In Sickness and in Health: Telling my Partner I have CF

I have lived with cystic fibrosis (CF) my entire life, I know it like the back of my hand. With CF being a rare disease, there are still a lot of people who don’t know of its existence, let alone understand it. When I wanted to start dating, I knew that this would have to come up eventually, but I didn’t exactly know when or how. I’m going to talk about the initial parts of my current relationship that intertwined with CF and how they went.

Coming clean about my cystic fibrosis

When I first met Eric, my boyfriend, I didn’t tell him about my CF. It didn’t seem like first-date material. When he came to my place for the first time, it was difficult to ignore the giant vest, compressors, tubes, and medication boxes stashed up on shelves. He was probably trying to be respectful by not interrogating me about what all this junk was. I decided to tell him what I used it for since I could see his eyes wandering around the rooms. It was kind of an elephant in the room. I asked him if he knew what CF was, and he said he had heard of it but didn’t know much. I told him I had it and then explained in simple terms what that meant for me, where I am at, and what my future looks like.

How did he take the news?

He took this news way better than expected. He didn’t seem too shaken up about it, it was almost as if I had told him I had a dog. A bit of work, but nothing we can’t handle. In our first month of dating, he didn’t bring it up. I tried to bring it up here and there, casually, because I wanted him to know that it was okay to talk about. I am an open person, and I like to lay everything out on the table. He always listened and didn’t ask many questions which made me worried that he would be the type of person to bury their head in the sand when it comes to medical stuff. Looking back, I think he just didn’t know what to ask. I appreciated that he was a great listener because it was a quality I was looking for in a partner, considering I like to talk through things.

Diving deeper into our relationship

When I started to tell him about my CF appointments, he started to ask more questions. I think it was scary for him to hear about my lung function decline or my malnutrition. I started to talk to Eric about my pain, my bad days, and my sadness. He always made me feel better through talking and listening. But he never let it affect our relationship and that was the best reassurance he could ever give me - business as usual. There was an acceptance there, even if neither of us could see it. This doesn’t mean there was a lack of fear towards CF, there was a lot. The anxiety was accompanied by anger and sadness on both our parts, illness was and is still a damper in our relationship, but we can separate the sad times from all the love and happiness we share in our relationship. It’s one of the many things we have in common, we hate CF!

Bonding in our hope

I always followed up my bad news with news about the future of Trikafta. It reminds me of when an interviewer asks what my greatest weakness is, I try to spin it positively at the end. I think that knowing Trikafta was coming kept our hopes higher than they would have been. I started to send him news articles about the progress of Trikafta being created, and when it became available. We started to bond over the excitement it brought us to know that not only would I have a good future health-wise, but our relationship would have a future. The best part about Eric being around is that I don’t have to battle my illness alone, I can say “we” are hopeful, and “we” are fighting it together. Just as I do with my family, my friends, and now my partner.