Sexuality As a Spoonie

Content Notion: This post discusses sexuality but there’s no mentions of explicit sexual activities.


A couple of days ago, I tweeted about that I feel like I don’t have a gender anymore, partly because I feel like the whole idea of gender doesn’t apply to me. It’s hard to describe exactly why, but here is a post about it that I wrote a while ago. Also,  I lack energy to do gender. The identity I express mostly consists of living with chronic illness and disabilities, having chronic pain and a bunch of very intrusive symptoms. This makes me confused sometimes but not being able to express any gender, and not feeling like I even have a gender, is most of the time not a problem.

When it comes to sexuality it’s different. Because even though my desire doesn’t fit into any obvious category, I have a clear sense of it. I know what it’s about, even though I sometimes lack words for it. But when it comes to actually having sex it’s very similar to gender – I lack the energy and there are a number of obstacles. My body doesn’t tolerate arousal, I feel bad about not being able to shower or wash myself as often as I want to, I’m in pain that gets worse from having sex and I have other symptoms that also gets worse from having sex. This is bothering me, because despite my condition, I miss having sex. I miss the experience, the sensations, the intimacy, and I miss it as a way of expressing myself.

Accepting that my conditions, disabilities and diseases are lifelong means that I can’t postpone dealing with this anymore. I feel guilty for still wanting to have sex and I’m confused about how to relate to this. It’s like I don’t understand it completely, and to be honest, in this post I’ve only mentioned a piece of all my messy thoughts about it. In order to wrap my head around this a bit better, I’m searching for books, essays and all kinds of written pieces about sexuality as chronically ill and/or disabled, but only stuff written by people experiencing it themselves. Do you have something to recommend? Please share in the comment section.


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