Blessed with a Built-In Litmus Test: Dating with Cystic Fibrosis (CF)
Dating is hard. Living with CF is hard. Dating with CF is its own special blend of hard. When we date, we go through a process of getting to know another person, and figuring out if we think they could be a potential match. When we live with CF, we strive to maintain our health, incorporating medications, breathing treatments, physical therapy, and various other methods of self care into our daily lives. Even if our care plans are minimal, eventually, in the process of being invited into our lives, our potential matches will be exposed to the fact that we live with CF. So when do we disclose our CF to a potential match? How much information do we offer? What do we wish our partners knew about CF before entering into a relationship with us? Does CF get in the way of developing a long term relationship? Is ~TrUe LoVe~ possible? Drawing on my own experiences, I’ll attempt to answer some of these questions.
Telling other people that you have CF is a personal choice, and you don’t need to tell every person you meet. I think that the type of relationship you’re seeking plays into this decision heavily; if you’re not looking for something serious or long term, does the other person really need to know this intimate detail about your life? I don’t think so. If you don’t plan on introducing this person to your family, then there’s probably no reason to introduce them your CF either. Of course, if you tend to cough to the point of producing sputum during sex, then maybe informing them that you have a lung condition that’s not contagious might be pertinent.
If you are looking for something more serious or longer term though, I think that timely disclosure is important. People don’t like to feel like they’ve been lied to via omission, so telling your potential match, before they stumble upon your equipment or find your cabinet full of medication and supplies, is the honest thing to do. For me, this usually involves small vague disclosures that lead up to a more dedicated conversation. For example, most of my first dates involve food, and I take digestive enzymes before every meal, so my first disclosure is usually an answer to a question about that:
“Oh, these help me digest my food and absorb nutrients properly.”
Sometimes there’s a follow up question or two after that, but I know that do not owe a first date a full medical run down of how and why my pancreas doesn’t work, so usually, whatever conversation was happening before I took my enzymes, just keeps flowing. This is a boundary I have set, and it is one that took me years to stick to implementing and keeping. Sometimes, I get a compassionate vibe from somebody, and I do disclose in that moment. It’s a choice, and I feel empowered to make it. If we think about the ways in which our invisible illness exposes itself throughout our day to day lives, we can think about which moments might be opportunities for small vague disclosures like that, and make plans for setting boundaries around those moments.
Once it becomes clear that I want to create a relationship that’s longer lasting with a potential match, I bring the topic up at the beginning of a meal. I like dinner dates because they tend to be about two hours long. I will usually reiterate all of the vague disclosures, and mention some moments where disclosure could’ve been opportune (like if I CF sneezed and they had witnessed it or something like that), and then I lay it out unambiguously:
“I have a condition called cystic fibrosis, and it affects my lungs and pancreas. I take medication daily to treat the root cause of it, and my health has been stable for a few years.”
Most of the time, this disclosure is followed up by an onslaught of questions, which is why I like the two hour dinner date format. I can explain what my CF has looked like in the past, how modern medication have changed my life for the better, and what my future with CF likely looks like. Food comforts me too, so in the off chance that somebody has already experienced loss at the hands of CF, I can take a few bites of warm comforting deliciousness, while swallowing my sadness and survivor’s guilt, before going on to explain that everybody’s experience with CF is different. I usually tell people not to Google CF, because I don’t think that many are equipped to digest some of the information. For example, the layman’s interpretation of life expectancy as an expiration date is supremely frustrating. I’d rather people learn about CF through my sharing my experiences with it, than for them read about worst case scenarios on the internet.
It also usually comes up that CF is genetic, and because of this, sometimes questions about passing it on to offspring come up. I have established a strong boundary around this topic during this particular first discussion of CF. I will answer matter-of-factly:
“CF is genetic recessive, so in order for a child to have the condition, both parents would have to contribute their recessive gene. There’s a 25% chance that a child will have CF when both parents are carriers.”
And then I politely shut any and all questions about whether or not my hypothetical child would have CF. In my opinion, it’s not an appropriate topic to discuss until other conversations about reproduction are happening in the relationship. Unfortunately and fortunately, this is sometimes where my CF turns into a litmus test, and a relationship will end. I cannot and will not date any man who starts to stink of sexism or eugenics. I’m not saying that the desire to have a CF-free child makes somebody a eugenicist. There’s just a vibe that some men give off where I start to feel looked at like a breeding partner, or like a damaged egg on legs. I don’t know exactly how to put it into words, but, I am thankful to my CF for giving the opportunity to sense this vibe before things get too serious.
Of course, even when a person seems to handle all the information I offer well, there will continue to be moments where they come face to face with my life with CF, and they’ll have opportunities to react to my CF experience in real time. I have learned to offer my partners grace. If they seemed like they were prepared to handle the gross, scary, confusing, or otherwise bad parts of my CF, but then reveal in their knee-jerk reactions that maybe they weren’t prepared — I offer grace. I’ve had more than three decades of practice reacting to my CF, and they’re brand new to it. Humans, especially when they’re in a reactionary state, make mistakes. It takes practice to respond to situations calmly and thoughtfully. Intention to improve in the future counts. For me, those second chances become the next sets of litmus tests. I’ve written people off before things got serious due to these litmus tests, but I’ve never had a long term relationship end because of my CF, and I know I’m lucky in that way.
When and how have you disclosed your CF to a potential partner? Did you have a series of litmus tests? Are you in a long term relationship? Have you found true love? Join us on March 25th to discuss these things, and all things related to relationships and CF!