Chronic illness and desire

I’ll be honest–I’ve been thinking a lot about sex lately…what I want, how I wish it were easier to come by, and mostly how it’s been a long time. It feels like I have been waiting forever to find the kind of pleasure I’m looking for, but the truth is that illness has been my lover for far longer than I had hoped. I’ve spent the last four years navigating the waters of chronic illness in a way that has been new, unsettling, and very hard on my body image.
2013-12-16 14.01.46
That being said, I still manage to forget that this is my new reality.
I remember what my body felt like before I was ill–
I remember what it felt like to be without worry that my body would embarrass me–
I remember what it felt like to know that I was really sexy.

Even when I was first sick, I felt good in my body most of the time. I did not have the sense that my body was turning against me (though, writing that, I wonder who would I be without this magical body that works most of the time). I had a kind, compassionate lover then who did not focus on my symptoms, but didn’t ignore them either. At that point, I really believed that my illness was a temporary phenomenon…something that I’d get through and then be back to living my “normal” life. 2014-07-02 11.09.58This last recurrence, though, caused a shift in my perspective. I realized that my “normal” life would now involve lots of intervention from the allopathic medical system–that I would never be without this companion of illness. What does this have to do with sexiness, you ask? Well, it definitely changed my relationship with my body and my sense of myself as a desirable being. I still feel like the same person, but I am now even more complicated than before! I now have a long handbook for being comfortable in this body, and it sometimes feels like a lot to ask someone else to join in on. I don’t want to feel like a burden–I just want to feel joyful, light, happy and alive in this skin, flawed as it is.

2014-06-17 20.32.45I know that there are infinite ways to be sexy, and I know that there are millions of people who live with disease every day–many of them much more devastating than mine. It’s finally dawning on me that I am one of them, and that chronic illness has actually had a great impact on how I have related to others. It contributed to the decline of my last relationship, and it has made it harder for me to be out in the dating scene. I don’t think of myself as someone who lives with chronic illness until I begin talking with people who don’t, and then I get that there’s a difference. The thing is, I keep on going despite the loneliness, and I keep finding ways to live as a sex-positive person in a less than optimally functioning body.

I’m excited that there’s a new group of people mobilizing in Portland around creating sex-positive culture. MESH hosted an erotic reading last night that reminded me of the millions of ways bodies are turned on and gave me hope that my body will find plenty of pleasure in the years to come.

I want to thank my friend Susan for sharing her story about sex and intimacy after breast cancer because it inspired me to think about my own story differently. Read her post here:


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