Hemophilia is an umbrella term for several lifelong conditions, each of which causes a deficiency in one of the 13 “clotting factors” in our blood. While this might sound like a good thing to people who only know about blood clots as major health risks, it’s a serious health problem. Low levels of even one factor make it hard for our bodies to form the healthy clots that stop bleeding—both from noticeable wounds and the tiny, often invisible injuries we often sustain simply by moving through life. At least 30,000 Americans live with some form of hemophilia—and that number is likely a serious undercount.
People often assume that those with hemophilia bleed especially hard and fast—that even a paper cut could be a death sentence for them. But that’s a load of sensationalist crap. They often just bleed more easily and longer than others. However, hemophilia can still majorly affect people’s lives—including their sex lives.
An impact that wouldn’t leave a mark for most can leave someone with hemophilia swollen and bruised. Some also get “spontaneous bleeds.” The frequency and severity of hemophilia bleeds vary with factors like overall health and how controlled the condition is. (We can’t cure it, but proper medication and support can often mitigate hemophilia’s effects.) Still, any bad internal bleeds near something like the brain risk serious damage without prompt treatment. Even people with well-managed hemophilia can still experience regular internal bleeds, often around major joints, which can gradually do long-term damage.
Sex involves sensitive tissue and erogenous zones that are ideally aroused and full of blood. So inevitably, people with hemophilia occasionally come out of intense encounters with some bruises or might get a bleed in their wrists, hips, or groins following some particularly forceful, repetitive motion. The more vigorous the sex, and the more sensitive or unlubricated the tissue involved, the greater the risk of a bleed—which is why many experts specifically warn people with hemophilia to be careful with rough and anal sex.
But direct injuries aren’t the main or most common issues people claim hemophilia causes in their sex lives. More often, people say that joint pain especially can make it hard to get into or hold certain positions. Or that the discomfort of bleeds and bruises sometimes makes it hard to feel sexual or have sex. Anxieties about the risk of a bleed can also lead people to shy away from rough sex or kink or to experience a decrease in their sex drive.
Hemophilia support communities have developed materials to help folks navigate sex, like this detailed breakdown of numerous potential psychological and physical effects and how to deal with them. But personal accounts of the process of managing sex alongside hemophilia are still rare.
To address this gap, VICE spoke to Patrick James Lynch, a filmmaker and prominent hemophilia advocate born with the condition, and his wife, Natalie. They spoke about the role hemophilia has played in their sex life and how they’ve responded to the issues it’s posed.
This interview has been edited for length and clarity.
Patrick: I received great care for hemophilia in my childhood, but I did develop an immune response that meant I couldn’t take the standard medication for my severe hemophilia for seven years. I experienced a lot of bleeds, primarily into my ankles and my right elbow. When I was 13, I overcame that issue through immune tolerance therapy, so I could take the best-in-class medication again, and I got a procedure done to reduce bleeds in my ankles and elbow. But even though my hemophilia has been fairly well managed since then, it’s always affected my sex life—mainly in that I’ve never felt safe within my body. I’ve internalized this sense that there are things I constantly need to be on the lookout for.
Because of my religious upbringing and education, I only started feeling comfortable being sexual once I was in college, mostly when I’d go out to parties and have something to drink. While out, I’d inevitably have an elbow bump or a fall I wouldn’t remember then wake up with bruises and think, Oh, I need to be careful. And while I’d flirt with people and we’d go back to their place or mine, when it came time to have sex, I’d be standoffish—which was probably frustrating for those people. But I didn’t feel safe.
When I did have sex, I’d be hyper-aware of stiffness in my ankles, which affected my ability to do certain positions. (I don’t have a lot of knee issues, but they come out in some positions, too.) But more than the limitation itself, my awareness of that would impact my ability to feel fully present during sex because I’d make a bigger deal out of it in my head than it probably actually was for my partners and end up feeling very insecure. Even with long-term partners I had before Natalie and I got together, I never reached a point where I felt fully sexually comfortable with them—where I didn’t have this inner dialogue about all the ways in which my body betrays me, and the ways in which I can’t trust my own body. Don’t let yourself be vulnerable. Don’t make yourself exposed. It took my relationship with Natalie for me to start overcoming that.
Natalie: Before I met Patrick, I’d actually attended a hemophilia fundraiser with a friend, but I didn’t look into what the condition was. I just knew, OK, this is a chronic condition that has to do with blood. Health and bodies are an interest of mine, so I probably knew more than the average person, like that bleeding disorders don’t mean you’re going to die from a little cut. But I didn’t start learning the details until we started dating. Hemophilia came up on our first date. We got incredibly emotionally intimate and Patrick shared how he lost his brother to the condition. Within five hours of meeting him I knew he was living with a condition that’d taken his brother.
Patrick: My brother died in 2007, and we met in 2015. The work I’d been doing in those years was in large part a response to his death. Also, many of my friends came from camps for people with chronic illnesses. So, I was always quick to open up about this stuff. I’d have had to really think hard about how to have a first date where I didn’t talk about hemophilia right away. Also, while I’m doing quite well, there are still times where, after sitting down for dinner for two hours, I get up and you’ll notice it takes me a few seconds to get a joint working, so there’s a piece of me that’s always trying to get ahead of that by acknowledging my condition. In retrospect, it probably cost me some second dates. But it led me to where I think I’m meant to be.
Natalie: I didn’t ask a ton of detailed questions right away like, “How often do you bleed?” The impacts of hemophilia just revealed themselves to me on a daily basis, as we started dating and I watched him treat and manage the condition—get bleeds and prevent bleeds. I asked questions whenever things came up. It’s hard for me to isolate the effects hemophilia had on our sex life early on, but the biggest issue was that Patrick used sexual relief to relieve his sometimes really debilitating chronic pain. So, if he’d been in a lot of pain and used masturbation for relief before we saw each other, then he might be unable to be sexual with me.
“A few years ago, I would have tried to engage, not been able, and gone into a cycle of insecurity.”
Patrick: At some point in my life, I realized, Oh, one thing that helps me stop writhing in pain in bed is masturbation. So what if I sometimes need to do it multiple times in a day for days in a row? It makes my pain go away and it’s not hurting anyone. But I didn’t put the pieces together in the early days of our relationship to see what that meant for my relationship with Natalie. I also didn’t have the communication skills to share what I was experiencing at the time.
Natalie: We both traveled a lot for work, so whenever we saw each other, I would think, It’s been over a week, so of course we’re going to have sex tonight. Then Patrick would have performance issues because he’d masturbated multiple times a day for days beforehand, and I’d feel like, I’m super sexy and super willing. This is a new relationship. How is he not down for this? It hit my ego a bit, just feeling rejected.
Patrick: Then my inability to perform would put me in my head, and I’d start feeling lesser.
Natalie: For the first time in my life, I started to feel anxiety around sexual encounters.
Patrick: We’ve been saying “the beginning of our relationship,” but these were issues for years.
Natalie: Improving our communication has been key. From the second year of our relationship on, we’ve seen a couple’s therapist at least monthly, which has given us an arena to talk about uncomfortable things, and professional help in learning how to become better communicators. Then there’s also the natural comfort that develops when you’re in a relationship for a long time.
Patrick: Over the course of our relationship, I’ve gotten more comfortable talking about my pain and discomfort, which I never used to do. Like, there are times when Natalie’s on the edge of the bed during sex and I’m standing and my ankles feel frozen and I’m getting uncomfortable. In the past, because we were building to something, I wouldn’t want to change positions, so I’d push through it. Now, I’m less concerned about interrupting the flow and more comfortable just bringing it up and changing positions. Or recently, we were in bed and Natalie made a move, and I said, “My body’s all kinds of screwed up right now, so I don’t think I can have sex.” A few years ago, I would have tried to engage, not been able, and gone into a cycle of insecurity.
Natalie: I don’t think I’ve ever caused Patrick to have a bleed through sex, and I’ve never felt the need to be gentle with him. But I don’t want to make him feel bad physically, so if I’m aware that he’s in pain and pushing through something, I might forgo my own pleasure to avoid that.
Patrick: In the seven years that we’ve been together, I have gotten physically healthier overall. I have had moments where I’ve realized I can squat in an interesting position that wouldn’t have been an option for me a couple of years ago. My body’s probably in as good a place as it’s ever been. But the truth is I have kept exploring things like rough or kinky sex off the table.
We’ve gotten into a routine of, Here’s the sexual moment—let’s cycle through the five positions that we do with some slight variations on those. It’s satisfying for us. But if I sit with the why of our lack of sexual exploration, it’s absolutely at least partially about the fear that my body wouldn’t be able to stand it. I’ve internalized a sense that safety for me means avoiding things that I don’t really need to avoid, including sexual experimentation. And I feel secure and comfortable in our sexual relationship. Straying from that, while exciting, brings up anxious feelings for me—my sense of I’m not capable. I have to overcome that.
As we’re talking about this now, I’m realizing we haven’t sat down to talk about new things we might want to try in our sex life. Maybe we should, because I don’t want to miss the boat.
Natalie: The young-ish, healthy-ish sexual boat?
Natalie: Right, because as Patrick says, he’s gotten healthier overall and there are fewer bleeds or days of intense pain than there used to be, but we have to acknowledge the reality that as we age that won’t always be the case.
Actually, we did recently watch How to Build A Sex Room and that started a conversation for us about what we’re interested in that we haven’t explored. But Patrick withdrew from that pretty quickly. I’d still love to have that conversation!
Patrick: We can try watching a few more episodes to see if it gives us a starting point to make it easier for me to talk about new sexual things. We can just keep trying to have the conversation.
“As we’re talking about this now, I’m realizing we haven’t sat down to talk about new things we might want to try in our sex life. Maybe we should, because I don’t want to miss the boat.”
Natalie: Now that I think about it, the few times we have gone out of our comfort zone in sex, I’m the one who’s gotten injured. [Laughs] Like when we tried to use handcuffs but we had to cut them off and I had prominent welts on my wrists for weeks. Or when Patrick’s tooth got caught on my lip and it just started squirting blood.
Patrick: Yeah, shit, OK. [Laughs] So maybe we should stick to our norm for your health.
Natalie: No, I’m open to it!
In general, I don’t know how present a person can be in sex, or how much pleasure they can receive, when their body doesn’t feel like a safe place. I’ve watched Patrick’s level of comfort in his body shift over the course of our relationship, as we’ve learned to communicate. My wish is that one day he will be able to view his body as a safe, pleasure-giving space.
Patrick: Natalie has the healthy sense of entitlement that all humans ought to have to sex and pleasure. I just don’t have that. From a young age, it was instilled in me that things could have been much worse for me and I was lucky to be born when I was, where I was, to have a great mom who was also a nurse and to have access to this great clinic. I have this sense of, I’m hurting, but I should just be grateful for what I have that plays into my struggle to develop a healthy sense of sexuality. But those aren’t mutually exclusive things. I can be grateful for what I have, but also strive for more in my sex life.