Dear friends,
I hope you are all doing well. We seem to have jumped straight from summer to autumn here in the UK. Not that summer did much summering this year, so really the shift isn’t that dramatic. Usually September does a better job of being a summer month than August, but not so this year; 2024 is the year September has its autumn vibe figured out from the start.
I love autumn though, so that’s okay. It means Christmas is on its way, I can start wearing all my knitwear; and being stuck inside, huddled under a blanket on the sofa, on a bad fatigue day, doesn’t seem like such a waste.
I know I said I wasn’t going to write about long covid again, but… sometimes I can’t help it. It insists on finding new and unexpected ways to be the biggest nuisance. Fortunately, it’s not my writing that LC is affecting this time (I’m having a blast writing The Hanahaki Club—if you missed the first episode, I’ll link it below); it’s my love life. Or, to be more precise, my attempt to get a love life.
I don’t know what possessed me to sign up to a dating site. I swore off those about six years ago, but, it happened—perhaps because I got swept up in my first time writing romance? There are so many reasons why this is a bad idea for me. I could write an entire academic paper on why online dating is the worst thing that I, personally, could ever do, but I’m saving those thoughts for my future therapist. Anyway, here I am with a six-month subscription to a dating app, so I’m committed to at least trying to make something of it.
To be fair, the first week on the dating app exceeded my extremely low expectations. I felt optimistic, in a good mindset for meeting someone new, and, to be entirely honest, kind of smug about the positive response my profile was getting. Likes are good for the ego… who knew? But once I actually started messaging a couple of guys, I realised that the biggest hurdle to finding romance, or even just getting a date, wasn’t going to be my innate social awkwardness, my judgemental attitude to poor basic literacy skills, or my nerdy humour… it was going to be long covid. Because of course.
So…
Long Covid… Romance Killer?
Here’s the problem: no one understands what it means to have long covid.
Well, ok, not no one. People with long covid understand. People suffering with any type of chronic illness understand. Anyone who lives alongside someone with long covid and has witnessed its effect first hand—those people understand. But most people, who have no experience of long covid, or any other chronic illness, don’t understand. How could they? It’s really not their fault. The big problem with long covid is that it’s been relegated in public discourse and thinking from a condition caused by a virus that caused a global pandemic, brought normal life across the globe to a screeching stop and killed millions of people, to something a little more inconvenient than the flu or the common cold. When I tell someone I have long covid, I can often read two responses on their face: first, scepticism. Is long covid even really a thing? Isn’t it just in your head? Second… well, actually, I don’t really have a word for it, but I can see them thinking ‘You just need some more vitamin C and a tougher backbone, girlie. Think positively and I’m sure you’ll be right as rain in no time’… so, a combination of patronising judgement and lukewarm sympathy?
I must mention here that not all people react that way. Some people are very empathetic and seem to appreciate exactly how big an impact long covid has on a person. But these are usually the people who have been there themselves, or who know someone who has, or who work in the medical field.
Either way, when you’re reading a profile on an online dating app where people are answering (in the most literally way sometimes) questions such as: what do you carry on you at all times? (keys, wallet, phone—BORING); what TV show or book would you cancel dinner plans for (I would never cancel dinner plans because I’m an upstanding guy—BORING) and what are the three things that make for a good relationship (sex, great sex and lots of sex—BORING and also, eww, save it for at least the third date, man), it’s difficult to know—amongst all the profile pimping—what type of attitude someone has to long covid.
No one, of course, has ever been mean to me (not to my face, at least) about having long covid… unless you count the time my employer put me on stage one of the absent disciplinary procedure—which, once the OH report straight up said ‘this case almost certainly falls under the Equality Act’, they back-tracked on VERY quickly and have been very nice and accommodating ever since. What people do tend to say is: ‘Oh, I’m sorry, that must be hard for you’, and they mostly mean it too. But that doesn’t change the fact that they don’t really comprehend what having long covid means: the way it completely re-writes your life, your goals and plans, even your identity; how it changes the way you have to approach the basics of daily living; how it costs you relationships, isolates you from community and forces you into a place where you are constantly fighting to be heard, understood and given the support you need. They don’t understand the daily gymnastic you have to go through just to manage your symptoms; the psychological, emotional, existential and spiritual toll it takes and how every symptom comes with its own long list of inevitable side-effects.
But enough of long covid. Let’s get back to the dating issue. Let me explain the whole dating-with-long-covid problem by telling you about Angus1.
ANGUS
Angus was really nice— in that he wasn’t a woman-hating psychopath, your regular psychopath, or one of those guys whose only profile picture is a topless mirror-selfie in his bedroom, with the glare from the bare bulb light reflecting off his sunglasses. We matched, he sent a message saying ‘hi’, I replied and we started a decent conversation. Pretty early on, I mentioned that I had long covid and he gave me the ‘Oh, I’m sorry, that must be hard for you’ response and asked how long I’d had long covid for. I hadn’t, by the way, shoe-horned the long covid into the conversation. It came up as the honest answer to a question he asked and since I don’t like talking about it too much, because I don’t want to be That Long Covid Person I kept the details brief: I’ve had it for two years, I’ve recently got back to working three full days a week and I’m learning to manage my symptoms better; I’ve got a way to go, but I’m optimistic.
Angus, it quickly transpired, was someone who did not understand long covid. And it turned out that, ultimately, this was more of a problem for him than it was for me.
It started with red flag number one: a response to my comment that I was proud of my sister, who was training for a half marathon and how I was also jealous, because I really missed being able to go for a run. Angus’s response was ‘I’m sure you’ll be running a 5K in no time!’ which niggled me a little, but which I just took as him trying to be positive and encouraging. And I’m sure from his point of view that was exactly what he was going doing. The trouble is, if you know anything about long covid and what it means to have chronic fatigue for two years, you’ll know that running a 5K ‘in no time’ is not a reasonable expectation. My physio has advised that I only do 5-10 minutes of gentle exercise a couple of times a week: that means a slow stroll, or a few stretches, or the three strengthening exercises she’s given me where I’m only allowed to do three reps of each until I find my base level. And once I find my base level, I’m allowed to only do one more rep, or one more minute, until I find my new base level. My physio also made sure to emphasise that exercise should be the first thing I drop from my routine when the fatigue gets bad, and the reality is that most of the time, I don’t have any energy spare in the week to do any exercise: work, food shopping and keeping on top of the washing up tend to use up all my spoons2. So a 5K run is, currently, a distant dream. If I’m able to jog for 5 minutes in a year’s time, I’ll be ecstatic. I’ll celebrate by getting my gait analysed and buying a pair of trainers I absolutely cannot afford.
But Angus didn’t know any of this, so I gave him a pass.
After about a week, Angus and I ended up video-chatting, which was lovely. We had a really good conversation, he was easy to talk to and an interesting person. Afterwards, he messaged to ask if I wanted to swap mobile numbers and continue communicating via WhatsApp. I agreed, he started texting me right away and we had a nice back and forth. This is where red flag number two popped up. Evenings are when my energy is at its lowest. There aren’t many spoons left by 4pm. I don’t cook in the evening—I prepare a batch meal every weekend so I only have to microwave my food during the week. If I have energy, I might wash up but usually it gets left for a day off. I have a curfew too. I have to practice good sleep hygiene to prevent developing sleep inertia3 again. So, I start winding down for bed at about 8pm and I’m in bed by 9pm. The first time we were chatting and I said I was off to bed soon, Angus’s reply was ‘So early? The night is young!’, which was fair comment, because we’re in our thirties and 9pm is when most adults are just settling down to watch two hours of their favourite murder mystery. I wasn’t upset by the comment, I just explained that long covid is like a very strict parent and I had a bedtime to keep, but we could chat in the morning. He was cool with that, and I felt so relieved.
Until the next time, when we were texting and I had to go to bed. Again, I said goodnight and he made a comment about how early it was and I had to make a quip about needing a full night’s rest or I’d be paying for it the next day.
And this is when my paranoia started to kick in.
I began to realise that this guy really didn’t understand what having long covid meant and I was going to have to explain it to him. But how was I going to handle it without putting him off, coming across as a cry baby, or looking as if I was trying to win the sympathy vote? Was he going to get fed up if I kept explaining why I couldn’t match his energy? Texting a complete stranger is tiring when you have fatigue. People forget that fatigue isn’t just exacerbated by physical labour, but by mental and emotional labour too. After doing my job, socialising uses up the most spoons, and, even though I enjoy it, I pay dearly for it in the days that follow.
But since Angus didn’t seem put off yet, I dismissed my worries and did my best to stayed as engaged as I could without wearing myself out.
Soon, Angus asked if I fancied meeting up. I was keen, but my worries surfaced again. Looking at my diary, I wouldn’t be able to meet up for another two weeks when my three-day weekend came around. I’d have to ask to meet in the morning or early afternoon, and we’d have to keep our meet up to no more than an hour and half, because that’s all I could reasonably manage. Would he be happy to come my way? I live in a village outside the main town—would that be asking too much? If we met somewhere halfway, I’d have to insist on a very specific location so that I could get parking within walking distance of a café and in a place that wasn’t too hilly. Was I going to sound like a fussy, high-maintenance, princess? Would he start thinking the long covid was just an excuse to be controlling and have things my way? Would he think I was just being lazy?
Did I mention that one of the side-effects of long covid is anxiety? That everything that was once so simple becomes a complicated mess of ‘what if’ worry?
In the end, none of my worries about arranging a meet up mattered, because Angus cut his losses before then. It happened because my best friend took me out on the Friday before I went back to work after the summer holidays. She picked me up, drove me somewhere for a change of scenery, and ensured I had plenty of opportunities to stop and rest throughout our time together. It’s something we had pre-planned, I’d made sure I had time before and after to rest, and she’d assured me that I could cancel any time if I felt it would be too much. I knew that I’d need the whole of Saturday to recover, and I gave Angus a heads up that he might not hear from me until late on Saturday. He seemed fine with that, and even texted me during the day on Friday to ask how my day was going. Late on Saturday afternoon, I message him, we had a very brief exchange because he was going out to the pub with some friends to watch the football. I sent him a last message before he went out to the pub, he reacted with an emoji and then never contacted me again
And to be fair to Angus, I could have reached out again, and he might well have replied, but by this point I was actually relieved to not hear from him again. Because the whole thing had been just too. damn. hard.
Here was the problem: Angus didn’t understand what it really meant when I said I had long covid. And so he couldn’t understand why I couldn’t match his energy. Either he thought I wasn’t really interested and was using long covid as an excuse for keeping my distance. Or he thought I was lying or exaggerating my symptoms for sympathy or because I was lazy. Or he just decided that he didn’t have the capacity to take on someone with a chronic illness. And I don’t really blame him for any of the above. He didn’t know me. We had one, hour-long video call, and that was it. He probably thought I was a time-waster.
I bear no hard feelings towards him, but I think he was pretty upset, because he very quickly unmatched with me on the app and deleted our chat like I was a poisonous cat-fishing weirdo he’d had a lucky escape from.
Oh, well.
Long covid: 1; Romance: 0
Long covid vs. Romance
On the one hand, I feel a little sad about how things turned out with Angus. It made me realise just how much long covid affects every aspect of my life. And in other circumstances, Angus and I would have probably met up, had a nice date, and even if it hadn’t gone any further than that, it would have been a positive experience to enjoy and remember going forward.
On the other hand, I’m relieved, because there were a couple of other niggles that had made me uncertain about our compatibility and now I don’t have to worry about them anymore. For one, he never actually asked how long covid impacted me or what my symptoms were; he just ignored it or brushed it off when it came up… which, honestly, is my right, not his. He did the same when I told him that I’m a writer and have a newsletter—he really wasn’t that interested; instead he made a patronising comment, as if he thought this was just a new hobby I’d recently taken up, instead of actually asking me anything about it. And then he assumed my main reason for wanting to visit Japan was because I wanted to go to Disneyland; and practically scoffed: ‘Why would you do that?’ when I told him I was learning Japanese.
If there’s one thing that narks me off the most, it’s having my little nerdy interests demeaned. Self-depreciation is MY job, thank you very much.
The whole experience has made me re-evaluate my needs and boundaries, and has made me realise that, yes, whilst I don’t want long covid to define who I am, I can’t just ignore the very real role it plays in my life. To ignore it would be to ignore the struggle I’ve been through for the past two years; the triumphs I’ve had, however small they may seem; and the growth I’ve experienced because of being chronically ill.
I’ve DEFNITELY had to re-think my approach to dating. There are things I need to figure out before I go any further:
When do I mention that I have long covid? Do I put it on my profile? Do I wait a bit longer, after I’ve had a face-to-face date? Do I not mention it at all and just stick to my health boundaries, without justifying them, and let the chips fall where they may?
If/when long covid comes up, how much do I explain? A date is supposed to be getting to know me, not long covid. I don’t want to become a long covid information centre, or come across as obsessed with my condition, because I’m really not: I have a rich and full life in spite of long covid—but it is a life that has limitations, and I have to live within those limits if I want a chance at recovering.
Is dating worth my time and energy? Is it still too soon? Should I wait until I’m fully recovered—whenever that might me? Or should I plough on regardless and trust that someone out there might actually get it when I say I have long covid; might care enough to ask the right questions, might come to like me enough to not be put off by my situation?
I still don’t have the answers to those questions, and I’m honestly relieved that the app has gone quiet whilst I figure it out and get back to my new work routine. Either way, I’ve paid for another 5 months, so I might as well keep my options open and see what happens next. I’ll probably figure it out as I go along.
The good thing is that this isn’t exactly a life and death situation for me. I’m happily single anyway—if anything, online dating makes me appreciate even more just how wonderful my life is right now, with the people who are currently in it and who do understand my situation and have been supporting me through it from the start. My life is already brimming with love and romance, just not the type so idealised by fairy tales and Hollywood.
And I know that there are people with long covid who have found romantic love in spite of their illness. So, yes, long covid makes online dating more complicated than usual, but I don’t think it’s killed romance completely. If anything, it just makes romantic love all the more precious when it is found.
If you’ve made it this far, thank you for letting me get this out of my system. I don’t enjoy writing about long covid, but if doing so helps raise awareness of the condition and the reality of living with it, even in a really small way, then it’s worth it. I also want anyone else out there with long covid or any other chronic condition to know that they are not alone. You are seen and you are understood.
As always, if anyone ever has any questions or wants to chat, I’m here; and if I don’t have the answers I can probably point you in the direction of someone who does.
Thanks for reading, friends! I hope you’re enjoying the The Dying Fall and/or The Hanahaki Club. A new episode of each will be heading your way this weekend!
If you haven’t had the chance to check them out, check out the index pages linked below.
PJ
Not his real name.
Spoons: a term taken from the Spoon Theory, which is a visual tool for understanding how a person with chronic fatigue has a limited supply of energy each day. Each task, such as washing and dressing, takes up a certain number of spoons. Once the spoons have been used up, they have to be replenished through rest before further tasks can be completed.
Sleep inertia is when you sleep too much and sleep stops being restorative and actually makes you more tired. To combat it, you should make sure to go to bed and get up in the morning at the same time every day; and keep naps to no more than 25 minutes. It’s really hard advice to follow—you wake up feeling like death for the first week or so—but it does work.
I’ve often thought I’d like to be like Worzel Gummige (sp?) be able to change my head when my mind’s whirring, for one that doesn’t think so much. Living with a long term condition can make you think there is no escaping from it. It just won’t shut off and you feel obliged to apologise for the way you are and for the lack of participation or inclusion you are able to mete out. Fighting yourself is not the answer. I’ve discovered how to be happy as I am and to stop apologising for what I can’t change. Most people aren’t invested in us to notice every nuance we fixate upon. Most people don’t notice half the things about us as we think they do. Men mostly don’t register stuff like women do and they’d think us barmy for attributing such thoughts as coming from them. It’s easy to have both sides of a conversation putting words into their mouths, but they’d be horrified that you attribute it to them.
Today my neurophysio said men don’t think like that, when I was expressing frustration over not being able communicate effectively a simple, logical task which made complete sense to me but was received with a blank expression as if I’d lost my mind. She’s not the first to hold that opinion, she is 36 and single an incredibly lovely young woman, fun and intelligent and very relational and caring. Not sure why we woman want so much from men when we’ve got so much going on for us already. I wouldn’t focus on anything other than that, you are a beautiful intelligent woman, greatly talented and well respected, full of life and an inspiration. Speak without words, no need to explain yourself, just be you. If a picture paints a thousand words than one look at you will speak volumes to any man out there who recognises a work of art.🥰