We live with our bodies all our lives, and only we know what certain sensations feel like. No one knows our own bodies better than we do. Here’s what I learned about mine as I battled a serious illness.
Back in the summer of 2016 I believed I had pulled a muscle in my chest. But the soreness wouldn’t go away. Eventually, the area that was sore grew a lump: I knew I had to get it checked out. I learned that the lump was breast cancer. I was 25.
In January 2017, after fertility treatments to freeze my eggs, I started chemotherapy. The side effects of chemotherapy can be never-ending. It’s almost impossible to tell exactly what you’re going to experience. This body you once knew so well is thrown into complete chaos. Some of the side effects I didn’t expect: losing taste, my fingernails becoming very sensitive, and vaginal penetration becoming painful because of hormone changes. Most days when I was in treatment, I was too sick to want to do anything, but there would be a few days a month when I felt well enough to get out of the house and be a real person. I would even want to have sex with Elan, my then-boyfriend, now my husband. Prior to my cancer diagnosis, Elan and I had a great sex life. Now, when sex was painful, life became even more frustrating. I wanted to feel that prior connection and closeness with my partner, but my body wouldn’t let me.
Cancer has a way of dehumanizing you and making you feel like you have no control. Whenever we had to stop having sex because I was in pain I felt like the cancer was winning. We needed to figure out a way to find intimacy and pleasure without penetration. Our answer may surprise you, but stay with me. For us, the answer was BDSM.
BDSM stands for bondage and discipline; dominance and submission, or sadomasochism. Let me start by saying that BDSM is not what you read about or saw in Fifty Shades of Grey. It’s an alternative sexuality practiced by consenting adults with a foundation of trust and communication, and it does not always involve sex. The Wikipedia definition of “kink”—which is one way of referring to this practice—goes like this:
“In human sexuality, kinkiness is the use of non-conventional sexual practices, concepts, or fantasies. The term derives from the idea of a ‘bend’ in one’s sexual behavior, to contrast such behavior with ‘straight’ or ‘vanilla’ sexual mores and proclivities.”
Even before my diagnosis and treatment, one of our favorite types of play was impact play: hitting with an object—a hand, flogger, paddle, cane, or something else. Our relationship to pain was positive. Since cancer, I’ve learned that there is a big difference between kink pain and medical pain. Kink pain was pain I agreed to. I could control the type of pain, where I would feel it, and when it would stop, using negotiations and safe words to instruct my partner. With medical pain, I had no say over what I was subjected to.
Because I often experienced negative sensations during treatment, Elan and I changed our form of play. Kink can actually involve the mind more than the body. In fact, it became clear, you don’t really need your body at all—a good trick for when you’re trying to navigate an ever-changing physical state. Mental kinks can involve role-playing, serving or being served, humiliation and degradation, or hypnosis—just to name a few varieties. It takes a good deal of negotiation to know what you can and can’t say to your partner, and for us conversations that led up to these scenes helped to foster our relationship. What’s important to know about kink is that it means 100% consent 100% of the time. Kink is not one sided; it is something everyone involved in the scene consents to. It is not about the dominant partner telling
the submissive one what to do with no consideration for them. Everything has to be egalitarian for it to work.
Some of the mental play we tried was subtle: a firm, dominant command to go lie down when I wanted to help around the house, but wasn’t able to, a “good girl” when I voiced my limits, even an “I’m proud of you” when I did something challenging. When it came to physical play where I was in the role of the submissive, we abandoned impact for a while and focused on sensations. It’s amazing what a blindfold and various objects can accomplish: when you don’t know what’s soft or prickly or smooth you’re focused on trying to figure it out, not on the fact that you have to go to another infusion in three days. It creates a kind of forced meditation.
Cancer has deep emotional challenges, too. During my treatment, I felt both angry that Elan couldn’t do everything in our lives (for example, errands and household chores) and guilty that I couldn’t do anything to help. Playing the role of a dominatrix was a great way for me to be able to express these emotions in a controlled way. Of course, my psychotherapy was very helpful, but there’s something about being able to use one’s body that talking can’t always live up to, like the difference between strategizing for a game and actually playing the sport.
I was very lucky that I was declared N.E.D. (No Evidence of Disease) after six months, but what people don’t always realize is that cancer is chronic, even when you can’t detect it. The chemotherapy stayed in my system for six months after my last infusion. I had three surgeries within a year. I did a second round of fertility treatments to freeze embryos before getting my fallopian tubes removed prophylactically to help prevent ovarian cancer. I was navigating all of this while trying to get back to a normal life. I also had to continue taking an antibody, Herceptin, until I had reached a year of infusions. Each day, I woke up to my changed physical landscape: giant scars on my body and a numbness in my left breast and the back of my left arm, where lymph nodes had been removed during my mastectomy.
At certain times after my treatment ended, I didn’t care about sex or play. I had other things to worry about. I was fine with not wanting sex. It really didn’t bother me. Then, Elan wanted to have a conversation about feeling disconnected. He missed physically bonding with me the way I had missed feeling physically connected to him while I was going through treatment. We discovered that we had different “love languages” or ways of expressing and wanting to be loved. Mine was acts of service while his was physical touch. He told me that we didn’t need to have sex; that wasn’t the point, but that he would even be happy just making out or cuddling naked. That was a need I could understand and work with.
Trying to figure out “normal” life again was one of only several reasons for my decreased libido. I realized this body that I once knew so well and had grown to love now looked and felt very different. Therapy helped me get through the trauma of cancer and feel more comfortable in my body again. I realized I wasn’t getting turned on because our sexual energy had shifted. Elan had seen me in so much medical pain for so long that he didn’t want to contribute to my pain. This self-proclaimed sadist in our play was now nervous and intimidated by what we had once loved. Attempting intimacy with a partner only to feel like they’re always unsure can be a mood killer.
We realized it was time for us to dive back more fully into our old life. I wanted to reconnect with positive pain to try to forget the negative pain, so we went back to the basics of BDSM : “How much does this hurt on a scale of one to 10?” Scenes with a time limit. And asking/giving as detailed consent as possible. These acts helped him to feel comfortable inflicting pain on me after a year of seeing me in pain he couldn’t control.
I started to talk about BDSM and the onset of a chronic physical illness. I presented at the AltSex Conference in New York last April, and taught classes on the subject with various kink organizations. The more I talked with those in the audience or participants in my classes the more I realized that many people with illnesses and disabilities barely have access to sex education in general, let alone alternative sex education. In actuality, people with disabilities express their sexuality in ways that are as diverse as everyone else’s. People with different abilities should have access to information on how they can make accommodations to enjoy themselves during sexual activity.
It can be challenging for doctors to address these topics because they are, rightfully, more focused on saving a person’s life or on general healthcare. In fact, my incredible oncologist never asked me about my relationship or my sex life. When she asked about symptoms I told her about the pain during intercourse, and she gave me some recommendations. But because she was around my mother’s age I was reluctant to talk to her about BDSM . My infusion nurse was around my age, so I felt more comfortable asking her about which practices were okay and which weren’t during treatment. She was eager to answer the questions, and once even asked me, “Am I about to learn something?” I feel lucky that I grew comfortable talking to my healthcare providers about sex and various sexual activities— including BDSM —but some patients are not as open, and some doctors are not as accepting.
I’m reminded all the time that cancer is a chronic illness. Every six months I still go through three scans, three doctor appointments, and multiple blood tests. Last March I had to have a breast biopsy because of a suspicious finding on an MRI . Luckily, it was just scar tissue from a previous surgery. Eventually, I will need to remove my right breast and my ovaries because of my BRCA 1 gene mutation. When that happens, my husband and I will continue to adapt to whatever situation comes our way: we tell one another “We get through everything.”
My body will change if we decide to get pregnant, and it will change again when I go through premature menopause after I get my ovaries out to eliminate the possibility of ovarian cancer. As that happens, the options our sex life gives us should help keep us close and further develop our relationship.
Whatever this future holds, we know that cancer did not mean the end of our sex life. In a way, it started a new beginning.
Ali Walensky is a 28-year-old teacher and activist. She feels it’s important to share her story in order to help people feel less isolated.