Q&A: Sex After a Cancer Diagnosis
Tips that apply to many kinds of health challenges
Emily was recently interviewed by Molly at Popsugar for a piece on sex after the subject received a breast cancer diagnosis. You can read the full piece here.
Below are Emily’s full answers to their questions – great thoughts for anyone in a relationship going through health or other kinds of challenges.
You have popularized the idea of the sexual response system being like a car, with an accelerator and brakes. With a breast cancer diagnosis, there are so many new ways the brakes can be pumped, both with physical and mental hurdles to overcome. How would you suggest untangling and identifying what, exactly, the brakes are with your partner?
There are lots of ways to explore what activates each person’s accelerator and what hits their brakes. An easy place to start is to think about a time when you had pretty great sex and consider what factors made it great, and think of a time when you struggled with pleasure, arousal, desire, or orgasm and consider what factors were in the way.
If that feels daunting, sometimes people find it easier to write general lists of things they expect other people might find activate their accelerators or hit their brakes, and then seeing if any of those feel personally relevant.
With a cancer diagnosis, some of the new things that hit the brakes will be obvious (like pain and fear and side effects) and some may be less obvious (like the ways the diagnosis and treatment affect your identity and your understanding of your relationship). Common factors that hit the brakes are stress, body image, trauma history, relationship difficulties (especially not feeling connected and lack of trust), distraction, and straight up exhaustion. Often there will be factors related to: (1.) physical and mental wellbeing, (2.) partner characteristics, (3.) relationship characteristics, (4.) setting, such as at home, on vacation, online, etc, (5.) other life circumstances, such as family, work, money, etc, and (6.) “ludic factors,” which include the actual sexual play you engage in.
There are lots of worksheets about this process in the Come As You Are Workbook, especially chapters 2 and 3.
How can you prioritize finding an accelerator sexually when the stakes at play are so high?
The stakes around treatment certainly may be high, but the stakes around sex are not. I’m going to say that again: there is nothing at stake, when it comes to your sexual connection. Anyone who says differently is, as the saying goes, probably selling something. You could decide to take all sex entirely off the table until you’re five years cancer-free, and that’s a legitimate choice. If your partner wants sex, ask each other these important questions: What is it that you want, when you want sex with each other? And what is it that you don’t want, when you don’t want sex with each other? And, perhaps most importantly, what kind of sex is worth having—as in, what makes sex worth not spending that time watching “Parks & Recreation”? (Some people may find it easier to write down their answers first, before they have the conversation.) There’s more about this in chapter 1 of Come Together.
Despite the cultural messages that suggest we can somehow “fail” as sexual people if we don’t perform according to some external, bullshit standard, the reality is there is nothing to lose, there is no way to fail. We only imagine we’re doing it “wrong” when we compare our experiences to some bogus cultural script of what sex “should” be like – a script that was always irrelevant to our lives, but after a cancer diagnosis is just an absurd, pointless, and even cruel standard against which to assess our sexual connections. There is nothing at stake with sex; you have nothing to lose, only pleasure and connection to gain.
Sex can be pleasure, connection, joy, escape, play, potential for healing and many other things, but it does not ever have to be high stakes.
Seek pleasure where you can find it, because pleasure is good for you, and don’t worry when pleasure is elusive, because pleasure is not the easy, obvious experience we’ve been told it is.
In your new book, you dug into the science of what great sex looks like in a long-term relationship and how to cope when problems arise — a breast cancer diagnosis certainly is a big problem and may change what the 'long-term" will look like in various ways. How might partners think more long-term about sustaining sexual intimacy after a diagnosis like this? For example, I spoke to someone who had a mastectomy and hysterectomy due to her cancer, and is now post-menopausal in her mid-30s and finding less pleasure in sex. How might you talk to a survivor about the long game of sex in this situation?
Chapter 7 of Come Together, “Living in Bodies,” addresses chronic illness and disability, whether lifelong or temporary. The ultra-short answer: curiosity. Turn toward what’s happening right now with calm, warm, curiosity, gently exploring whatever is true right now, without judgment or urgency. There’s no need to spend time or energy—both so limited and precious—trying to make sex match your expectations of what it “should” be. There’s certainly no benefit to beating yourself up or getting impatient with yourself or a partner just because your sexual connection has changed. Change happens. Explore what’s true now with calm, warm curiosity, together.
I don’t say this dismissively or lightly; change is hard and cancer is really hard. I thought explicitly about how life-altering, life-threatening, and life-ending situations affect long-term relationship for Come Together, because while I was writing the book, I lost a friend to cancer. She had married her wife just a couple months after I married my husband, and they had already reached their “til death do us part.” When that happened, I needed the book to recognize that none of us is promised abundant time with the people we love; we are only promised change. The ways people navigate change together characterizes the quality of the connection. And (because of brain science reasons I explain in chapters 3 and 8 and throughout the book) curiosity is the way to navigate change that maximizes our opportunity to share pleasure.
I’ll also add that I really love Better Sex Through Mindfulness by Lori Brotto, who has specialized in developing sexual health interventions for women with cancer and survivors of cancer, as well as survivors of sexual trauma.
What should people know generally about overcoming physical barriers to pleasurable sex, especially after breast cancer surgery, chemo and possible more invasive surgeries like mastectomies or hysterectomies, depending on how the cancer has spread?
Honestly, physical barriers are often the simplest to overcome, because they’re the most obvious barriers. Props, pillows, pain management, and lube, lube, lube. Check out The Ultimate Guide to Sex and Disability and The Bump’n Book of Love, Lust, and Disability. The more stubborn obstacle people face is all the feelings they have about the fact that they require these accommodations. Like, I just recommended two books with the word “disability” in the title, framing cancer as a disability, even if it’s a temporary one. People have feelings about that. When people wish things could be the way they were, the props and pillows can actually hit their brakes because the props and pillows are symbols of the change they’ve experienced. The real key is to recognize that feelings of grief, loss, frustration, etc will probably co-exist alongside the pleasure you explore. That’s okay. The pleasure is worth exploring, even when you experience this kind of ambivalence.
How does the "pleasure vs. desire" metric you’ve discussed come into this conversation about having sex with cancer or after cancer?
It’s even more important when people are dealing with illness or disability. The standard narrative of effortless desire and pleasure becomes utterly obsolete, a barrier to pleasure rather than a pathway to pleasure—and, as I say as often as I can, anytime I get the chance, pleasure is the only measure of sexual wellbeing. It’s not about how much you crave sex, it’s certainly not how often you do it; it’s whether or not you like the sex you are having. If everyone involved enjoys whatever you do, then whatever you’re doing is right. Only ever do sexual things you like, and now more than ever, don’t waste time or energy feeling bad about not doing sexual things you don’t like.
How can partners dealing with breast cancer talk through emotional hurdles? Both partners might have different feelings, whether it’s a caregiver who's worried about hurting their partner or who's feeling less attraction towards them — or the survivor feeling self-conscious or less confident about their new body post-breast-cancer-surgery/mastectomy?
The same way partners talk through emotional hurdles around anything else in their relationship: with kindness, compassion, mutual admiration, and trust. You say the things out loud, just like you say them in the question. “I feel self-conscious about my body.” “I’m worried about hurting you physically.”
These conversations can be difficult, for at least two common reasons: First, we don’t want to disclose something about ourselves and have our partner react with shock and horror. Second, we don’t want to hurt our partner’s feelings. The goal of talking about this stuff is to move closer to each other, to make collaboration easier, but it’s all too easy to fear that you might push each other further apart. On top of that, a lot of us were taught that if you have to talk about sex, there’s a problem—which is false, but a lot of us carry that stigma around. If you weren’t already having great, loving, supportive, curious conversations about sex before cancer, now is not the time for trial-and-error. Instead, you might find it helpful to talk with a sex therapist, who can guide you in how to have these conversations, so that you’re well equipped to talk to each other without accidentally hurting each other along the way.
I want to add, too, that yes, occasionally a partner is “less attracted” to the body of a partner who has survived cancer because of the physical changes, but in my experience it’s much more common for that not to be true! In a great relationship, we’re attracted to the human being we chose to be with, not to the body parts of that human. It’s normal to have feelings about changes to our bodies and our partners’ bodies, of course, but a strong relationship adapts to those changes with love and trust.
-Emily
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Stay safe and see you next time.
