I just came back from an appointment with a new doctor. I was feeling hopeful that this one would help me figure out what’s wrong with me or refer me to a specialist who could. But basically he took the nice way of telling me he thought it was all in my head. After giving him an array of symptoms — a shit immune system that gave me bronchitis three or four times last year, pins and needles in my hands and feet and a loss of feeling in my clitoris, and chronic fatigue so bad I get back pain if I walk more than a couple hours — he told me he didn’t see anything worth testing for any more than I already have. He recommended I go to a support group to deal with my symptoms.
I want to scream. I know this doctor was doing his job to the best of his knowledge , but I felt like he just told me to go home and die. I’ve been sick more often than not the past 10 years, two of which I’ve been with my partner. Most of our relationship I’ve been struggling with some sort of health issue. He’s come to sit with me at numerous doctors appointments, driven me to get countless medical tests and rushed me to the hospital. But every time another doctor writes me off, saying, “get a massage” or “I don’t see a reason for your symptoms,” I worry my partner will start to think it’s in my head too.
I really appreciate that my partner is supportive enough to drive me to medical appointments, help me run errands or cook for me when I can’t. He’s the most understanding man I’ve ever met. I know that I’m lucky — dealing with chronic illness can feel lonely and isolating. It can feel like nobody could want to invite what you struggle with into their life. And when someone does, it can be amazing to have the support of another person on your team. However, romance tends to drown in the sea of chores and lethargy. After a lot of Netflix sans chill because I’m too tired to do anything, I begin to fear he’s turned into more of my caretaker than my lover.
When I don’t feel well, my partner doesn’t initiate sex — after all, what kind of asshole would try to sleep with you when you’re sick? But the thing is, I feel unwell most of the time. If I waited until I felt better, we would never have sex. So because I have a fairly high sex drive, I’m usually the one initiating , but because I’m also the one who’s sick, I often get too tired to follow through , leaving us both frustrated.
I realized that something had to change when, while I was giving him a blowjob and was too tired to move from under the covers, he said he felt like he was tucking me in.
When I consistently feel like I’m coming down with a fever, the last thing on my mind is leaving my apartment to run errands or socialize , never mind having sex. But that doesn’t mean I don’t want it. Sex gets my mind off my symptoms and helps me connect with my partner , and the endorphins that give me a little boost of energy are also a bonus. Mentally, I want to be intimate , but a lot of the time that doesn’t transfer physically. It’s hard to get wet when you’re so exhausted it hurts. However, I discovered what I need for those times is for my partner to come on to me , even if I seem like I might not want him to. I know it goes against some people’s ideas of consent , but I can’t tell you how many times I didn’t think I would be up for sex until suddenly I was.
What does this look like exactly? Well, it starts out slow and builds up. Lots of foreplay, and I don’t mean just eating me out. Maybe a long, intimate conversation where we both connect emotionally. Lots of complimenting me — ”I’m so happy I finally have time alone with you. I love feeling your smooth skin. You’re so sexy when you smile.” Helping me feel safe in his arms by just holding and caressing me. Inviting things to go further by kissing my whole body , and at the same time, letting me know if I’m too tired, it’s okay if we just make-out. Asking for enthusiastic consent — ”Do you like this? Should I keep going?’ Would you like if I did this?” Communicating back to my partner —”‘I like that. Keep going. I’d love for you to do this.” Sometimes it looks like a lot of lube. Other times, a lot of tears. If my body and mind aren’t working together, that’s okay — we’ll go back to Netflix sans chill and try again another day.
If you’re also dealing with chronic illness and trying to have a sex life, know that there will be mistakes and lots of important discussions around them. Try not to feel guilty about having these discussions. Throw out the expectation that sex should be seamless. Despite what you see in movies or porn, nobody is a mind reader — and when you’re dealing with your body not working the way you want it to, you need even more communication around finding a way to be intimate that works for both of you. Anyone can just have sex , which can be fine, but also feel akin to doing the laundry because it needs to get done. It might hurt because you’re not wet enough, but you don’t want to make a big deal out of it because it’s been a long time since you had it. Don’t do that. You deserve better sex than that , even if it’s not as often.
So how do you figure out what works for both of you? You might talk about what positions work better — maybe you have back pain and can’t lay a certain way. If your partner wants to please you but is too tired to use their penis, you could look into buying a vibrator. It sounds obvious, but a lot of people forget that sex is about working together to pleasure each other, not just an activity you do manually.
And good sex? The kind that gives you euphoria just enough so you can temporarily forget how ill you’ve been feeling? That takes practice. It takes reading your body. It takes reading each other’s bodies. It takes learning how to communicate both verbally and through social cues. I know it seems daunting that something as simple as sex — the one thing you shouldn’t have to worry about figuring out on top of all your health issues — can take work. But it won’t always feel that way. Once you’ve developed these skills, they’ll start to flow more naturally. Soon the slow build-up that once seemed awkward and frustrating will turn into a quickie, where everything fits right into place.
Sex with chronic illness is a work in progress. However, I’m happy to report that the last time my partner and I were together, it really did flow like that. The euphoria washed over me. I temporarily forgot about how unwell I’d been feeling. And I didn’t even need to grab the lube.