Embracing Sensuality While Sick
I've had a few people ask me, "how do you find confidence and sexiness when you are struggling with disease flares?" It's a valid question, considering I feel like I'm 97-years-old half the time, so...yeah, it can be damn hard.
The issue is that society puts people into boxes. Sexy vs. unsexy. Sick vs. healthy. And we often think of the chronically ill as lacking in several areas, including our sensuality. Society often tells us that we are broken or different or other, so we start to believe it too. Because disability is so intimately tied into the body, we start to believe that our bodies are somehow less than or different, and therefore our sexuality or sensuality or desirability is somehow less than or different. We need to reframe the conversation and stop reducing exotifying and othering disability!
AS is not all of me
One of the most important things I've done for myself since being diagnosed is delineating between my disease and my "AS life" (my writing, my discussions about it, this community, and my moderation work) and the rest of my life (where I'm just a normal girl, a writer, a New Yorker, a dancer, a lover). Obviously, the two are connected, but I don't let AS take over my identity. It's a part of me. One part of me. This lets me feel sexy and confident and good.
When I first was diagnosed I thought, "I've become a 'sick person,'" and this ate away at my self-identity. I also dealt with some weight gain and a voracious need for more sleep. These were difficult hurdles but I got past it for the most part.
But reminding myself that AS doesn't just get to steal parts of me is key. It's easier said than done; I had to meditate on this idea for a while.
I am sexy regardless of disability (and maybe even because of it!)
You are still sexy even when you're not performing sexuality or sensuality.
Obviously, it’s OK to feel down in the dumps and to lean into periods of rest. No one should feel forced to inhabit some image or identity society expects of them. Women are especially expected to be desirable at all times — and that's just not realistic when you're napping on the couch in your pajamas because you've been in horrible pain for weeks.
Your body isn't inherently unsexy.
Desire, sexuality, sexual expression, and beauty is a spectrum and is different for literally every single human being — and disability or being differently-abled doesn’t inherently make your body any less sexy or sexual. You are still capable of receiving pleasure and providing pleasure!
Tapping into sensuality
I honor my sensuality — it is a part of me that melds with my writing and even my flirty personality — and I refuse to let AS make me feel less beautiful or desirable. In order to keep that part of myself alive and roaring, I take the time to get in touch with my body outside of the bedroom. That means I dance to sensual music, or I take long, luxurious baths I honor my skin and my shape.
I put on sexy music and do yoga. Or I simply brush my hair and do a facial to tap into my beauty. I think the most important thing that I can do to maintain my sense of sexual confidence is to be in touch with myself and my feelings through journaling, movement, and engaging in pleasurable experiences.
Having fatigue or being stiff or having pain doesn’t mean that you have to say goodbye to pleasure and receiving love and giving it.
Does reading AxSpA patient stories help you in your journey?