In the lineup of things in my life that are diminished by chronic illness – sex is in my top three. I have waited so long to write about it because, honestly, it feels like the elephant in my room. It’s taking up all the space, but I don’t know how to shift it. It would be great if I were writing this with some expert tips and were going to “blow your mind” with ideas you were leaving off the table about how to improve your sex life with chronic illness and chronic pain, but sadly. This isn’t that. This is me, laying out for you, some of the cares, concerns, and frustrations of my sex life with chronic illness.
I’m in pain. All the time. I don’t feel sexy. I don’t think I look sexy (which feeds into the I don’t feel sexy). My body has physically deteriorated from a muscle wasting disease that kicked off my autoimmune cluster followed by years of oxygen deprivation and deconditioning. I struggle to have any kind of sex life. I am in a committed relationship and am incredibly attracted to my wife. She is HOT! Truly, I desire her, and more than that I want to make her feel good and feel the love and desire I have. Most days it feels like there are more obstacles than pathways. Starting with 1) sex, for me, requires supplemental oxygen. If you aren’t familiar with it, an oxygen concentrator makes the sounds Darth Vadar makes. It’s incredibly unsexy foreplay to start by turning on that mechanical wheeze and then unfurling a length of plastic tubing to strap on my face. Add to the fact that my migraines increase as the day progresses, so sex is only kinda-possible before 1:00pm. Nothing says sexy like the harsh glare of high noon for getting in the mood.
Then there’s pain. Okay, most of us reading this have it. Whether yours is dull or sharp, continuous or progressive, pain will likely influence your sex life. For me, it is the before, during and after of pain. It is the pain I’m in all the time. It is avoiding the days and times of day when my pain is so bad it’s prohibitive. During sex, there’s pain from the way increasing blood pressure makes my head throb worse, to the fact that I’m working different muscle groups to push my body with hers, to how my skin hurts to have so much contact. From there it is the fact that sustained muscle involvement – like what’s involved in having sex or trying to achieve orgasm (pointed toes, holding breath, etc.), causes me days of rebound pain. And I’m not even talking about athletic sex, hell, I’m not even talking about being on top! Just for me to be on bottom requires a small pillow fort to support my hips and reduce the amount of pushing I must do and still the nature of the activity is deeply draining, fatiguing, and painful. In addition to what it depletes from me, it’s hard to feel like I’m ever giving enough to my wife to make the experience something that even approximates satisfying for her. Meanwhile, I know that she’s dwelling on how much she’s taking out of me by how much longer it’s going to take her to orgasm – something that never improved one’s orgasm or pleasure of sex! Nothing about the experience feels simple, emotionally or physically.
Many say that desire tends to decrease as a woman ages. I don’t know whether I’ve had a chance to know if that’s true for me. Certainly, the burdens of pain, fatigue, medications, and complications from my illnesses have shifted my desire. I was sick enough for a set of years sex was almost completely out of reach. It was a part of myself I essentially amputated in order to not feel the pain of its acute loss. Now that I’ve been severed from my sexual self, I’m unsure how recover lost ground in a territory that is so vast, seemingly inaccessible, and now unfamiliar? The kind of sex we used to have (frequent, vigorous, athletic) is out of reach. The unquestioned outcome for both of us had been orgasm and, yet, that is no longer a sure thing. My orgasm seems to have dried up blown away. Something that used to be so ready, immediate, and easy to achieve, is now elusive. Along with that, it leaves my partner feeling less confident about and successful at pleasing me.
What is the “goal” of sex if not orgasm? When do we decide we’re done without that obvious crescendo? Now it feels anti-climactic at best, and disappointing at worst when we fumble our way towards a fizzling decision to tap out. How do I grieve these losses – of my orgasm? My sexual potential? Of never reaching my sexual peak. Of knowing I’ll never have a vigorous pounding again. And what do I imagine taking their place that feels like anything other than a consolation prize? We have found it so connecting over the years to be able to cum together and make one another cum. What could ever take the place of that? It all looks and feels quite grey and bleak compared to the technicolored dream we once had. It’s hard to imagine how it could be otherwise.
It is true for us, as I would imagine for many couples who experience chronic illness and pain, that our intimacy has suffered tremendously, too. From the little touches that are no longer exchanged because my skin hurts too much to touch, to the fact that I sleep propped up for migraines and circulation, we don’t necessarily go to bed at the same time and we are, therefore, no longer spooning or cuddling each other before sleep, and a million little ways in between: my fingers are too swollen to hold, my thrush means I’m not kissing her deeply, the burden of fatigue robs me of desire, the perfunctory nature of surviving means there’s no spontaneity left – we’ve lost the flirtatious playfulness we used to share when life didn’t seem like such a burden all the time. How can these be recaptured? Relearned?
These are just a some of the thoughts we’ve been talking about and exploring together. My wife is really at a crisis point. She’s been putting her sexual self on hold for so long she’s like a pot that’s been ignored for too long and is ready to boil over. Yet, the answers about how to get her needs met aren’t simple, and they tap into all kinds of fears and guilt on my part about keeping her tethered to someone who isn’t really meeting her needs. Wishing for her that I were out of the picture so she could be living the full and healthy life I think she’s entitled to… But once again, we chose one another, we chose this relationship, and for the time being, we chose monogamy. Meeting our own and one another’s sexual needs with chronic illness and pain is a real challenge. What have you tried? What’s worked for you? I’d love to hear from you about this. With you in grief and solidarity.