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, searching for a way of dating with chronic illness. 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, which was sort of my version of dating with chronic illness. 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 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 attempt at dating with chronic illness.
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, even talking about our previous attempts at dating with chronic illness.
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 was not good at dating with chronic illness. 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 of dating with chronic illness. 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 because she told me about her sexual experiences with this new guy. Clearly she was better at dating with chronic illness than I was.
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, trying to manage some version of dating with chronic illness. 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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30 thoughts on “Love, Virtually ”
I feel for you. I had to excerpt the f part to send to a long distance friend.😕
Oh thanks for sharing it!
His reply was, well were both f!😂
I was lucky enough to be married and have had two of our three kids when ME/CFS happened to me, back in 1989. Our youngest (and the other two, really, since they were very young when I got sick) have never known the real me. Or the OLD real me. That makes me very sad. My husband has quietly been a rock, doing what’s needed as needed, but I was never as ill as you are, so it wasn’t as hard on him.
What was hard was making the adjustments – without any adjustability on my part. We’ve survived. It will be 42 years in May. But I never thought I’d put him through something that has been going on for 27 years for me.
Hope they figure this out, so you can get well, and, if belatedly, resume a real life. I pray this for you.
Wow! Well I’m glad you have him. We all need our rock. My mom has been mine.
So glad your mother is there for you. Many can’t be.
I like to think he gets some compensation out of it, and he’d never complain, but I try to be very aware of how many burdens he carries that should have been shared. Though while he was still working I somehow managed to do all the family paperwork, back when that meant I wouldn’t write if there were other things that had first claim on my little bit of daily energy.
As someone who has Fibromyalgia, I can relate. Hope things improve for you soon.
Thank you! Fibro is no joke either!
I don’t think the need for affection ever fades, it is too human a need, written too deep within us. Sometimes my mum asks me how I can be lonely when my family are around me all the time, sometimes I am lonely for the myself for the way I used to be, for the parts of me that are starved of oxygen (sometimes literally), for the feeling of a man’s arm around me or the delicate beauty of a kiss. The longing never fades but as in all things illness forces me to adapt to shift perspective in a lot of ways to take the high road to find a way to do more than just survive….even if I live brightest only in my imagination.
Hi Chrissie. Wow. That’s very insightful. The idea of feeling lonely because of missing a former part of yourself is really fascinating. I think I feel that too but have never thought to put it in words. And loving brightest in your imagination is certainly something I can relate to. Thanks for sharing your thoughts.
Hey, it’s always good to know that someone understands, I don’t think anybody really can unless they’ve been ill and trapped like this, I have me/cfs among other things, that’s what I like about your writing it is so honest.
Thanks, Chrissie! You’re very sweet.
I absolutely love your honest writing! You capture desire and yearning so poignantly yet I find you totally inspirational and refreshing. Learning to cope with an illness and mental health is a long difficult process that forces you to seek out others who experience the same. You experienced something beautiful and you will soon again and although initially these people seem scattered and far-flung, once you find them the intimacy and friendships you make will draw around you like a warm bubble. Have a great day and thank you for sharing
Hi. That’s incredibly sweet of you! One of the things I love most about my blog is that wonderful people like you take the time and energy to write such thoughtful things. Virtual relationships of all kinds are pretty special.
Keep on writing and stay connected. I had a spell where I couldn’t leave the house (agoraphobia) so even though there was nothing physically wrong I became disconnected and so lonely. I joined twitter and it was my lifeline. Slowly i changed my thoughts and soon I was able to have a real conversation. Wanting to address my underlying issues led me to start my blog and reading and connecting with others who experience anxiety, depression, infertility and other visible/invisible illness’ has made me feel part of society and much more confident.
I love meeting people in all ways so hello and pleased to meet you 👋🏽
I’m so glad you were able to connect online. I too have found that to be very helpful.
I am so sorry.
I know the feeling of loneliness as well. Seeing as my boyfriend lives with his actual girlfriend of 12 years.
I hope things get better for you. And if you need anyone to talk to, I am here. Virtually, of course.
Hi Brooke. Thanks! That’s very sweet. It sounds like a heartbreaking situation, if he has another GF you’re better off moving on.
Keep in touch!
No problem 🙂 anytime, actually!
And it’s hard to move on. I love him.
I admire your honesty! I appreciate hearing your experience, heartache is inevitable when you are shut away from the world for so long! I hope that you and Jenna can stay friends. I miss friendship. My family are mostly autistic (bar my sis who also has cfs) so I miss having other ‘neurotypical’ people in my life who share the same shorthand. It’s hard to navigate sometimes.
I can’t imagine the energy it takes to experience romantic feeling for someone and all that comes with that mentally since being ill, let alone any form of break up.
Chin up Jameson mate, take it easy and lots of love from one invalid to another!
Thanks Jess! You’re very astute and kind!
Feeling intimacy grow with communication is amazing, but then the normal course of it is touch. I know so many people who do not talk about sexual needs, but are deprived of touch, Cuddles and hugs and hands massaging skin, jazz up the endorphins. Lack of that is singular. I think…do not laugh …that while you are getting stronger you might get a cat.. It has been shown that people who are alone and have soft furry bundles, do better. I do not have that situation, but over the years I have talked to many people, especially women, who are sick and alone and feel ugly or fat or some damn thing, but their saving snuggle is the cat or the dog. Are you allergic? This tripping illness can leave a person with PTSD, too. Animals help with that.
Hi Pat. That’s a good idea but my doctor thinks a cat or dog may contributed to me getting sick. So I guess I’m out of luck with that.
what a touching story. sorry for the sickness.
Thanks, you’re very kind!
Sorry about the dog/cat thing. Well, a parrot? Yeah..they are needy. Did you read the The Sound of a Wild Snail Eating
by Elisabeth Tova Bailey? She is horribly ill. It was a best seller – no kidding. I can dig a copy up for you.
Maybe a fish?
I’ll look for that book. I have trouble with text but there must be an audiobook.
Just read this J. As always, I’m blown away by your honesty. Beautifully written.
I’ve had my fair share of virtual relationships myself, so I related to some of this. So, years ago, I met a guy on Twitter who lived in Canada. This was when I was public and was thinking seriously about moving to Toronto. He started following me there and seemed like a nice enough guy. We would chat here and there, but I really never even saw him as an option at the time. He was one of those guys who never post pictures of themselves, so I assumed he must be an ogre or something. Besides, I had been badly burned by Internet dating and was just over all of it after a few really heartbreaking relationships. But I stubbornly kept trying to date and posted about my silly adventures. Eventually, he somehow figured out how to find my profile on OKstupid and kept asking me how my search was going.
I don’t even remember when or why I gave him my phone number, but I did and we instantly hit it off. I even talked to his mother. He was Eastern European, and my family is as well, so the banter was just really endearing to me. So, we basically got into this thing–with me totally not having it–but like quicksand…suddenly I was in a thing. Totally fucked. At first, it was great, but it became more and more apparent that we were just not a match. So after months of me distancing and being an asshole, I finally blew up and broke up with him. (He was prone to say really offensive shit about women, and I’d had enough). I think I was just looking for a way out, and it was very traumatic. I broke his heart. I was awful. Not my best anything.
I have this kind of unwritten rule that I don’t revisit love interests, but he was always sort of around–trying to be friends with me. And I’m a forgiving soul, so I eventually talked to him again. We finally had a chat on the phone. He seemed changed–like the shit I said had made an impact, and there was still this obvious connection. I’d always regretted how I ended thing with him. And once again, we were in this thing. I was moving out here, so it was complicated, but everything was really good for a while. Then he went to visit family in Europe, and we even did the whole Skype thing there–which was hard–but I noticed things were off and distancy. He came back and mentioned he had an out of town visitor coming–who he wouldn’t really talk about–and would be off with this person for a week. Something felt off about it. Needless to say, I found out his ex was visiting him. So I ended things with him, but remained friends–basically saying if you lie again, I’m out. He, of course, lied again. So, we no longer speak. And now, she’s having his kid and they live in two different countries. I could say more about that whole thing, but needless to say the anger is still there about what he did and the fact that he’s mad at me because I got mad. In any case, I’m actually happy for him–though I suspect he’ll never be happy. I realized very quickly after that whole mess that I was right to break up with him the first time–for the reasons I did. You live and learn.
So, yea…I feel ya on that whole dating thing. I think it’s awful probably for everyone, but much more when you’re sick and have complicated bullshit in your life. I still keep trying to date–because I am a hopeless romantic or maybe a glutton for punishment–but most days–I just can’t even. I do believe there has to be someone for everyone. I mean, Honey Boo Boo’s mother found someone. Certainly, we can, too.