Queen of Pain: How My Marriage Survived My Illness

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Early on in our relationship, my now-husband Tom admitted that for him, sex wasn’t a huge priority. This caught me off-guard, not just because we slept together pretty quickly after we started dating and then continued to do so quite frequently. It was because the sex was good— enthusiastic, adventurous, and on one occasion, athletic enough to break a kitchen table.

So we had an awkward conversation in which Tom explained that he had never put much of a premium on sex in his previous relationships and, while he enjoyed having sex, he didn’t feel a need to have it that often. “Is this because you were raised Catholic?” I asked suspiciously. “That probably doesn’t help,” he agreed ruefully. I sighed and contemplated ending things, but he was a great boyfriend in every other way. And honestly, I was curious about what dating a guy for whom sex wasn’t the highest priority would be like.

A decade later, sex isn’t the highest priority for either of us. But it’s not because we’ve been together for so long, or because we’re now the parents of a toddler. It’s because I have chronic pain, and that’s a bigger libido killer than a small child or years of monogamy could ever dream of being.

I was born with compressed nerves under my eyes and in the back of my head, which caused constant headaches and facial pain. In my late teens, severe pain spontaneously developed in my right wrist. In my early thirties, I began to get muscle spasms in my shoulders and neck. Treatments have varied from medications to injections, to physical therapy to surgery, and while some approaches have succeeded, overall my body’s a mess.

Which means that Tom and I are in a permanent threesome: him, my pain, and me. And the pain doesn’t like to wait its turn. So even when Tom and I do have sex, it’s impossible to fully surrender to the action and sensations. Instead, a part of my brain is always monitoring my pain: okay being on top is great but oh, crap, can’t put any weight on my right hand … this is better except the way his chin is hitting the top of my head is probably going to cause spasms so let’s shift a little to the left … good lord will these pain meds ever kick in? Think about sex think about sex think about sex … and so on and so forth. And while I keep these thoughts to myself, my facial expressions or involuntary intakes of breath often give me away — and I have it on good authority that nothing wilts an erection faster than your husband realizing that in the race between him and the pain, the pain’s already come a dozen times over.

Our threesome continues out of the bedroom, infiltrating every aspect of our romantic lives. Sure, sometimes we’re sharing a shower just because it’s fun, but more often it’s because I need help washing my hair. And even though the water and shampoo bubbles and naked skin are the same in either scenario, it’s hard to think wow I’m sexy and desirable and he’s so turned on right now! when I can’t even clean myself without help.

Which sounds awfully depressing, and sometimes it is. But it would be a lie to say that there are no upsides for either of us. “The silver lining of your pain,” Tom remarked to me a while ago, “was that we got into a deeper relationship than you necessarily see people getting into before they get engaged to each other. Because we had to, or else we wouldn’t have been able to stand each other.”

And it’s true that we talked a lot. Before we’d officially agreed to spend our lives together we’d discussed such lighthearted subjects as: what if my health got really bad and I couldn’t work? Could we afford to stay in the city we loved on only one salary? What about kids — did we want them, and what if pregnancy made my conditions worse? And then there was the largest, most nebulous concern that hung over all our other concerns, compromises, and decisions: pain had been my longest-term relationship, but Tom was still adjusting to its role in his life. What if he decided one day that it was just too much trouble?

“I definitely recall conversations playing out with myself in my own head, where I’m like, if you left her that wouldn’t mean she wasn’t suffering,” Tom told me. “Or I’d think to myself, I hate to watch her suffer. But, if I wasn’t watching her, that wouldn’t affect the amount of suffering she’s in. The suffering is still real. I’ve weighed it out, and I’ve thought, well if this is the worst thing about the relationship, that’s not so bad. I can deal because there’s so much that makes it worthwhile.”

Which leads to another silver lining: that some of my favorite times with Tom came about thanks to pain. Slow-dancing in the waiting room before my first surgery; hearing Tom croon “Get Low” ballad-style to make me laugh when I’m in too much pain to eat; surprising him with his first-ever foot job. Even our trip to the Cleveland Clinic so I could see another specialist is on that list: how we spent the night before in the hotel room making fun of Dancing with the Stars and the morning before my appointment killing time in the world’s tiniest art gallery. Our shared history, our inside jokes and conversational shorthand, the very fabric of what connects us as a couple and a family, is woven through with, and strengthened by, chronic pain.

These silver linings are important for both of us to remember, and to talk about — we really are all talk and no action most of the time. And that’s something we talk about, too, because over the years Tom’s realized that sex is actually more important to him than he thought in that long-ago conversation. And I’ll admit that the first few times he initiated and I demurred, a tiny part of me felt a tad victorious. Hah! Now you know what it feels like to want something and not get it! We’re even!

Petty and immature? Oh, definitely, and soon enough I grew up and just admitted that while my mind and libido were willing, my flesh was too weak. When we have sex now it feels like a victory and I’d like to say that that’s another silver lining — don’t take anything for granted, especially fucking — but, well, you know what my interior sex monologue sounds like, how impossible it is to ever really escape the reality of my body. Sex will never be a simple release, as easy as breathing and as necessary as water. It will always be a visceral reminder of what I have lost, what I never really had, and what Tom has lost, too. But it’s also a tangible way for us to tell each other, for once without talking, that we are still here, that we are still together.