There’s Really Only One Way We Can Have Sex Now. My Husband Refuses.
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Dear How to Do It,
I’ve been with my husband for 23 years, and generally, things have been great. While our libidos haven’t always been in sync—for much of our marriage, I’ve had the higher sex drive—we’ve made it work up until 18 months ago. That was when we made a discovery that has transformed our lives.
I recently discovered I have Ehlers-Danlos syndrome (EDS) when I started having serious back problems. I struggle to walk, let alone have sex, and because pretty much every body movement involves the back in some way, we’ve not been able to successfully have sex since.
Short of my lying completely still and him penetrating my mouth, which he doesn’t want to do, I don’t know how to manage this situation and get back to some kind of sex life. He is always saying that he would be happy just to pleasure me, but I’ve never been able to just lie back and selfishly take it without reciprocating, and so doing it that way potentially means physical pain and yet more frustration, because for me, there is nothing less sexy than pain.
In the meantime, he continues to tell me how much he still wants me. I just feel so guilty and pressured to be able to perform again. I really want to find a way that allows both of us to participate, rather than just the passive approach. But he’s also not always good at understanding I have good and bad days, so I might be up for trying one day but not the next. He’s so desperate for signs of healing that this is also really hard to navigate emotionally. It feels like I’m not trying hard enough. Everything is difficult while we both come to terms with my disability and its impact on so much of our lives.
I would gladly cope with some pain, but when he sees me in pain, he loses his erection. I love my husband. I want to have sex with him. I’m just not sure I know how to deal with this new set of physical and emotional constraints. Help!
There’s a lot of emotional turmoil in your letter, which makes sense given that you’re getting used to a chronic health issue. Both the degree of symptoms that caused the diagnosis, and the diagnosis itself, are a lot for you and your husband to adjust to. I reached out to Allyson Byers, who is a licensed marriage and family therapist with specializations in both chronic illness and relationship challenges, for some insight. (Editor’s note: Byers is a therapist at the same practice I coach through.) Here’s what Byers had to share:
For some folks with chronic illnesses, like EDS, it requires getting creative. Are there other ways you can connect and spice things up that expand on the definition of sex and intimacy? I like to recommend the three-minute game. This can help improve communication and allow you and your husband to explore what types of touch feel good for you. I know it’s hard to have to redefine sex. But we can remember that this doesn’t mean it has to be this way forever. Maybe one day, your pain will shift, and you’ll be able to have sex the way you used to. But that’s not the case right now. Practicing radical acceptance can help. We unnecessarily suffer when we deny our reality. Radically accepting this doesn’t mean you or your husband are okay with it. Your feelings are still real and valid. But you’re saying, “At this point in time, we can’t have sex like we used to. It may change in the future, but that’s not our reality right now. So how can we be physically intimate?”With chronic health issues, it can feel like the disease is one with you. And it is in a lot of ways. It impacts every facet of your life in some way. But your disability is not you. It’s a part of you. You can externalize it in a way that allows you and your partner to express how you feel about it. For example, your husband might say, “I am really angry at your EDS today because it makes things, including sex, unpredictable.” I imagine you feel similarly. This gives you both a way to talk about an EDS in a way that doesn’t shame you. Some people even name their chronic illnesses. This also gives you a way to connect and bond. You both are frustrated by the EDS. It makes it feel less like you are at odds with one another. A lot of my clients find it helpful to come up with a list of activities (this can be related to sex and intimacy or relate to date ideas or anything else) for high pain days, medium pain days, and low pain days. For example, on a high-pain day, maybe you’ll engage in mutual masturbation or cuddle under a (weighted) blanket. Maybe on a medium or low-pain day, you’ll explore the different erogenous zones, focusing on areas that aren’t particularly painful, or you’ll engage in fantasy roleplays that utilize your body in a way that feels okay. This makes it easier to still find ways to connect, no matter what your pain is. I’m not sure if this resonates with you, but people who don’t have chronic illness can’t understand what it’s like to be in pain 24/7. Sometimes I’ll be out with a friend, and they will notice I appear to be in pain. They’ll ask if I’m okay and if I want to go home. When I say no, the vibe instantly shifts. They feel bad and encourage me to go home and rest. This sounds similar to the reaction your husband has (losing his erection) when he notices you’re in pain. It’s been helpful to communicate to the people in my life that I do pretty much everything while I’m in pain. If I only waited to engage in life when I’m not in pain, I would never participate. I let people know that I am choosing to engage in this activity with them and that I am so happy to be here, even if I’m in pain. I tell them that I will let them know if the pain becomes too much or if I’m not able to do the thing. I wonder if talking with your husband about this might help. As you said, you will gladly cope with some pain. You will let him know if the pain becomes too much, and you need to stop. You can let him know that he has good intentions of trying to take care of you, but the best he can do is respect your decision of when you want to engage in sex. This might not magically change things right away, but over time, he will hopefully learn to trust that you’ll communicate with him on any changes. I would also encourage you to explore using props and mobility aids and having an aftercare plan that includes ways to support your body’s pain.
For some folks with chronic illnesses, like EDS, it requires getting creative. Are there other ways you can connect and spice things up that expand on the definition of sex and intimacy? I like to recommend the three-minute game. This can help improve communication and allow you and your husband to explore what types of touch feel good for you. I know it’s hard to have to redefine sex. But we can remember that this doesn’t mean it has to be this way forever. Maybe one day, your pain will shift, and you’ll be able to have sex the way you used to. But that’s not the case right now. Practicing radical acceptance can help. We unnecessarily suffer when we deny our reality. Radically accepting this doesn’t mean you or your husband are okay with it. Your feelings are still real and valid. But you’re saying, “At this point in time, we can’t have sex like we used to. It may change in the future, but that’s not our reality right now. So how can we be physically intimate?”
With chronic health issues, it can feel like the disease is one with you. And it is in a lot of ways. It impacts every facet of your life in some way. But your disability is not you. It’s a part of you. You can externalize it in a way that allows you and your partner to express how you feel about it. For example, your husband might say, “I am really angry at your EDS today because it makes things, including sex, unpredictable.” I imagine you feel similarly. This gives you both a way to talk about an EDS in a way that doesn’t shame you. Some people even name their chronic illnesses. This also gives you a way to connect and bond. You both are frustrated by the EDS. It makes it feel less like you are at odds with one another.
A lot of my clients find it helpful to come up with a list of activities (this can be related to sex and intimacy or relate to date ideas or anything else) for high pain days, medium pain days, and low pain days. For example, on a high-pain day, maybe you’ll engage in mutual masturbation or cuddle under a (weighted) blanket. Maybe on a medium or low-pain day, you’ll explore the different erogenous zones, focusing on areas that aren’t particularly painful, or you’ll engage in fantasy roleplays that utilize your body in a way that feels okay. This makes it easier to still find ways to connect, no matter what your pain is.
I’m not sure if this resonates with you, but people who don’t have chronic illness can’t understand what it’s like to be in pain 24/7. Sometimes I’ll be out with a friend, and they will notice I appear to be in pain. They’ll ask if I’m okay and if I want to go home. When I say no, the vibe instantly shifts. They feel bad and encourage me to go home and rest. This sounds similar to the reaction your husband has (losing his erection) when he notices you’re in pain. It’s been helpful to communicate to the people in my life that I do pretty much everything while I’m in pain. If I only waited to engage in life when I’m not in pain, I would never participate. I let people know that I am choosing to engage in this activity with them and that I am so happy to be here, even if I’m in pain. I tell them that I will let them know if the pain becomes too much or if I’m not able to do the thing. I wonder if talking with your husband about this might help. As you said, you will gladly cope with some pain. You will let him know if the pain becomes too much, and you need to stop. You can let him know that he has good intentions of trying to take care of you, but the best he can do is respect your decision of when you want to engage in sex. This might not magically change things right away, but over time, he will hopefully learn to trust that you’ll communicate with him on any changes.
I would also encourage you to explore using props and mobility aids and having an aftercare plan that includes ways to support your body’s pain.
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Dear How to Do It,
I’m a 30-something cis bisexual woman. I’m still a virgin, partially because no one has ever really expressed an interest in me sexually or romantically (which makes even masturbation extremely difficult for me). I know I’d like to have sex someday, and potentially be in a long-term relationship—possibly with kids, which I worry I’m running out of time to have. Should I take the leap and try dating sites or some kind of sexting? Start going out to clubs? And should I approach women in a different way than men? I know I’m attracted to women and nonbinary people, but I don’t know how to signal that I’m queer.
—Running Out of Time
Dear Running Out of Time,
I have so many questions. How are your social skills in general? What do your friends have to say about your situation? Do they have any insight into times when you might have missed signs that someone was signaling their interest? Or do they agree that no one has ever expressed interest in you, and possibly have thoughts on why? When you ask whether you should take the leap and then describe most of the main ways people tend to put themselves out there, does that mean that you’ve never done so? If that’s the case, what’s been preventing you from making yourself available in these ways? (Also, are there instant sexting pen-pal matching services out there and I’ve never heard of them?)
Sometimes we develop narratives in our heads about ourselves that cause us to overly focus on moments that support that story and stop us from noticing opportunities to interrupt it. I’m guessing between the lines here, but perhaps you came to the conclusion that people aren’t interested in you, and then minimized or dismissed overtures because you assumed they weren’t and couldn’t see signs of interest.
Given your age, I’m also wondering whether the pick-up artist era might have impacted you. I know several women—including women who are very much in line with mainstream beauty standards—who spent some period of time feeling awful about their personalities, looks, or both because the majority of dudes who had the courage to approach them were pick-up artists and led with what’s been coined “negging.” It was a strange and awful time. You’d be living your life, rarely being approached, if at all, and then most of those approaches would start with a purposeful insult. So if you’re thinking back to the late 2000s and remembering a slew of dudes looming over you at coffee shops saying things like, “I bet you think you’re interesting” or, “You could be pretty if you wore makeup,” that was probably a twisted expression of interest. For the record, I don’t necessarily think this is what Neil Strauss intended his book, The Game: Penetrating the Secret Society of Pickup Artists, to cause, and you’re almost certainly better off for having avoided any of those particular advances, but the whole situation felt worth mentioning in case it rang true for you.
Meanwhile, lots of folks are afraid of rejection. Rejection is uncomfortable. Some mental health practitioners describe it as a form of trauma. I’ve seen in friends, clients, and this column, the ways that rejection, or, in cases like yours, lack of overtures, can cause significant distress. So keep that in mind when you’re wondering why people aren’t approaching you—a lot of times that’s more to do with their own fear than any judgement of you—and consider how you can handle being rejected yourself when you start approaching people. Who can you lean on when you’re feeling low? How can you keep your expectations in a reasonable range when you’re saying hello or telling someone you’d like to get to know them better?
Whatever the gender identity of the person you’re approaching, talk to them as the complex human they are. And when it comes to the concept of signaling that you’re queer, yes, you could display some rainbow insignia or hang out in queer spaces and wait for people to come to you. Or you could let individuals that you find attractive know that you feel that way—by telling them so directly, or asking them whether they’d be open to going on a date—and signal that you’re specifically interested in them.
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Dear How to Do It,
My wife gets urinary tract infections (UTIs) very easily, no matter how many precautions we take when it comes to sex. As you can imagine, this wreaks havoc on our romantic life. Is there anything we can do to reduce her risk?
There’s not much detail here to work with, so I’m going to assume that you both have already tried some UTI prevention 101 like washing your own genitals and hands thoroughly before sex, your wife urinating directly after sex, and eliminating any possibility of contamination from engaging with her anus or yours during sex. This means it’s time to get proactive, find a medical professional who is willing to go into detective mode, and reconsider the actual mechanics of how you’re engaging with your wife’s body.
When it comes to advocating for more in-depth care, your wife is going to need to lead the effort in conversations with medical professionals. She should succinctly make the point that this issue has been ongoing and recurring, and be clear about your degree of willingness to pay for tests that insurance might not want to cover. If the doctor won’t take her seriously, look for a new one—this is an area where you can support her by helping with that search.
Some additional facts to know as you both seek out medical professionals: UTIs can be caused by factors that have nothing to do with sexual activity, and the symptoms associated with it can also have a lot of overlap with other conditions, like bacterial vaginosis, some of which are not usually included in the standard testing panels you and your wife have probably had at some point in your lives. (You don’t mention your sex, but if you’ve got a penis, you and your wife are having sex without condoms, and her issue is bacterial vaginosis, instead of just UTIs, there’s also evidence that resolving recurrent bacterial vaginosis infections in women often requires treating their male partners.) If, at any point, either of you are tempted to try unregulated supplements, please don’t.
While your wife is pursuing medical care, you can start taking note of what kinds of sexual activity tend to set off the UTI symptoms. Once you have an idea of what’s high risk and what’s low risk, the two of you might need to rethink what sex looks like for the time being. A good place to start is talking about what sex means to each of you and why it’s important to you, and then focusing on activities that provide those feelings but are on the low or no-risk list. You might also use the data about what does and doesn’t cause an issue to start considering possibilities for ways of interacting that the two of you haven’t tried yet.
More Advice From Slate
I was 25 when I married my wife. I’m 44 now. She’s 47. We have two children together, and a grown stepson whose father is in prison. Both our dating and engaged relationships were full of shared activities and physical touching. We did everything together from cooking to fishing, playing cards, walking, riding back roads, having sex, and socializing with friends. She never told me “no” when intimate desires scratched me. Never. Not once. Our relationship changed immediately the day after our wedding.