This article originally appeared on VICE US.
Jessi was diagnosed with cystic fibrosis (CF), an incurable, degenerative genetic disorder, as an infant—like most people born with the condition. The disease notably affects the lungs, causing chronic infections and coughs, as well as often progressive difficulty breathing. It also affects the intestines, kidneys, liver, pancreas, and other organ systems, causing all sorts of problems ranging from trouble digesting food to stunted growth and development. (The exact symptoms vary from case to case, based on individual health factors, the age of one’s initial diagnosis, and the course of the disease.)
Jessi lived with many of those symptoms for decades. But it was only around the time she hit age 30, she said, that her CF started to interfere with her sex life. “I was getting sick a lot more,” she recalls, “having to go on antibiotics or into the hospital frequently—having longer periods of time where I just wasn’t feeling good. Obviously, if you’re not feeling good, you’re not feeling frisky.”
The fact that Jessi had an active sex life may surprise many people who are accustomed to thinking about those with CF as tragic, stunted, and thus asexual beings. Until the 1970s, the disease killed most people born with it before they reached adulthood. And those who did often lived with the visible side-effects of delayed puberty and physical development.
But recent medical advances—new treatments and strategies for diet, hormone, and lifestyle management—mean many people with cystic fibrosis avoid developmental delays and live well into their 30s or 40s. A new treatment breakthrough could limit the development of the disease in many individuals, helping them live longer still. And unsurprisingly, adults with cystic fibrosis have made it clear over the last few years that they feel as much sexual desire as anyone.
Sure, cystic fibrosis can pose a few complications to an individual’s sex life. Lung issues may mean that certain positions that put pressure on one’s chest can be painful or lead to trouble breathing. Some people dealing with a lack of breath may need to be on an oxygen machine, which can be hard to work around in bed. The antibiotics and steroids many people with cystic fibrosis take regularly can trigger irritating cases of fungal vaginitis. And bouts of illness and linked anxiety, depression, or fatigue can—as Jessi experienced—eat away at one’s energy levels and libido. Some people with cystic fibrosis also develop body image or self-esteem issues around visible signs of the disorder, like implanted ports used to deliver medications, surgery scars, or chronic bloating. Concerns about physiological deterioration or shortened lifespans can put strain on intimate relationships as well.
But effective treatment plans, physical therapy, the use of a bronchodilator half an hour before sex, and avoidance of triggering scents and positions can minimize physical hurdles for many people with CF. Strong support networks, mental health resources, and partner communication can help to manage most other barriers. Often fertility is more of a challenge for people with cystic fibrosis than sex itself, as the vast majority of cisgender men with the disorder have blocked or missing sperm ducts and many cis women have thickened cervical mucus that makes it harder for sperm to reach an egg. (Cystic fibrosis and treatments for it may also limit the forms of birth control that work for many cis women.)
A couple of recent studies seem to suggest that cultural tendencies to desexualize people with cystic fibrous pose more of a challenge to adults with the disorder trying to build active and satisfying sex lives than the disease itself. Some individuals with cystic fibrosis in these studies say their caretakers and educators failed to give them the same level of sex ed or support other kids got. Many have written about the challenges they face finding people in the dating pool who don’t freak out when they learn about the condition, or treat them with pity.
A number of cystic fibrosis organizations now offer detailed information on, and support open dialogue between people with the disorder about, how to navigate sex and intimacy while living with CF. These resources have helped many of the 30,000 people in the United States, and at least 70,000 people worldwide, living with cystic fibrosis immensely. To add to this dialogue, VICE recently spoke to Jessi and her partner Brent, whose last names have been withheld for privacy, about how they negotiate sex and intimacy.
Jessi: For the most part, I still had decent dating experiences, [even after my CF started affecting my sex life in my 30s]. But I’ve been dumped because guys started to learn more about cystic fibrosis, or I got sick for the first time in a relationship. They’d just realize it was too much for them—how serious it could be and how much was involved.
I’m extremely involved in the CF community. I talk about it a lot and it doesn’t bother me when people ask questions. It’s not a thing for me to hide. And I always advise people not to try to hide it—because you can’t. People notice if you go on a dinner date and have to take a fistful of pills.
So, I have this attitude of: If somebody can’t handle it, that’s not somebody I need in my life. I think I was just raised that way. You’re born with CF and most people are diagnosed very young—most of us have always known we have it. That’s not to say there aren’t self-conscious people in the CF community. But I think this is harder for people diagnosed with something later on in life because they’re not used to it. This is all I’ve ever known. So, it is what it is.
Brent: On her dating profile on Plenty of Fish, [the dating app we met on late last September,] she laid out that she has cystic fibrosis and has been periodically sick, and that this is something she was going to continue to deal with. I didn’t really have any thoughts about that, though.
Jessi: He actually messaged me first, so it couldn’t have been that scary to him.
Brent: I was an EMT and I was pre-nursing in college, so medical things don’t really phase me too much. And I’ve had friends who were sick in the past, so I don’t see it as something to run from. She’s not the first person I’ve known with a port [implant used for taking medications].
I’d heard of cystic fibrosis, but I’d never known anybody who had it. So, I learned most of what I know about it after I started talking to Jessi and looking things up on my own.
We’d been hanging out for three weeks when she started having an issue with her chest. She decided she wanted to go to the hospital and I drove her there. That’s the day we actually…
Jessi: We made our relationship official in the emergency room. That was the first time my CF had an effect on both of us… That it, I guess, kind of became more real for him.
Brent: She said, “Well, this is how my life goes. What do you think?”
If you like somebody, [I think] you deal with it.
Jessi: I was in the hospital for four days and it took me a little while to bounce back from the antibiotics and stuff after that. But I don’t think we ever had any conversations specifically about what my CF might mean for us. [After that,] he would ask me questions periodically, though.
Our conversations have been less about how things could get worse in the future [because] I’ve been on a new medication for about a year and a half. This stuff is a game changer for most of the people who take it, so… for the first time in my life, I realize it’s possible I might not get worse. I could be stable for many years, maybe even have a normal lifespan. They’re more conversations about [the way things are right now and], I don’t know what’s going to happen.
Brent: It is always something I’m thinking about when we’re being physically intimate. You know, with positioning—not putting too much weight on her. I wouldn’t say I treat her like she’s fragile, but I’m conscious. I’m a lot bigger than she is. So, I try not to put my weight down on her, especially on her chest. And I think, If I were in that position, would it affect my breathing? Would I be able to expand my diaphragm? I try to keep most of my weight on my hips or arms.
We never had conversations about what should be done with that. It was just the way I reacted.
Jessi: There are certain positions where it’s harder for me to breathe. There have been a couple of times when he was putting a little too much of his weight on me. But it’s not very often. And if I’m having trouble breathing, I can always tell him and we change things up. It’s fine.
I always tell him if I’m not feeling well, too, whether that’s because of CF stuff or, like, oh, I have a migraine today. He understands that when I’m not feeling good, I don’t want to have sex.
I’ve had sex while I was using oxygen before. You have to learn how to work with it, because it’s easy to get tangled in the tubing. Or it gets crushed and you end up not really getting any air. But on the new medication I hardly ever need oxygen anymore, so that hasn’t come up for us.
**Brent: [**As a partner,] you just have to be flexible, because things are always subject to change. This is always going to interfere with sex in some way. What matters is less that, and more how much you let it bother you.
Jessi: You just have to keep having conversations about it. You need open communication in your relationship to make things work. You need to let your partner know [how you’re feeling].
If it’s a new relationship, you start small. Say, "Hey, I have cystic fibrosis. It’s a genetic lung disease. So sometimes I don’t feel well." You can see how the conversation goes from there and down the road, get into how it affects you specifically, or more serious aspects of it.
Brent: We do well with that. And with having fun.