looking for someone else to fill a void CF created in me. I often felt unwanted, damaged, and frequently had the thought, “Why would someone to want to sign up for this?” What I have learned in my 26 years is that everyone has SOMETHING. Every single person has something in his or her life that they are scared to share, to open up about, and baggage they are terrified to show someone else. Mine simply has the name of cystic fibrosis, but it can come in many forms. There is no “normal,” and in a beautiful way, that's what makes it so much easier to love and connect with one another.
- You can't fall in love with a mask on. Particularly in the chronic illness community, we wear so many “masks” to the world around us that don't truly reflect how we feel inside (and I'm not just talking about the masks we wear at clinic). I have always been the perpetual “I'm fine” sick person. Whether it was my desire for everything to be okay or wanting to minimize the pain or fear that my disease caused in others, I knew that for Nick and me to work, I had to destroy my mask and throw it away. If I had kept this mask-- my false portrayal of who I was -- Nick wouldn't have fallen in love with me, he would have fallen in love with my carefully crafted mask. When you find the person you want to build a serious relationship with, you have to be your authentic self with all of your flaws, insecurities, fears, and skeletons that you hide from the rest of the world to make a safe place for you both to grow together.
- Allow your partner to develop his or her OWN relationship with CF. When Nick and I met, he had no idea what cystic fibrosis was, aside from some medical term he may have heard on an episode of House MD. I, on the other hand, had clearly lived, breathed, and fought this battle every day of my life.
I could have printed out all 22 years of medical records on date number two and expected him to learn it all by the next morning, but that wouldn't have been fair to either of us. I had all of this knowledge and “baggage,” so it was understandable for me to think, “Well, if you want to love me, this is what it is, take it or leave it, buddy.” But that was the fear talking, the “no one will love me” fear that CF instills in us so early on.
What we had to do was have continual two-sided conversations about CF. It would be all too easy for me to simply spit information at him, but that would be a monologue, not a conversation. He learned about CF, bit by bit, experience after experience, one medication after another, like I did so long ago. I had to take it upon myself to give him the space and time to develop his own questions and his own concerns about CF so we could come together and discuss it. By allowing Nick to develop his own awareness, education, and understanding of CF, we have cultivated a safe space for us both to express our concerns, feelings, and thoughts rather than just centering around my own concerns and feelings. In a relationship with CF, it no longer is only your burden to carry, and that's what makes it beautiful and difficult at the same time.
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