The Truth About Sex and Chronic Pain

Sex is not a topic I’ve ever been super comfortable talking about.

I’ve gotten way more open about it the last couple of years, but not publicly. I save these conversations for drives with my sister, or random texts to my best friends.

Talking about it on a public platform where anyone can tune in? I’ve always been a hard pass.

Until now.

Before I came out of the proverbial closet, or was even able to acknowledge my queerness, I didn’t join in when my friends would relay details about their sexcapades because I wasn’t having any. Or, I was having very few. My friends seemed to really get the whole “sex” thing. Like, they really enjoyed it, found it fun and had loads of stories to share.

I didn’t have any of that.

Sex always freaked me out.

I took an oath of celibacy as a teen. You know the whole, “I’m going to wait until I’m married,” thing. I even had a purity ring (if you don’t know, Google it. If you do know, how’d that work out for you?). But it was all a front.

I didn’t care about people having sex before they were married. Hell, when I told my parents of my decision my mom’s response was, “But… what if you don’t get married until you’re like, 40?” My response was probably an eye roll and an “as if.” But, clearly my desire to wait wasn’t being influenced at home.

Sex for me has been complicated for a variety of reasons. There’s been a lot of layers to sift through in this arena.

Was sex not great because I prefer women to men? That would make sense. But, I’m not repulsed by the idea of sex with men. At least, not the men I’ve had sex with (minus the abusive one, but that’s a story for another day). But I also have little to no interest in ever doing it again, because now I know what it’s like to have sex with a woman, and holy shit, I get it now.

All the things I thought sex was “supposed” to be, or “could” be, it all started to make sense once I started sleeping with women. But as it turns out, who I was having sex with wasn’t the whole challenge.

I always had this feeling I’d be really good at sex.

This was a mostly unsubstantiated feeling because with almost all my partners, I wasn’t ever comfortable enough to get out of my own head. I had a deep desire to be able to let loose, have fun, laugh and try new things, but my partners didn’t seem to reciprocate.

A male partner and I even went to Half Priced Books once and picked up some Tantra books and something called “The Sex Bible” if memory serves. I was amped, and he seemed to be too. Guess how many times those books got used? Maybe once, and not for my lack of trying.

I didn’t get it. Was I not desirable? Was I actually really bad at sex and no one had the heart to tell me? Why couldn’t I seem to connect?

It took me until this year to articulate the real problem.

Yes, I was a closeted lesbian. Also yes, I had some questionable male partners. But what I failed to take into consideration were the years of chronic pain I’d been dealing with since the age of 13.

When you’ve been dealing with intense amounts of pain for so long, you kind of get used to it. It becomes a part of you. And because you’re used to it, you don’t realize that the reason you’re “used to it” is because you’ve learned how to compartmentalize and frankly, detach from your body. It’s survival.

I couldn’t figure out why it was so challenging for me to get out of my head and into the moment, into my body. I thought it was me being insecure, but realistically, I’ve spent most of my life detaching from how I feel physically. I’ve had to.

So why then, would I magically be able to flip that switch back on at a moment’s notice? My mind knows sex is supposed to be an engaged and fun time, but the second my mind realizes it needs to reconnect with my body in order to feel good and have fun, all bets are off.

It’s not as easy as simply telling myself, “Hey, this is sexy, fun time, you can come back to your body now.”

My mind doesn’t fully trust my body, and why would she? Our body = discomfort and pain. I have very little control over the automatic response that happens when I try to reunite them. I mean honestly, they’ve never really been united. So, needless to say, this is a process.

I started realizing all of this once I experienced being with a truly patient and giving lover. Sex was legitimately fun for the first time. Not only did I discover that I was not, in fact, incapable of a full orgasm, but I also learned that I am, in fact, a very generous and talented lover.

Talk about an ego boost.

My mind was blown. This is how sex is supposed to be?! It really is fun!? I really am great at it like I always thought I could be?! 

I was elated. Honestly, total game changer.

I wish I could say all these realizations make it easy to flip that switch, get out of my head and connect with my body when it counts, but like most things, it’s a work in progress.

Dealing with chronic pain and chronic disease doesn’t mean you can’t have a thriving sex life. It might look a bit different than it does for able-bodied folks, but different doesn’t mean bad. In fact, in many ways, it might even be better, because we have to put more thought and care into it.

Sex in our culture is so nuanced. There are all these expectations about what it’s supposed to be, when you’re supposed to do it, how often you should want it, how many partners is “too many,” and honestly, a whole lot of unnecessary judgment. There’s barely enough room for able-bodied people with all that pressure, let alone the medically complex.

All of this makes it difficult to talk about, especially when you know you’re an outlier. How do you break into a conversation amidst your friends when they’re all swapping sex stories and you’re wondering how sex even fits in with having deteriorating hip joints that’ll certainly have you screaming out, but not from pleasure.

I don’t need to be treated like I’m going to break. I’m not. But I do require a selfless and patient lover. I am that kind of lover, so it’s not too much to ask to have one in return.

It has taken me a while to confidently state what I need and truth be told, I’m still working on it.

I used to mask my disconnect by taking control and being the giver. It brings me immense amounts of joy to please my partner. And, if they’re totally blissed out, it takes the attention away from me. But, that’s not fair. And I don’t mean it isn’t fair to me, it’s not fair to my partner.

Me being able to enjoy myself matters. It matters to me, and it matters to my partner. It’s honestly a bit of a revelation because I’m not totally used to my partners being able to show up for me in that way — to say, “Hey, the way you feel matters, and it doesn’t matter how long this takes. I’m here. I’m not going anywhere.”

It matters that I can openly say, “I’ve got 20 years of compartmentalization to overcome, but I’m trying, and I know I’m going to conquer this, it’s just going to take some time.”

We need to be able to talk openly about the ways chronic pain impacts our ability to have a thriving sex life. Or maybe it’s just me who needs to be able to openly talk about it, but something tells me I’m not alone in this.

Here’s what I do know:

I deserve the ability to fully connect with my body.

I deserve to feel good.

I deserve the ability to fully connect with my partner.

I deserve to speak openly and honestly about what I’m experiencing, and have it be received without judgment.

I deserve to receive as wholly as I give.

Chronic pain takes a lot from us. I could say, “but only if we let it,” but I won’t because I hate that shit. No. It does take a lot from us. It’s exhausting to constantly have to find creative ways to maneuver around and through it — but that’s what we have to do, because we deserve pleasure. We deserve to feel good.

Being able to enjoy sex isn’t only for the able-bodied, my friends.