"I have a hard time being in my skin when my body feels like it’s on fire."
Oh baby, come here and grab me. You know chronic pain makes me feel so… rickety and broken.
When I think sexy, the first thing that comes to mind is acting with abandon and being lost in the trance of feeling and response. My body might want that rapture, but it has to crawl through its own junkyard to get there. My autoimmune carnival of achy joints (thanks, rheumatoid disease), achy muscles (I’m looking at you, fibromyalgia), and general shitty fatigue (Hashimoto’s Thyroiditis, plus the other two for the Trifecta of Blah) pulls me away from effortless joy and down toward the mattress. Oh that lovely mattress: wouldn’t you rather just take a nap, babe?
Even as I try to nap, my mind churns. I get mad at this body. I want to give up and run away from it or trade it in for another model. That level of conflict with one’s meat and potatoes is not good for self-esteem and body-love. I have a hard time being in my skin when my body feels like it’s on fire.
Chronic pain — especially when it comes from an invisible illness — is bound to create this confusing divide not only when you’re naked, but also pretty much 24/7. Even at work, when a friend tells me I look great, I know I scowl back at her in baffled shock: Me? Can’t you see this wasps’ nest? My body not only wants to cause me agony but is also a great liar who admits nothing.
I recently published a book of essays titled Pain Woman Takes Your Keys and Other Essays from a Nervous System, in which I flail searching for metaphors for pain: it’s like wearing a sieve as a hat, or an anvil of bees. No, wait — it’s a lava lamp, or maybe I’ve swallowed the Northern Lights. Basically, I gravitate toward any image besides being in a woman’s body.
To be honest, chronic pain didn’t start the problem with my body. Before I got sick, I would push my body hard, racing from work to soccer to activist meetings to a night of writing. I took advantage of its mobility, rarely stopped to rest, and didn’t know even then how to relax and enjoy this bag of Tinker Toys I call home. It was hard to enjoy being in a woman’s body, even when that body was healthy. Harassment and other challenges that come with the territory made me detach and wish I didn’t have one at all. So you could say that getting sick brought the conflict with my body to a head.
After I got sick, my body and brain were locked in constant battle, cueing up lots of rage and depression as a side order. Lying in bed feeling too awful to read or watch movies on my laptop, I began to listen — and to actually get curious about — what my screaming nerve endings might be trying to say. I could not will myself over this challenge, so my body had to win over my mind if I were to have even a few minutes of peace.
I had to lie there and listen to my body scream. And I discovered that once she started yelling, she didn’t want to stop.
My body is a cranky and capricious tyrant, but I have to treat her like a queen. She’s a diva in all the ways I never could be about my own physical or mental needs before I got sick. The Pain Diva gets to set the rules now, and she’s not one for negotiation. She’ll knock me flat if I don’t go easy. Realizing this has helped me come to a treaty or agreement with my body — and I will not call it “peace” or resolution. We’ll be a daily dance until we’re both done.
I have been commanded to do nice things for this rickety body, to listen to her now that she’s got a roar to her voice.
Strangely enough, the Queen Diva Body’s rules are making me finally aware of my body and helping me learn that a tiny bit of physical pleasure is a worthwhile investment. I don’t have the option of ignoring my body anymore, and I have to put my body first if I want to get anything else done. And that’s been a surprising shift of perspective.
I try to decrease my pain and find, to my surprise, that I am happier. Lying on the couch to relax feels good for both body and mind. Instead of throwing on a t-shirt and jeans every day, I aim for more softness. I gravitate toward either bright colors or full-on black, but the goal, either way, is what feels good that morning. When someone asks me how I’m doing, I often don’t have the energy to say “fine” when I’m not. I have no choice left but to listen to my body, and I’ll do anything to please and appease that diva, to make her feel happy for even a minute. I have been commanded to do nice things for this rickety body, to listen to her now that she’s got a roar to her voice.
Does that make me feel like I love her more, or that I appreciate my body and feel sexy or fantastic? My relationship status continues to be “it’s complicated,” but at least I am here in my body 24-7, living through my skin as well as my mind, absorbing and thinking about the signals from my body that I can no longer ignore. Having to take up space with my own body’s needs, even if that means walking with a cane or taking a short nap on the floor of my office, means my body comes first, and I think that’s been a very good lesson for my mind and my spirit.
If nothing else, I am happy to be a sick woman in public, taking up space as a reminder that bodies have needs.
I take this diva body to rallies and speak out about the need for better healthcare, for preserving Medicaid and the Affordable Care Act, because it’s not pain or sickness that brings enlightenment. Acknowledging and taking care of pain has brought me a bit of peace; it has shown me that opening my mouth to say what’s wrong or right for this diva body — what feels good, what doesn’t — is the sexiest thing of all.
