As the longtime spouse of someone with cystic fibrosis I try to share my experience with those earlier in their journey. One question that has come up repeatedly from young people with CF is the best time to tell someone about the disease. This is one of the hardest questions to answer but I’ll do my best to explain my logic.
The reason why this is such a challenging question is that I don’t know what scares people away. I only know my reasoning for making the decision that I made to date (and eventually marry) someone with such a devastating disease. Much of it boiled down to the fact that we don’t know what tomorrow brings. I’ve heard gut wrenching stories about people dying on their wedding day or other freak accidents occurring that nobody could have predicted. It’s almost egotistical to think that you know how and when things will end for yourself or anybody else. So, if I get hit by a train tomorrow, I want to feel like I lived life fully in my time leading up to it.
That leads me to the second lesson from Lessons from a CF Cornerman. “Sometimes you have to trust your instincts, take a risk, and not focus on the worst that could happen.” Since we don’t know what will happen, why assume the worst? There could be improved treatments, new surgeries, or even a cure. When I met Rebecca at 20 years old, the life expectancy was 30. When we were 36, it was 38. We’re now 42 and it’s in the early forties. This increase is due to improvements in care and treatment options that has been driven by so many dedicated doctors, scientists, and volunteers. We are closer to a cure than we have ever been. There are now CFTR modulators that can improve the lives of 90% of the CF population as well as the recently announced CF Foundation’s Path to a Cure which promises to bring us ever closer to curing this disease. There was no way of knowing any of this in 1998 when we met. I had to take the first step without knowing where the stairway would lead and I’m glad that I did.
And though I know how important every relationship can feel, if someone can’t handle it, it just might be better off if they left before things get bad. I spent so much time in the hospital with my wife and sometimes it is routine while other times it’s the furthest from that. If I couldn’t handle it and left my wife on her toughest day, there would have been nobody there to advocate for her. At the risk of sounding self-important, if I did that she may not still be alive. To me that is a powerful message about who you surround yourself with. So in my opinion, if someone can’t handle your particular issue or disease, you’re probably better off without them.