We were right there. Panting, sweating, moaning. So damn close when…
Pain flooded my body as reality set in: my hip had popped out of place. And I was on top. Almost a year later, doctors diagnosed me with ankylosing spondylitis (AS), a form of arthritis that primarily affects the hips and pelvis. At the time of this could-have-been-ruined moment, I had no clue. But the experience perfectly captures the changes, frustration, and ludicrousness that chronic illness has introduced to my sex life – and why sex is more important than ever to my relationship.
In addition to AS, I also have Crohn’s disease. Most people aren’t that familiar with either. Plus they’re pretty invisible – you couldn’t look at me and know. To give you an idea of the impacts these diseases have on my relationship, since getting diagnosed with both earlier this year, my beau has seen me through two colonoscopies (and thus two colonoscopy preps – which if you’ve had one you know is the worst), 5 MRIs (and the accompanying back spasms, pain, and tears), dozens urine tests, stool samples and blood draws, a super restricted diet (no meat, dairy, sugar, caffeine, or spicy foods and low fiber), hours of self trigger point & myofascial release (and crying because holy shit it hurts), an eating disorder relapse, several new medication regimens and all their side effects, over 50 doctor’s appointments (I hit a record in June with 24), hundreds of days dealing with crippling pain, toxic smelling gas, and a myriad of other make-me-feel-less-than-sexy-symptoms.
My partner has helped me get dressed more often than I’m willing to admit, checked my bum for hemorrhoids (there was a flashlight involved and it was awkward AF), cooked dinner (and did the dishes) after working 12+ hour days, and held me together while I fell apart… again.
So while we’re still partners and lovers, there’s also a new dynamic in our relationship: that of caretaker and patient. Making space for this hasn’t been easy. Thankfully, as a sex educator, I have access to the information, tools and support that helped us navigate somewhat seamlessly.
love sex? Redefining sex as more than penis-in-vagina
As a result of all these physical and relationship changes, sex has become a brand new adventure. Spontaneity has lessened. In it’s place are questions like “Will my hip pop out (again)?” or “How gassy am I? Does it smell? How badly?” or “How fatigued am I?”
The answers determine what sex acts we do and in what positions. As you can probably guess, there are a lot of obstacles to intercourse! All “the other stuff” — cuddling, sensation play, handjobs, oral sex, mutual masturbation, and self-pleasure — has become increasingly important. They don’t take as long if my fatigue is high, they give me more control over what happens and it’s easier to make a quick exit.
If this sounds like a lot of work, it is! Living with a chronic illness is hard, and that applies to your sex life as well. Despite what many people think, all this planning doesn’t take away from the sexiness. For us, it builds anticipation and pleasure. Getting so sick this year forced us to not only accept it but learn to enjoy it. Plus, we appreciate the spontaneous moments so much more now even as we grieve their loss.
Other aspects of our relationship have changed too. Everyday intimacy — touching as often as possible, warm hellos and goodbyes, spending quality time together, deeper conversations about life, emotions, current events, feminism, sustainability, you name it — all happen more frequently now. We can’t be sexual as frequently or in the ways we want, so we’ve found others ways keep our connection and passion strong.
Pleasure is healing
Being sick, with all of it’s life changes and obstacles, has made #freedominpleasure more important than ever. Physiologically, pleasure reduces my stress, decreases my pain and calms my guts. Mentally and emotionally, it offers an escape from the challenges of my new normal. Relationship-wise, it helps keep us connected on all levels, from laughing together at Seinfeld reruns to exploring each other’s bodies in detail to discovering new restaurants, bars, free events, and more.
In those moments of pleasure I’m not worried or even thinking about anything but what I feel. Yes it can be interrupted by a joint misbehaving, a fart sneaking out or whatever else weird thing my body decides to do. But for some blissful minutes or hours, it’s just my body giving me the ultimate gifts of pleasure, presence and escape. And in the grand scheme of things, these will be what keep me sane, grounded and help me navigate the many tough times ahead.