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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Love, Virtually 

Love, Virtually 

My time as a sick person over the last six years has been served by a constant pursuit of adaptation — a struggle to live a decent quality of life under awful circumstances. It’s really the only way to survive when your health is variable and always changing. Adaptation has touched nearly every aspect of my life from eating to communicating. I have even adapted the way I look for romance. This post is all about the virtual relationships I’ve had while I’ve been sick. I have given the women mentioned in this post pseudonyms to protect their privacy. 

Her hands were cold, but not as cold as the tarp that she rolled my nearly lifeless body onto. I was almost certain this woman — let’s call her Diane The Paramedic — was the same woman I almost went on a date with five years earlier when I first got sick. There she was, with a small band of municipal workers, trying to get my immobile body onto a gurney so I could be taken to the hospital severely malnourished and dehydrated.

I was too photophobic (light sensitive) to uncover my eyes from the multiple layers of washcloths and a pair of pink tanning goggles over my eyes. But something told me it was her, which is weird because I never met her in person, never heard her voice, yet through a sort of virtual courtship I knew her personality and what she looked like.

I forget exactly when we started talking, but I do remember it was on Twitter and I had just been diagnosed with MECFS as I was trying to find my way in the world after college while concurrently living with the villainous disease.

I was able to discern, from her photos on social media, that Diane The Paramedic was very attractive. She had long brown hair with a subtle red hue. Her jaw line was remarkably chiseled and she had one predominant dimple that I found very endearing. From our conversations I could also tell she was very intelligent and quite funny. I think we even had some common interests, maybe baseball and photography.

I eventually sent her a DM (direct message) on Twitter and we started talking. I was at my mom’s house at the time and she worked as a paramedic in the area. We both hinted at meeting, and then one afternoon I was sitting at a local coffee shop and saw her drive by. I quickly messaged her to see if she could have coffee with me or at least stop to say “Hi,” but she was too busy.

As I laid silently in the back of the ambulance on the way to the hospital, I couldn’t help but imagine it was just the two of us back there. She strapped a blood pressure cuff on my arm and I honestly believed it was Diane The Paramedic’s hands touching me. I knew her name was Diane because the driver of the ambulance shouted “Ready, Diane?” Just before we drove off.

I realize this paramedic named Diane very well could have been a 50-year old who looked nothing like the woman I almost met for coffee years earlier, but I prefer to let my imagination run wild and believe, without actually knowing, that it was the same woman. The imagination is, after all, a magnificent and endless thing that is best used uninhibited. And for that reason, my first virtual romance came full circle that day. But it certainly wasn’t my last virtual romance.

I never got to meet Diane The Paramedic, nor did I ever figure out if it was indeed her who took me to the hospital that day. But I have had a handful (maybe more) of virtual relationships since then. For the rest of this post I’m going to focus on my most recent virtual relationship.

It was only a few months ago that Jenna and I started talking online. A mutual friend connected us. According to our friend, Jenna had been looking for someone of the opposite gender to talk to. I fit that description and when I saw how incredibly beautiful she was I had to send her a message — I too was looking for someone of the opposite gender to talk to. 

Jenna lived in another country, but that had no influence on our conversations. Well, besides forcing us to recognize the distance between us.

Soon enough we started talking about personal things related to MECFS because coincidentally we both got sick with the disease around the same time. Like me, she was also very active before getting MECFS. So we had a lot to talk about and connected with each other on a very personal level.

When I first saw her soft features — fair skin, long brown hair, cute smile — I was kind of surprised. I hadn’t expected her to be so beautiful. She was this gorgeous and eloquent young woman in her mid-twenties locked up inside a house for years fighting a debilitating illness, yet she looked like she had just walked out of a dance class. It was astonishing.

One of the first things Jenna told me was that she had been housebound for several years and was now mostly bedridden, except for short intervals of walking. Due to a bad case of POTS (postural orthostatic tachycardia syndrome), she could only stand long enough to get to the bathroom. Because she had been so sick for so long, and what she called “biochemical changes,” Jenna had experienced intense, manic episodes. I could relate and found it comforting to talk to someone who had been through similar experiences. 

Nonetheless, like many of the relationships I have developed on the Internet with people I’ve never met in person, I didn’t put too much of my heart into my relationship with Jenna. This allowed me to actually be more open and forthcoming with her because I simply didn’t care much about what she thought of me. I would, after all, probably never see her in the flesh.

This led to a moment of truth for us. I started talking to her about how I felt unappreciated by the opposite sex and how I was plagued by persistent loneliness and a lack of intimacy. The conversation eventually passed, but the next day she called me out on something.

She asked why I felt unappreciated when I was talking to her — by all signs, a gorgeous and quite charming woman who did in fact appreciate me. I was speechless. I mean, I couldn’t talk because of my illness, but even if I had been able to speak, I still would have been speechless.

She told me that she really liked me and thought I liked her too, but my comments made it seem otherwise. This was not my intent, but it definitely showed how I wasn’t taking our relationship seriously. I had been seeing her more as a woman who had all the makings of an ideal girlfriend, but who was pointless to pursue because the two of us would never be healthy or mobile enough (or even live in the same country long enough) to have a successful relationship.

Then she told me she really liked me and that she got disappointed when I didn’t acknowledge her interest in me. Now, I don’t care how much distance is between two people, or how unrealistic the relationship seems on paper, if you like someone and they feel the same, well, you are fucked. That’s fucked in a good way. And okay, also fucked in a bad way. Basically, you are just all kinds of fucked, except the kind that actually pertains to sexual intercourse, because there’s too much distance between you.

After we both confessed our feelings for each other, things got more intimate between us. We started talking about sex and how we cope with a lack of a partner. We also started talking on the phone regularly and even doing video chat occasionally. But this is when it got tricky. She was often in too much pain to type and I have limited speaking abilities, so she would call me and talk while I typed out my responses. After we hung up I would usually send her a message, joking that if anyone saw our text conversation they would probably think I was harassing her with dozens of unanswered messages, when In fact, she had replied to each one albeit using her voice.

On days when we both weren’t feeling well, but wanted to see each other, we would video chat for only a few seconds, just long enough to exchange a glance and a hearty smile. One time in particular, I vividly remember staring at her pixelated face and we both smiled through intermittent giggles. It was a beautiful and tender moment, the likes of which I have never shared with anyone else. It was very special and I will always carry that memory with me.

This is pretty much how our relationship went for several weeks. I noticed myself becoming more and more dependent on her for moral support amidst that chaos of paying for medical expenses, finding reliable caregivers, and trying to rehabilitate my ailing body. And it felt really good to have her as part of my support system; I was proud to share my life with someone so special, even if from afar. And though I knew her support and our relationship might not last, I didn’t care. I was intent on enjoying what I had while I had it.

I had moved on from hoping Kira would come back to visit, and despite knowing that I would not see Jenna anytime soon, I let myself dive deep into our virtual relationship. We sent each other snail mail. I wrote her a Valentine’s Day card, which because she lived in another country got there a week late. She sent me a giant package of sea salt, of which only the two of us (and maybe some intuitive MECFS people) know the symbolism. I showered her with terms of endearment — when we would talk after a long break we almost always said how we missed each other, which seemed weird to say to someone I had never met, but at the same time it felt right. It felt good to miss someone and be missed in return.

Then, maybe a month ago, Jenna became distant. She started coming online less frequently, and when she did, she would send a quick message then disappear for a long stretch of time. So I figured she wasn’t feeling well and I gave her space. I soon stopped replying to her messages both because I was stubborn and because it was really frustrating trying to hold a conversation with such long breaks. Then she asked why I wasn’t responding. I now realize I should have asked her why she was being distant, instead of being stubborn myself and not responding. So I told her I felt she was the one acting different, and after talking it over, we both decided it was a nonissue. But we were both wrong.

The next day I got a message from her that started out pretty much how every breakup starts out. I would quote her message for you, but it got erased from our text conversation, so you’ll have to use your imagination. She basically told me that she had been acting different because she had been getting visits from a new guy in her life. Their relationship started out as a mostly physical relationship, but developed into something more.

As crushing as it was for me to know that this beautiful, insightful, and caring woman whom I had come to adore was involved with another man, I was still genuinely happy for her. And I never feel happy for women who break my heart. I’m usually quite bitter and jealous about breakups.

It was quite possibly the first time I was actually happy for someone who broke my heart — after so many years of loneliness Jenna had someone, a real life man — one made of flesh and bones and who breathed, not a man behind a computer screen.

My happiness for Jenna began to erode over the next few days. When we talked I would imagine her with this mystery guy, cuddled up, feeling his warm breath on her skin. I even thought about them having sex. And it didn’t help that she actually told me about her sexual experiences with this new guy.

I was not as happy for her after that. In fact, it kinda sent me over the edge. Not in a “I’m gonna burn your house down” kind of way, but I did decide that it was best for my heart and sanity that we not talk anymore. So I sent her this:

I’m really happy for you. I really really am and I don’t want my bitterness to ruin that. But I just can’t talk to you knowing all that is going on. Maybe if I had something similar. But I have nothing, nobody. I’m starved of affection and intimacy. So I’m still your friend, but my heart just can’t take talking to you right now. I’m sorry. You have no idea how sorry and sad I am.

And that was the truth. I was fed up of having nobody. Even more so, I was tired of having my heart broken. Since I first got sick women have come into my life thinking they are doing good, but in the end they just end up hurting me. I know they hurt too and certainly don’t enjoy hurting me, but they get to move on. They have other options, other suitors to soothe their hurt. I have no such thing. Not to victimize myself, but this is how it’s been and how it will continue to be for the foreseeable future.

My boycott of Jenna lasted, oh, about a day. And then we talked for a few days before I tried again, but I’ve concluded that as long as she messages me I will reply. Unlike some of the other women that have hurt me, she doesn’t deserve to be ignored. She is far too thoughtful to ignore or be mad at.

I know Jenna didn’t intend to hurt me, she even said that if our relationship had been in person she would not have gotten involved with another guy. I feel like it’s easy to say such a thing because it’s impossible to know what she would have done in the opposite situation. Though I like to think that if I was healthy I would have been at her house everyday, charming her, so she had no choice but to be with me.

As for my hurt feelings, they are not pleasant and don’t seem to be going away anytime soon. But there was a short period of time where things were rather magical between Jenna and me, and without that bit of magic, that joy in my life, I would have had nothing that even compared to it. So despite the way our relationship has changed course, I am still grateful for what she has given me. 

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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.

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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.

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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.

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