Osteogenesis imperfecta (OI) is a genetic disorder that interferes with the body’s ability to make collagen, a component of bone, cartilage, muscle, skin, tendons, and other tissues that lends them a degree of flexibility, and thus plays a major role in their strength and resilience.
Researchers have identified over a dozen types of OI, each linked to a distinct genetic cause and profile of common effects, which collectively affect about 1 in every 20,000 people. Individual experiences with the condition vary so wildly that the symptoms of even two close family members with the same type of OI might differ drastically in nature and severity. But most cases of OI ultimately have major effects on people’s lives—including their sex lives.
People sometimes refer to OI as “brittle bone disease,” since one of the condition’s most common and visible effects is softening bones, making them easier to break or fracture, and sometimes leading them to gradually bend and warp. People with relatively mild cases of OI may only break a few bones over their lives—perhaps none after reaching puberty. But people with more severe cases may break their bones hundreds of times, sometimes as easily as by falling out of a chair. Concerns about bone strength lead many people with OI to be careful about sexual acts and positions that put too much pressure on them. Some avoid activities and poses they deem too risky entirely.
The condition also often causes short stature, joint issues, muscle weakness, and skin sensitivity, all of which can make some sex positions uncomfortable or impractical to get into or hold. It can lead to respiratory and heart issues and fatigue, which may affect their sexual stamina. And as people age, OI can cause hearing and vision issues, as well, which can affect experiences of and communication during sex.
Stigmas about physical differences and over-concern about the risk of breaks can lead others to infantilize people with OI, treating them more gingerly than they may want to be treated or writing them off as potential sexual partners. These ableist attitudes can complicate the process of finding a sexual partner in some cases, or trigger or fuel self-perception and self-esteem issues that can at times interfere with people’s ability to feel sexual or to get into sex in the moment.
Although there is no cure for OI, effective treatment, a healthy lifestyle, and self-knowledge and intuitive adjustments often make the condition entirely manageable. However, people with OI say they often have trouble finding support, even from medical professionals, in figuring out how to approach sex specifically—in part because there’s not a lot of research on the subject yet, and in part because of widespread discomfort even among doctors around talking about sex.
In recent years, people with OI have started to share accounts of their own experiences with sex in order to push back on this silence and stigma. However, these accounts are still few and far between. To help address this gap in dialogue, VICE reached out to Michelle Fynan, a mental health counselor and sexologist with OI, and her husband Chris to talk about how they approach sex.
This interview has been edited for length and clarity.
Michelle: I was the first person in my family with OI. It was the result of a spontaneous genetic mutation. My parents didn’t know that I had the condition until I broke my second bone when I was about two years old. Often, in mild cases of OI like mine where there’s no severe bowing of long bones or clear sign of short stature early on, people see breaks like I had and assume they’re a result of child abuse. So, my family was lucky that they found a doctor who was familiar with OI and was able to diagnose me quickly and accurately.
I’ve had about 30 breaks over the course of my life, only counting long bones. I don’t even count fingers, toes, and ribs. I also had several major surgeries while I was growing up to address the effects of my OI—like spinal fusion to address my scoliosis. I was recovering from breaks and procedures so often that I used a wheelchair until high school. I’ve also had trouble with my ligaments, pulled muscles, hypermobility in my joints. My hearing is a little affected now. And because of my scoliosis, I have a shorter than average torso and can’t fully fill my lungs—which has caused a lot of stress during the COVID-19 pandemic.
As a kid, I was always enamored with the idea of finding a partner. I’d flirt with a wall. But I believed my disability might get in the way of my ability to have that. Society in general doesn’t portray people with disabilities as sexual beings with relationships. And having a rare disease—not knowing other people while I was growing up who looked like me or were in my same situation—added to that. I felt like sex and relationships might work for these people with this other disability over here, but I didn’t really fit in with them. I also worried about the possibility of getting hurt—breaking a bone or pulling a muscle—during sex. And I didn’t have anyone in my life who also had OI and experience with sex who I could talk to about those fears.
As I got older, I started going to OI Foundation conferences to connect with others with my condition, and I saw people with partners and kids, which meant that at least some of them must be having sex. That helped. But when it comes to dealing with fear, I’ve always had an avoidant personality. I probably stayed in a wheelchair longer than I needed to in my childhood, for example, because you can’t fall down if you’re not standing up, right? So, I avoided any type of physical intimacy I thought might put me at risk of a break—including sex—until I met Chris.
“I avoided any type of physical intimacy I thought might put me at risk of a break—including sex—until I met Chris.”
Chris: We met in our 20s, through an online dating site, so we’d spent a while chatting and had a strong conversation-based connection before OI came up for the first time. Michelle mentioned that she’d spent some time in a wheelchair growing up, so we started to talk about that.
Michelle: I didn’t tell people about my OI from the start because it almost felt like I had to hook people first with my personality, then I could show them this more vulnerable layer of who I am. I also used it as a kind of test to see who’d get scared and run away, or who’d stay.
Chris: Like most people, I didn’t know much about OI before I met Michelle. Everything I did know probably came from Samuel L. Jackson’s character in Unbreakable, Mr. Glass, unfortunately. It took me a while to realize how inaccurate that portrayal of OI was.
I was already invested in our connection, so I was ready to just see where things went. I was a little hesitant to research the condition on my own before we met in person, though—which was probably a good choice, because I might have ended up psyching myself out. So, I didn’t know enough to consider what Michelle’s OI might mean for sex. Everything remained abstract until we met in person, which we decided to do pretty soon after she told me about her condition.
When I finally saw the difference in size between us in real life, that’s when I started thinking a bit about how physical intimacy might work for us. Because I’m a big guy. I’m 6’6 tall and 300 pounds. And Michelle is very short—about two feet shorter than me. But I wasn’t too concerned about that. I’m not sure if we talked about how that, or anything else to do with OI, might affect sex before we got physical, even though we talked all the time.
Michelle: I didn’t address what my OI might mean for sex because of my issues at that point of my life with avoidance. I figured that if I pretended it wasn’t going to be an issue, then maybe it wouldn’t be. I hadn’t sustained any injuries for a while by the time we met, which is typical for many people with OI; it stabilizes for a while after your childhood and adolescence.
So, when we started having sex, we didn’t hold back.
Chris: Yeah, I think we were having sex how most other people in their 20s have sex. I did have that underlying concern about my size, though. So, from the start, I tried to be conscious about putting too much pressure on her. But I try to be conscious of my size in any situation.
Michelle: But one day, still early on in our relationship, just a little too much of his weight was on me during sex. And I ended up breaking a rib. Honestly, Chris’s awareness of his own size and stature is probably the only reason that didn’t happen much sooner in our sex life. I chose not to tell Chris and stop the sex when that happened because I didn’t want to break the moment, and endorphins are great pain relievers. I figured, ‘This is fine. I won’t feel this until later.’
Chris: I think you held back from telling me about things like this early in our relationship in part because there wasn’t full trust between us yet.
Michelle: Yeah, I’d agree with that.
But breaking that rib threw disability back into my face. It forced me to acknowledge that there might be some limitations on what I can do during sex, and to come to terms with that. Going into the [academic] study of sex, with a focus on how to manage sex when disability is present, helped me with that. For one thing, it kept my own condition in my face. I also did research while I was in school on creative positioning adjustments to accommodate various physical disabilities.
Chris: And I think that, as soon as she felt that we’d established full trust, the flood gates opened in terms of Michelle telling me whenever there might be an issue during sex. Michelle is a great communicator. So, I’ve never worried about anything in sex causing an issue, because we trust in our ability to talk about and respond to anything related to OI, or anything else, in the moment.
“I’ve never worried about anything in sex causing an issue, because we trust in our ability to talk about and respond to anything related to OI, or anything else, in the moment.”
It almost seemed like, when she started talking more openly about her life with OI, her libido went through the roof, actually. Like there was a sort of freedom in opening up about it.
Michelle: Right, because I was no longer putting on a performance as if there were no issues. I was showing up as my authentic self. Instead of hindering my sex life, as I’d always feared open acknowledgement would, facing my disability enhanced my presence in and pleasure from sex.
I don’t think we ever sat down to have a specific conversation about how to deal with the potential effects of my OI during sex. We’ve just made intuitive adjustments to positions as we’ve gone along, either to avoid injuries or to accommodate injuries I might have sustained in other parts of my life. A big part of sex—and life—with a disability is just feeling your way around to what works. We just feel into it during sex, and guide each other in the moment.
Chris: I don’t enjoy sex unless Michelle’s enjoying it too. If something’s not going to work for her, it’s not going to work for me. So, I’m happy to go with the flow in feeling things out.
Michelle: For anyone with bone fragility, adjustments usually involve finding ways to keep your partner’s full weight off of you, or at least being mindful of how much pressure is on you.
Chris: One of the big adjustments for us was paying attention to how different positions affected Michelle’s back. Her spine is fused with rods, so arching or bending it too much can be difficult.
We also have conversations about things in everyday life, like injuries Michelle’s sustained and how to avoid them in the future or deal with them in the moment, that we internalize into general awareness during sex. For example, she’s told me not to pick her up in everyday life.
Michelle: Because you’re too high up!
Chris: So I know not to do that in sex either. I also know how tight I can hold her, in general.
“I go through a process of trying to chart what positions cause me pain or discomfort, or if it’s worth it because sex will help me reduce any pain I already feel.”
Michelle: If I’m dealing with an injury, sometimes I go through a process of trying to chart what positions cause me pain or discomfort, and figuring out if that pain puts me in a place of not wanting to have sex, or if it’s worth it because sex will help me reduce any pain I already feel. If I’m on medication for pain, I also try to be aware of how that medication might be affecting my ability to feel and receive pleasure, and to account for that in whatever way seems appropriate. Luckily—knock on wood—I don’t have too many issues with pain and discomfort to deal with.
Chris: Michelle definitely deals with some pain, though.
Michelle: Right. If I think about it, I can often feel pain. But I’ve learned to deal with it.
Chris: Generally, I try to put Michelle in ultimate control to set the pace and limits during sex.
Michelle: I do have to be very conscious during sex. But in my experience, that can enhance the intimacy and pleasure of the moment. I look at heightened physical awareness as a sexual perk.
Chris: I think the only big issue we’ve faced in our sex life in recent years was pregnancy.
Michelle: Yeah, the first time I got pregnant an ultrasound showed that our daughter had a femur fracture in utero—despite me being so ridiculously cautious that I would drive to work on the less bumpy road to avoid jostling. So, we knew that she had OI, and we were concerned that hers might be more severe than mine. I also know how excruciating the pain of a broken femur is. So, because the prospect of having any kind of pleasure while she was going through that and we couldn’t do anything to help didn’t feel appealing in the least, and because we were concerned about how any type of activity might affect her, we decided not to have sex while I was pregnant.
Chris: We did have conversations about that choice. We just turned that part of our brains off.
Michelle: During my pregnancy with our second child, we didn’t see fractures in the ultrasounds. But we decided not to have sex for the duration again because we were still worried.
Chris: But after each pregnancy, I think we got back to sex about as fast as any new parents. Well, we did have some added concerns around the fact that Michelle was breastfeeding, and we knew that was going to leach calcium which might make her more susceptible to injuries. But that just meant that we had to be a little more cautious during sex to be safe for a little while.
Michelle: I can foresee my OI imposing more limitations on our sex life as I get older.
Chris: Yeah, as time goes by we’ve become more aware of the increasing risks associated with the gradual decrease in Michelle’s bone density. We have to acknowledge—and this goes for most people—that we were probably at our strongest, physically speaking, in our 20s. And maybe because of that, we’ll end up having another incident with a rib break someday.
Michelle: This version of Michelle would tell Chris about it as soon as that happened, though.
Chris: But for now, in and out of sex, we mostly think of ourselves as a normal couple.
Michelle: Right. Although, what is normal anyway? Normal is just a setting on a washing machine. [Laughs.]