What Sex Is Like with Chronic Pain

Once, when my husband and I were first dating, we destroyed a bed: hours of fun left the sheets in tatters, with the mattress destined for the trash. Our sex life was, in a word, athletic. Then, a year and a half into our relationship, I got sick with rheumatoid arthritis, an incurable autoimmune disease that blinded me with frequent pain. I had to move gingerly, babying my knees, wrists, fingers, hips, shoulders, and feet. My energy plummeted. We tried sex on days when I felt good, but those days were rare.

We decided not to take this lying down. So one night we, uh, lay down, and discussed our personal sexpocalypse. "I'm not an immortal porn star," I said. "I'm diseased and exhausted." I was afraid; I felt horrendously exposed. And then he laughed. "You're the sexiest woman alive," he said, "even when you feel like crap."

We set about redefining parameters. Sometimes I'd have to stop halfway through sex because of the pain, and that was okay. Getting naked would count as "sex," even if all we did was talk. Touching his shoulder, his arm, his face, was a way to physically connect when nothing else was possible. When things were possible, we would adapt. To keep my joints comfortable, we put pillows under my butt and against my left hip—it looked like we were having sex in a pillow fort. And about that left hip: During a bad flare-up, I noticed that the skin there was extremely sensitive—in a good way. A gentle touch with his tongue became a delightful trick. Pain forced me to consider sex far more subtly than I ever had before.

Two years after that night of reckoning, my husband and I still talk about sex and how to make it work for us, and while what we learn in these chats is useful when we're getting it on, the very act of chatting has made us closer. Ours was a conversation of necessity. But the rewards have been astounding: a sex life that works and a partnership that gets better and better.