What about Sex and Chronic Illness? Part 2

Oct 29, 2019

So, if sex (as referenced in the Part 1 post on this subject), is the elephant in my living room.  I can either eat it, ride it, or keep it for a pet.  Either way I’ve got to get to know it intimately and not avoid it.  Okay, okay, my metaphor is breaking down on me.  But here’s what I mean: our sex lives, no matter how much they may be troubling or confounding us, are never going to improve without us getting up close and personal with as many of the issues, problems, concerns, and details as possible.  We must get invested, get vulnerable, and go all in.

For me this means looking honestly at my contributions to our sex life being where it is.  No, I’m not talking about trying to blame our sex life on me and on my illness.  But what responsibility do I bear?  What are the ways I can step up differently?  How have I made things worse by taking no action?  Surely there are days/afternoons/moments when I could have pushed for intimate or romantic moments when I haven’t.  Here’s part of the rub.  When it comes to sex, even if we’ve been with our partner for years and years, initiating sex – especially when there has been a lull, breakdown, or hiatus, feels risky.  I can be a middle schooler again when it comes to instigating and feeling like I may get rejected.  In the face of that, inaction is often easier than exposing myself and taking a chance.

I know from my wife’s perspective that she has spent so many years being turned down, told to stop, rebuffed, and pushed away by me that 1) it is hard for her to initiate, 2) she feels bad getting rejected, and 3) she feels bad making me reject her.  Ooof.  Where does that leave us?  Do I have to always initiate sex?  Maybe.  We have talked about this one at length, going around and around about the fact that it isn’t fair for either of us to be the sole initiator of sexual contact.  And, because my body is almost always the physical limitation, it doesn’t make sense for her to have to be some kind of mind reader.  I should have some way of signaling if there’s a day when I would consider some action.

Ok, but then that begs the next question, some fooling around or a quickie, does not require the same energy (and therefore recovery) as a whole THING, a whole sexcapade.  So, how do I get clear with her about which I mean and what (god forbid) if that changes mid-interlude?!  Alright, we don’t yet have all the answers but here are some things that we’re trying.  As I mentioned before, there are times of day that work for me (9:30ish – 1ish).  Luckily, most days she works from home and can flex her schedule (we’re ahead of the curve here – this is something to be grateful for!).  So, here’s what we’re trying: suppose I’m having a “good” morning; perhaps I don’t have anything scheduled for the next couple of days and I feel good enough upon waking and taking my morning meds that I don’t need to just head back to bed.  If that’s the case, I take one of our red glass hearts and leave it out someplace where we’ll both see it.  (This isn’t too hard.  We have a small house and share the same bathroom.  That’s where I leave it.)  This is my, “I’m down to clown” signal.  That way she can decide when is a good idea to stop working and either one of us can start the process of initiating something intimate. 

For now, the heart being out simply means I’m up for what we like to call “skin appreciation.”  Time where we aren’t wearing clothes and are touching and enjoying one another’s skin.  We’re usually in bed, but not always.  Yes, if we’re both up for it, foreplay can develop, and we can see where it leads us.  But right now, we just needed more access points to have intimate time together.  This is helping us get the ball rolling since so many of our “typical times” for closeness (bedtime, snuggling, being playful throughout the day) have not been happening.

The second idea was given to me by an intimacy coach.  She talks about the metaphor of a car’s accelerator and brake pedals.  If we think about desire as the accelerator, we can each develop our own lists of what kinds of things build our desire: massage, gentle touch, the kids being in bed, cooking together, erogenous zones, a clean bathroom, these can be anything.  But what helps get or put you in the mood for intimacy?  Make your list and then share it with your partner.  Then there’s the break.  What are the things that prevent or prohibit intimacy?  Too much pain, fatigue, lack of oxygen, other symptoms, perhaps things like a dirty kitchen, a recent argument, or emotional reasons like grief, trauma, PTSD.  Now discuss these lists with one another.  It can be that I’m having a day where my physical pain is low enough for me to consider sex but my emotional pain (grief at a recent death) is too high for me to get in the mood.  Looking one by one at the items on the break list – are there things that can be done to shift, alleviate, or diminish the impacts of that item?  When deciding if it is time to make a move, no amount of stepping on the accelerator will be enough if the brake is fully engaged.  It may make more sense to think about how to take things off the brake then how to add things to the accelerator.

Prince said, “I want to be your fantasy, and maybe, you can be mine.”  Fantasies, no time like the present to explore them.  Yes, again, this is vulnerable territory.  What if you reveal that you’re curious about anal play, as furies while introducing a third?  And when you ask your partner about her fantasy she says, “I want you to dress up in the Leia bikini from Jedi.”   We can acknowledge these are two different worlds of fantasy play.  Talking about and revealing your fantasies must be done in a safe and trusting way.  Allowing one another to honestly share a glimpse into a juvenile titillation or a developed curiosity might be just the spark that can lead you into something mutually fulfilling; or even to be turned on by the other’s desires.   If you don’t allow your partner to know you in this way, you’ll never know.  Because some things might off the table physically, working creatively in other areas might just be the way to open your sex life to something different than it was before – defying our desire for comparison, you may find yourself in a new and satisfying place.  Giving life to your fantasies could lead you back to one another.            

Our sex lives, just like our feelings about sex and our sex lives are nuanced and complex things.  They were formed by the people who formed us, shaped by the culture around us, and now inhabited by these bodies in which we dwell.  We are sexual beings.  While there’s so much I DON’T know about how to make a satisfying sex life with chronic illness, what I do know is that the pursuit is worthwhile.  Ultimately, it is a love-song to my pleasure-centers and my partner.  What could be a better use of my time than that?

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