My experience dating with an invisible disability

Upon developing a chronic pain disorder, some people would mourn a lost future of recreational sports, mountain-climbing, or marathon-running. But when my doctor told me, shortly before my 27th birthday, that the bone-deep all-over aches I'd felt for four years were from "depression or possibly fibromyalgia," it was my dating life that worried me. How could I navigate the hectic world of hookups and romance while wracked with pain so strange that even my doctors don't fully understand it?

How could I navigate the hectic world of hookups and romance while wracked with pain so strange that even my doctors don't fully understand it?

For a while, I simply forged ahead as if nothing had changed. When an OKCupid suitor unexpectedly led me up onto his rooftop patio for a smoke, I tried to ignore the white-hot pain shooting through my knees and ankles as I climbed the narrow stairs. I hid my anguished limp, fearing he wouldn't think I was sexy anymore if he knew my body creaked and ached.

Another time, while cuddling with a new beau on his sofa, I swung one leg over his lap so I could straddle and kiss him, as I'd done countless times before with countless other paramours – but as I got into position, my hip popped loudly and I doubled over in pain.

"Are you OK?!" he asked.

"Yeah," I replied, trying to sound breezy. "Not very flexible. Need to do more yoga, I guess." The embarrassment of my body sabotaging my bold move made it hard to enjoy the subsequent kisses, good though they were.

Why did the idea of disclosing my condition scare me so much? Maybe I feared rejection. Maybe I worried my body couldn't live up to new partners' expectations, sexually or otherwise. Maybe I still wasn't even ready to admit to myself that my quality of life had dipped, probably permanently, and there was nothing I could do about it. It's hard to feel confident in the dating world when you don't feel comfortable in your own body.

As stress is one of my pain triggers, high-pressure situations like first dates can easily bring on flare-ups. I've had to cancel or postpone more than I would prefer, due to pain radiating through my body and the accompanying onslaught of depressive thoughts: "Am I so broken that I don't deserve love? Who would ever love someone with this many limitations?"

Am I so broken that I don't deserve love? Who would ever love someone with this many limitations?

The answer, as it turns out, is…many people. But it took me a while to learn that. CBC's You Can't Ask That shines a spotlight on Canadians with different disabilities responding honestly to the inappropriate or uncomfortable questions they hear all the time. In the recent second season, several people who live with mental illness commiserated about how terrifying it can be to disclose their condition to new dates, because of the very real chance they'll be rejected. I felt that fear too, but eventually pushed through it, deciding that if someone had a problem with my pain, then I had a problem with them.

One of the first romantic partners I told about my chronic pain was an affable, bearded man I'd met online who shared my kinky fondness for rope bondage. When I worried aloud during one date that my body's inflexibility was an obstacle for him, he looked surprised. "Tying you up is fun," he explained. "It's an interesting challenge to find ways to do it that feel okay for you." Suddenly I saw my condition through new eyes, and realized that rather than being a hurdle, it could actually give partners an extra route through which to express their affection.

Disability justice advocate Mia Mingus coined the term "access intimacy": a particular type of intimacy you feel with a person who understands your accessibility needs. I feel this now with my current partner, Matt, who I met two years after my diagnosis, by which time I had gotten more comfortable mentioning matter-of-factly on dates, "I have a chronic pain condition." Matt (who is nonbinary and uses they/them pronouns) brings me my heating pad when I need it, reminds me to support my achy knees with pillows in bed, and gives me massages when the pain overwhelms me. They love me just as much when I'm bedridden with pain as when I'm limber enough to go on adventures. I'm so glad I found someone who loves me the way I deserve – and I know gaining confidence in disclosing is part of what allowed this to happen. I only wish everyone with an invisible disability could be as lucky as I have been.