Life Without Sex: What They Forget to Tell You About Chronic Illness

Life Without Sex: What They Forget to Tell You About Chronic Illness

A version of this essay was first published by Men’s Journal in 2016.

After kissing me for a few minutes, Laura, my ex-girlfriend, pulls her top down and lets me feel and kiss her breasts. I am so excited and nervous I almost enter an apoplectic state. It is a moment of rapid heartbeats and shaky breaths. But before we can go any further my body starts to falter and my health dwindles. My sex drive is still there, but my stamina is not. As I strain my neck to reach her chest I can feel my muscles weaken; for months it has been impossible for me to lift my head higher than my pillow or stretch my limbs. Now, I am physically unable to get to her.

Perhaps recognizing my struggle, Laura (not her real name) brings her body closer to me and then after a few minutes of feeling like an adolescent male at a bikini contest, I begin to seriously doubt my sexual aspirations. Intense nausea poisons my insides as I try to carry on. Soon my body starts to get tremors. My torso and legs are convulsing as I clumsily kiss her body. Finally she pulls away as she realizes the absurdity of trying to have sex with a severely ill, bedridden man. After all, if I died in the middle of sex she couldn’t honestly say it was a surprise. As Laura gets up to leave she turns to me and says, “Thank you, Jamison.” It feels transactional, as if she was validating my parking. I can’t say I expected my sexual desires to be entirely fulfilled, but neither did I expect them to be so crushed. Expectations are futile when you’re chronically ill.

I first got sick in 2010. I was 22, looking to graduate from college, working as a group fitness instructor, and pursuing my passion for bodybuilding. One day, when I was doing sub-maximal squats with 315 pounds, I became violently ill. I spent the rest of the day in a fetal position curled around the toilet before finally going to urgent care. It turned out I had mononucleosis, at least initially, but my condition only got worse over time. Then after months of misery, I was diagnosed with myalgic encephalomyelitis, a mysterious neurological disease sometimes patronizingly referred to as “Chronic Fatigue Syndrome.”

Although it is rare, myalgic encephalomyelitis can be fatal. So when I became bedridden in January 2015, I appeared to be on a slow crawl toward death. I couldn’t speak, chew food, tolerate light or, it turns out, have sex.

It would be difficult for me to say that not having sex was the hardest part, because, well, not eating was pretty awful. Still, going without sex was always on my mind. It was unimaginably hard, particularly knowing that sex is not conducive to recovering from poor health. To this day I still have trouble admitting that sex is not an option, but the truth is, even if I had a willing companion, the post-orgasm exhaustion I experience after sex is enough to ask for my last rites.

I’ve been celibate now for three years. On the few occasions I’ve given myself an orgasm in that time, the following days feel like equal parts sleep deprivation, starvation, and the world’s worst hangover all mixed into a sinister concoction. The problem with abstinence, however, is that the body of a 28-year-old man is accustomed to having orgasms, and it isn’t afraid to take care of business on its own. In other words, if I go a few weeks without having an orgasm, I usually wake up sometime around four o’clock in the morning with my sheets soiled and remnants of some secret sexual fantasy still floating around my mind. These wet dreams scare me. And not just because they have been way more frequent than during puberty. They scare me because I am helpless in preventing them, and they still leave me with the miserable post-orgasm hangover. Sexuality has become a vicious cycle for me. One in which I either give myself an orgasm and pay the price, or I wait for my subconscious to do it in my sleep.

The weird thing about chronic illness, at least for me, is no doctors, nurses, or even patients, seem to talk about sex. A connection between the two is not mentioned in medical pamphlets, or in any of the patient-targeted material I’ve read. Myalgic encephalomyelitis is among the diseases with the lowest amount of government research funding in the United States. There have only been a handful of studies done on sexual dysfunction in patients with myalgic encephalomyelitis; they have all been limited to women and performed abroad. Perhaps this is why nobody talks about sex and chronic illness, or how the urge for sex is still there, but the ability to perform is not. Nobody warns of how the little square condom wrappers on your nightstand will one day vanish, only to be replaced by little square alcohol pads used to sterilize the IV in your arm.

The harsh reality is, I don’t know if I will ever have sex again. At the moment, I don’t even feel like trying; it only makes me sicker. Hopefully one day that will change. In the meantime, I have found peace in remaining celibate. And I know, without a doubt, that as soon as my body can handle sexual exertion again, and I find myself with an attractive and understanding woman in my bed, the rest of me will certainly oblige the urge to have sex.

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Sex and Sickness Part 3

Sex and Sickness Part 3

Do you know the feeling of persistent loneliness? The kind that slowly creeps into your mind, then your body, as it leaves you starving for affection? For the sake of this post and our mutual commiseration, I hope you do, but maybe you are one of the cheerful extroverts that never gets lonely. In such case, just try to feel lonely for a few minutes while you read this post. Thanks

I’ve been dealing with persistent loneliness for about seven months. Well, it’s actually been a lot longer, but I had my last taste of intimacy seven months ago, so we’ll go with that.

My last intimate experience was with Kira. Well, actually, that’s just the name I came up with to protect her identity. I’m fairly certain we are the only two people who can connect her real identity to the pseudonym I gave her. But ironically, some people knew her as Kira before this post went up — it is the name I gave her in my unpublished memoir Not Like The Whiskey, which I’ve shared with a dozen or so people. So sometimes people will ask me: “How’s Kira?” It makes me laugh, and then feel really, really creepy. In fact, sometimes I even find myself calling her Kira in my mind.

Okay, now that you know the full extent of my creepiness, let’s call this tangent done.

So Kira came back into my life right around the time Mia exited. It was good timing, and although I didn’t expect the feelings I first developed for Kira to return, they did. They really did.

I’ve known Kira since college, but we drifted apart after graduating and I got sick. So I was surprised when she sent me a text message a few days before I had a falling out with Mia. I initially ignored the message because, in addition to still talking with Mia, I was actually holding a grudge against Kira for not reaching out or coming to see me after I first got sick.

Why did I hold a grudge? Well, probably because I’m an immature baby trapped in a man’s body. (Oh wait, that’s Donald Trump. My bad). No, actually I’m just a little sensitive at times, I guess, which I think is understandable considering the situation I’ve been stuck in for the last two years (but really six years).

When Kira first arrived the room was very dark. But as she walked through the door she ushered in a stream of bright light — she was literally glowing. It was summer so she was wearing tight Daisy Dukes with white lace around the edges. But I could have cared less about her tight-fitting shorts, I was fixated on one thing only: Her hair.

And you thought I couldn’t get more creepy. Hah!

So, yeah, I’m moderately obsessed with Kira’s hair. She has this amazing wisteria-like hair that has always fascinated me. It’s brown with natural blonde highlights all bundled up into a maze of beautiful, vivacious curls framing her soft, gorgeous face.

She knows how obsessed I am with her hair and despite it being one of my most creepy infatuations, I’m not ashamed she knows it. 

Okay, so Kira, gorgeous hair and all, walked into my room, she was glowing, it was the first time I saw her in at least four years. She was more beautiful than the last time I saw her, and while that could just be the intimacy deprivation talking, I really do think she got prettier.

Within seconds Kira was sitting next to me holding my hand. Within minutes she was in my bed and within a few hours we were wrapped in each other’s arms, daring one another to make the next move. While we danced around actually kissing each other, she rubbed my head and traced patterns with her fingers on my chest and back. It was both tortuous and one of the sweetest moments I have ever had. Why tortuous?

Well, she had a boyfriend. Hmm sounds familiar, doesn’t it? I don’t know why, but I have a tendency to get involved with women who are unavailable.

It was such an incredibly frustrating situation — there I was with an absolutely gorgeous woman showering me with affection, something I had been starved of for such a long time. She was making herself available to me, at least in that moment, so what was I supposed to say? “Sorry Kira (or whatever your real name is), but you have a boyfriend and I must respect the sacred bond between girlfriend and boyfriend”? It would take an incredibly strong-willed person, someone infinitely better than me, to say such a thing. I’m not that strong when it comes to temptation. At least not lately.

I knew she would eventually leave but if she was making herself available to me than I wanted to take advantage of it. I couldn’t read her mind, but to me it felt like she was thinking “Okay, I didn’t expect to have this connection, and I know I love my boyfriend, but I think it’s okay if I pretend, just for this weekend, that Jamison and I are a couple. We won’t have sex, maybe we will kiss. NO, we DEFINITELY won’t kiss. NO KISSING! But I’ll just be with him and it’ll be really beautiful.”

That evening we both laid facing each other, our legs tangled, not talking, but enjoying our senses — the sound of us breathing in unison, our respective fragrances, the smiles we were toting. We quickly fell into a cycle of heavy petting and getting as close to kissing as possible without actually letting our lips touch. It was almost like we were playing a game to see who would touch the other person’s lips first. And we both lost a few times, but none were a full on kiss. It was more like the way a small aircraft skids alone a runway before finally touching down or the way a rock skips across the water when thrown just right.

It was actually pretty fun, until it wasn’t, but it was certainly a rare indulgence in feeding my need for affection and intimacy. It became a cruel game that I couldn’t play anymore. So I kissed her, softly, and then I quickly pulled away. I wanted to see her reaction, but it was dark and hard to tell, except that she seemed unfazed. It was a very tender and sweet moment.

Later, after we said goodnight, she snuck back into my bed. But when I tried to kiss her again she seemed hesitant. It was then that I got this weird feeling: It was okay to hold her, but not kiss her. So we spent the rest of the night snuggling. And that was it.

In the morning, there was more mild affection, but no kissing. Then she left.

She was crying as we said goodbye. I had never seen her cry, and she admitted she wasn’t the type to cry; she never cried. But there she was, crying.

It was at that moment I realized the sadness was about me being sick. She was crying, not because she had shared a romantic weekend with a man she adored and she was sad to leave him. She was crying because she had a nice weekend with a sick friend and there was nothing she could do to make him better. She later told me she got in bed with me because that’s the only place we could “hang out” and if I were healthy and out of bed we probably wouldn’t have ended up snuggling and being so affectionate with each other. I think she was right, we probably would have hung out on the couch with a safe distance between us, all while I secretly hoped we would end the night holding each other. So I guess I have being sick to thank for bring us closer together. But after Kira left I found it hard to shake the feeling that she was, at least partially, acting out of pity. I still can’t shake that feeling, probably because I know nobody wants to fall in love with a sick guy, even if they are legitimately attracted to him.

Kira told me she would be back in a couple weeks. It’s been seven months. Immediately after that weekend we had this intense correspondence that neither of us wanted to let go of, but it eventually we did — it faded, as many things do over time.

For the first month or so we talked everyday. She sent me a text message from work every morning and took me on virtual adventures via video chat in the evenings. We even made a date for her to come back and visit, but that week she wasn’t feeling well, then she had car problems. I offered to pay for a rental car, but she refused.

Now I’m lucky to get a text message from Kira once a week. And when I do, her messages are usually happy ones congratulating me on my improved health. But I can tell that the romantic feelings she had for me for that brief moment in time seven months ago are gone. Her messages are now full of happiness and excitement in the way somebody feels about her dear friend, not how a beautiful woman gets excited to kiss her boyfriend after a long absence, or how anybody gets excited about a new romance. She, as it seems, is madly in love with being my friend. But even so, our friendship has become peripheral to her.

She occasionally sends me messages that say “How come we don’t talk as much?” or “We should FaceTime more!” And to that I want to say “Well, you gotta put in more effort. It’s just not my style to keep pestering you until you respond to my messages.”

A couple weeks ago Kira told me she was flying to visit her family. It sounded like a nice trip. She was messaging me from the airport; it was good to talk to her. We hadn’t talked in awhile, and naturally, I wondered how things were going with her boyfriend. (I know, I’m a creep). I wondered because (1.) the last time we spoke the relationship wasn’t going well and (2.) she told me the next time she’s single we’re gonna do a lot of making out. (Yes, I am desperate enough to cling to something she probably meant as a joke, but that’s okay). Later that week I saw photos she had posted and there was her boyfriend along for the trip to see her family.

And that’s why I hate following Kira on social media. Even when her boyfriend isn’t in her photos, it’s just hard for me to see her life and not be part of it. It’s kind of heartbreaking.


But if there’s one thing I’ve realized about being sick, it’s that no one person, or even many people can cumulatively break your heart the same way life can. A love interest can break your heart, but you eventually get over it. When life breaks your heart, oh boy, that shit sticks with you. So whether it was Sasha or Mia or Kira (or any of the other pseudonyms I’ve come up with that end with a), no person can break my heart beyond repair, certainly not the way life has, and as depressing as that sounds, it’s not as bad as putting my mental health at the mercy of a single person.

And that in turn, allows me to focus on the sweet and tender moments I once shared with Kira.


A few months ago I saw photos Kira put on Facebook of a vacation she took with her boyfriend. There were these romantic shots of just the two of them kissing while silhouetted in the setting sun. Initially I got upset, consumed by my jealousy, but then I remembered I know what that feels like, and not just kissing in general; I actually know what it feels like to kiss Kira. And that’s something I’ve wanted to feel since I first met her. And if that’s as far as our relationship goes, that’s enough for me, because it was something special, if only brief. So I clicked through her photos again. And there we were — our eyes closed, shrouded by the sun, kissing each other.

Please subscribe to my blog for more mushy confessions about my nonexistent love life, and also some random posts about chronic illness and the occasional political rant. Wow, that was a good pitch. I should be a salesman!

Sex And Sickness: Part 0

Sex And Sickness: Part 0

*Don’t you just hate when someone writes a story in fragmented sections and then publishes them out of order? Well, okay, I’m sorry! But here is the prequel to my previous Sex and Sickness posts.

When I first got sick in 2010 I was dating a gorgeous, smart, blonde-haired kinesiology major named Molly (not her real name). The relationship wasn’t going anywhere. However, the mysterious illness that at the time was mono and later became MECFS, only made our relationship more vagrant. 

She seemed to be just as confused as I was about the symptoms, especially when our sex life dramatically plunged. We tried and failed several times at intercourse after I got sick. Each time it felt like a gamble. Would I be able to perform? Or would my pulse start racing and my muscles tremor until we finally decided it was a bad idea to continue? 

I describe one such sexual encounter in my unpublished memoir, but I don’t want to post too many excerpts before it’s published, so I’ll do my best to recreate it here:

Molly came over one day after a run. I had been in bed the entire day ignoring her text messages asking if I wanted to workout with her. We had only been dating for a couple months, but we quickly fell into a pattern of going to the gym and running together. Then I got sick and we didn’t know what was wrong. Too much caffeine? Too much working out? 

That particular day we were both exhausted, so we curled up in my bed and fell asleep. The house was warm, our bodies warmer cuddling one another, and outside it was a beautiful overcast December day with intermittent rain. It was the type of day one just wants to stay balled up under the covers or in front of the fireplace. As we fell asleep, and later when we woke up, I remember feeling such peace. The preceding weeks had been manic, filled with fear and uncertainty about my health, but that moment in bed with Molly was so calming, I wanted to bottle it and take a sip for every future moment of panic I would have, and there would be many. 

We tried to have sex within minutes of waking up. It was a disaster. Nestled against me, Molly started to warmly breathe on my neck. Then I slid my hands under her shirt, and along the small of her back. I kissed her neck. If we weren’t awake before, we were now. She pressed her body against mine, and soon clothes started coming off, but nothing pleasurable was happening, not to me, not the mechanical way it should. I tried to remain calm, but soon became unnerved at the thought of underperforming, or worse, not performing at all with such an attractive woman in my bed. I needed a spark but was too drenched in sickness to ignite my lust-filled aspirations. 

My heart began pounding too fast to think, like a firefighter breaking down a flaming door; the door being my head. 

I tried stalling with the hope that a sudden rush of something, anything would come fulfill my sexual desires. I kept kissing Molly, but pulled my pelvis away from her body, pinning it awkwardly to the mattress, as not to show my impotence. Her soft lips did something to me, but not nearly enough. 

At one point I looked up at the wall above my bed and saw a poster of the Rat Pack, Frank Sinatra and friends, each with a different expression of amusement about my flaccidity. On the adjacent wall, there was John Belushi looking confused (among other things) as to how my performance could be so lackluster. The peace and calm was then gone and all I could feel was that I had done something wrong. I felt so embarrassed. 

Molly reached for me and I tried to suppress my panic, internalizing the terror of the usually enchanting moment when I beautiful woman wants me; instead the force of her increasingly impatient grasp left me squirming away once more. But I stubbornly kept trying and failing, only to pull away in shame. 

Eventually Molly insisted we stop, so we did. It was actually a relief that she made the decision. Otherwise, I probably would have kept on trying until I dropped dead. After walking Molly to the door I watched her drive away, then I crawled back into bed.

We tried to have sex a few more times after that day, and we were actually successful once or twice, that is if you count success as technically performing the act albeit with little pleasure or satisfaction. These bitter triumphs misled me. I thought I was getting better, that my health was returning, when in reality the disease I was battling must have simply decided to take the night off. Still, this was when the illness was very acute and symptoms like tachycardia, chills, intense nausea, muscle weakness, disorientation, and a myriad of other symptoms I can’t even begin to explain, were daily occurrences. 

Now in hindsight it seems idiotic. I was trying to have sex with a severely impaired and dangerously sick body. It was like trying to enjoy a snow cone standing completely naked in the middle of the Alaskan tundra while a giant moose rammed me with his antlers. Sounds like fun, right? Kind of makes you want to go grab a snow cone, doesn’t it?

Anyway, so yeah, not a lot of sex for 22-year old, Sick Jamison. Then eventually Molly bailed. But this post isn’t really about her. Two years later, after receiving my diagnosis of MECFS, I dated another woman, Lily (again, not her real name). 

I sublet Lily’s apartment while I was looking for a permanent home. This was after I saw Dr. Peterson several times in Lake Tahoe and had little to show for it. So I decided to put off further treatment and live life on my terms with what little health I had left. Apparently this included dating a woman nearly a decade older than me who . But hey, it felt right at the time. 

In the intervening years after my relationship with Molly and before meeting Lily, I had some innocent intimate encounters but the clothes always stayed on. Lily was my first sexual experience in two years. Do you want to guess how it went?  Yeah, not great. But not for the reason you may be thinking. We did not actually have sex during our first sexual encounter. This was a conscious decision on my part. I wanted to test out the waters, so to speak, because I was still haunted by my failed attempts at sex with Molly. I wanted to save my already bruised ego the embarrassment and my body the repercussions of a botched attempt at sex. So we stuck to foreplay and it went surprisingly well. My body only mildly freaked out — some tachycardia and weakness — but nothing I hadn’t experienced every day since I first got sick. The reason it went bad, however, was because Lily took my abstinence personal. She may have thought I wasn’t attracted to her or was just frustrated, but either way, she became very truculent with me after that.  

From The New Yorker

We made up and had another sexual encounter. But first I shyly explained the reason for my reluctance. I thought it would be a relief, and for a time it was — we decided not to have sex until we both felt comfortable. But then the time came when we were ready and it was a disaster — I had to stop prematurely. Lily reacted like Molly only she was full of rage and took my impotence as a personal insult. It was as if I had made a choice to acquire a disease that robbed much of the fun and pleasurable things in life just because, I don’t know, I wanted to tease her? Lily either forgot I was sick, drastically underestimated my illness, or simply did not care. Whichever it was, it seemed she thought I wanted her to think I was interested in having sex but not actually do it. She thought I wanted to get close to having sex, only to fake impotency at the last second. Now, if you’re familiar with patterns of male sexual behavior, then you know this has probably never happened in the history of world. I mean, what guy would ever do that? And I ask not just because guys like me generally have good intentions, but because, well, most guys enjoy sex. A lot! And even if one had intended to do such a manipulative thing, he would most certainly foil his own inane plan and give in to the urge for sex once the kissing started.

Honestly I don’t know what Lily thought of our relationship. My feelings about her may be skewed by our incompatibilities, but, as time has passed I have developed a more pragmatic view of the time we spent together.

Eventually after many fights — one because she expected me to throw out her rotten bone broth (I’m a vegetarian) without even asking me to — we continued to have sex. Once or twice it felt okay — the post orgasm hangover wasn’t too bad. But most often it came with the same interchange it had two years prior — a few minutes of bliss for a few days of misery. That was nearly five years ago. It was the last time I had sex. 

*Thanks to everyone that has read my Sex and Sickness series. And to those who have requested a Part 3, it’s still in the works!