Long Covid & Identity

In which Hannah and Katya set out to discuss the impact that Long Covid has had on their identities,  and briefly stray off topic to complain about periods and reminisce on university crushes.

We want to hear about your experiences! What do you do with your bounded energy?
Email: boundedenergy@gmail.com
Twitter/Instagram: boundedenergy
Transcripts available on our website: www.boundedenergy.co.uk

Theme Song: Harry Gould
Artwork: Ellie Atkinson

Transcript

Katya  00:31

Hey there Katya here. Welcome to another episode. So for this episode, Hannah and I are talking about long COVID and identity. And I want to give you the background as to why we picked this as a subject. When I first started the podcast, I only had long Covid just over a year. I feel like that first year between getting long COVID and making the podcast, I spent that really getting my head around the fact that I had this chronic illness. The podcast is roughly a year old now. And in that time I've been slowly exploring all the ways this illness has shaped me. I've changed so much about myself because of this illness. I've changed the way I work. I mostly work from home now. I've changed where I lived, I now live a 10 minute walk from my office so that on days when I'm well enough, I can go in and see people.Long COVID has changed how I spend money. My savings are not what I hoped they'd be at nearly 30. But I've become comfortable with paying for cabs to cut a walk short, and I accept that the cost of my rent. While it might seem insane to somebody else, to me is just the cost of an easier life. I changed hobbies, I've stopped dancing and walking. And I took up art, and lately the guitar. And while all of these changes have really helped me to live better with my illness, they also enable me quite often to forget that I'm ill.

Having now changed so much of of my life and what I do, I'm finding that I need to tell people about my long COVID less and less, I don't miss my art classes when I'm sick because it's around the corner, and it's a sedentary activity. When I don't have the energy to leave my house, my guitar lessons are on Zoom. I've just come back from the most incredible adventure in Africa, which was organized by some of my closest friends who made sure that it would be accessible to me and for most of my holiday, I completely forgot that I had long COVID I was just another tourist in a safari truck drinking Coke and watching elephants. 

Now, I'm not saying this to boast. Im saying it because I want to share that something I've been thinking about lately is how much happier I am when I'm not strongly identified with my long COVID. That's not to say I don't consider myself as having long COVID. That's not to say I don't sometimes feel overwhelmed by my limitations. I do. But I've just noticed that I no longer feel like my chronic illness has as much to do with who I am as a person as I did at the start of this journey. 

So much so that there are now spaces in my life where no one knows I have long COVID and I really enjoy the escape. In my Spanish classes. For instance, I didn't begin with ‘hola me llamo Katya y el tengo COVID persistente’ I think that's how you say it actually haven't said that out loud. Partly because my Spanish is not good enough for me to bring someone up to speed, but also because there are 100 other things I'd like to share about myself with my classmates first. When I can take someone through the Twilight fanfiction that I'm currently working on in my spare time, maybe then I'll touch on my chronic illness, but I just consider long COVID to be the least interesting thing about me. And it doesn't really impact me in my Spanish classes. Well, I'm one of 15 people who all have problems. Is it long COVID brain fog? Or do I just not know the past tense for ‘estar’? We will never know. And sometimes I like not knowing.

 Anyway, I realized I was having these thoughts and sort of panicked, and I wanted to talk to Hannah about it because the truth is I was feeling guilty. I've made a whole podcast about having long COVID Once I finally started saying aloud, I have long COVID I'm pretty sure I told everybody who would listen. Who am I to confess that now, in my personal life, I spend a lot of time doing what I can to pursue other parts of myself. 

Okay, so these were the thoughts that prompted this conversation. This is an episode in which I'm particularly interested in your thoughts. So let us know if any of this resonates with you. You can get in touch by emailing us at boundedenergy@gmail.com. The podcast begins with a usual preamble. No one's ever complained about the fact that I include our chit chats before getting into the nitty gritty or as far as we ever do that. So this is pretty unedited. Anyway, I hope you enjoy the conversation.

Hannah  06:11

Hey How are you? Good.

Katya  06:12

Good It's so good to see. I feel like it's been ages.

Hannah  06:16

It has been a long time.

Katya  06:18

I'm it's I'm sorry, I'm late. I was playing League of Legends with my brothers. I kind of deliberately failed, because I deliberately, I lost the game for us, so that we wouldn't be too late.

Hannah  06:33

I'm honored! what a sacrifice!

Katya  06:35

Yep. I like ran into the middle of some battles that I like, know way better than to get too close to kind of kamikazed it. 

Hannah Nice. 

Katya How are you doing?

Hannah  06:49

I'm okay, I've, I finished up work on Thursday. And then I've got a week off of annual leave. But you know what it's like, like the first few days of holiday. It's like, my body is relaxed. So then I've kind of crashed a bit. So yeah, I can kind of feel I've just taken some Nurofen because I can feel like the aches are setting in like around my joints and stuff. So yeah, hoping that this will just be the first few days of like, just being extra tired and painful and stuff. And then with some rest, I'll perk up by kind of midweek and then have a few days of feeling… not awful.

Katya  07:34

Yeah,

Hannah  07:36

Before I go back to work again.

Katya  07:40

Yeah, that really resonates me because I had my 10 days holiday in Namibia. And it took it took like three or four days for my anxiety and like acute symptoms to relax a little bit. So I would say I had like a full week of just like heaven, and like really light symptoms and just holiday bliss. And then came back and my period started on Thursday. And… Like it's been like five months since coming off the pill and I … just like periods are horrendous. Yeah, today is a better day than yesterday. But I'm the same like feeling quite nauseous and just exhausted, 

Hannah  08:29

Are you thinking you might go back on the pill? I can't quite remember why you came off it in the first place.

Katya  08:33

I came off it because I'd been on it for 11 years. And I read a book about how it can make you more anxious and has like a bunch of other side effects. 

Hannah: Right. Okay. 

Katya: And since coming off it I feel like I feel like I experienced like when I'm not on my on the pill. Long COVID symptoms are better. My mental health is really good. And then around my period, I have this dip where COVID symptoms are terrible. My mental health is insanely bad. I've learned I cannot make any decisions over that…. But then it but then it goes back up to being quite tolerable.

Hannah  09:15

yeah. Okay, that's interesting. So like, maybe being on the pill, it makes your mental health more consistent, but consistently at a lower level, whereas it's a little bit more ups and downs without it. That's interesting. 

Katya  09:32

And like consistently worse than normal, but never as bad as it is now during my period. Yeah.

Hannah  09:38

Yeah, no, I feel you. I am. I hde my period like maybe like a week ago. And I was just like, the night before I started bleeding. I just felt really really anxious but for no reason. I couldn't pin it on anything. I was just like, had this like horrible churning feelings inside me. And I was trying to find an excuse, like, why am I feeling this way? And in the end, I was like, I always do this. I'm always like, Oh, what a mystery. I'm feeling so shit. And then obviously I start my period the next day. So yeah, in the end, I was like, Okay, I think it is just PMS. But that doesn't make it go away. Yeah,

Katya  10:20

I get like escapism fantasies as well. Of like, everything has to change. Like, I have to quit my job. I have to move I have I 

Hannah  10:30

Yeah, I was saying this to Chris, because we went on, like a short walk because I was feeling so caged and anxious. And I was just saying to him, like, Oh, I just want to like, I want to tap out, like, I want to press a button and just make everything stop, make everything change. And yeah, I feel I felt sort of, kind of trapped in my own reality, which is crazy. Because it's like one though, like, I have a good reality. I'd pick this reality over many other realities. But in that moment, I just want to escape and everything feels like crushingly overwhelming.

Katya  11:06

Yeah, it does. And it's just so strange now, like, having had this like three or maybe four times to realize that, like, once a month, I will experience thoughts that I really should not act on. Yeah. Yeah, really, like this should not, I shouldn't make any major life decisions.

Hannah  11:27

Period. Yeah, once a month, I have a major existential crisis. I want to just push my life off a cliff edge,

Katya  11:38

you could ruin your life, like I could see myself in five days quitting my job, paying extra to bring my rent cycle to a close, booking a plane ticket to like, some foreign country. And then like, my period would end and I'd be like, oh, gosh, what am I going to do now? 

Katya

Alright… how do you want to do this? I made a bunch of notes, which are illegible? 

Hannah  12:07

Umm, well… I made some notes as well. We were going to talk about how our identity has formed, like changed or stayed the same in any way since being ill. And I think when you sent suggestions for like, talking points on this, one of your questions was like, Do you consider yourself to have a disability? And I was, in my mind, I was just like, 1,000%? Yes. And then I went geeky, and I looked up the ACAs definition of disability, which is having a physical or mental impairment that is both substantial and long term, impacting your ability to carry out normal day to day activities. And by long term, it's at least 12 months or for the rest of your life. That definition, I was just like, it's just a no brainer, like, I have a disability. Of course I do. But I feel I think I'm very comfortable with that. I don't know if it's because I have worked in healthcare for so long. And my whole job was just working with people with disabilities. I don't know, when you work in health care, you realize just how common physical and mental illness is. In, in humanity. Like, it's just everyone has got physical and mental ill health of some kind, even if they don't have it now, though, they will have it in the future. So I don't know. I don't personally have. I don't have many reservations around that. But do you feel differently?

Katya  13:37

No, but I feel like my feelings have changed. I came across the same definition as you for disabilities, and reading it now. I was immediately just like, Yes, I 100% view long COVID as a disability. And like, if I were ever to if I were to apply for another job, that first question of like, do you consider yourself as disabled? I would tick Yes, as well. Yes. But I know for a fact that I wouldn't have been comfortable with this a year ago. And I actually remember, I think in our first ever episode, we spoke about badges for invisible illness and spoke about, you know, should I get a badge to signify having an invisible disability? Yeah, so that things like public transport are easier. And I think we were both quite uncomfortable in that conversation with the idea of it. 

Hannah: Yeah. 

Katya: And I definitely would not have described myself as disabled one year into long COVID

Hannah  14:40

Actually, now I think back to it. I think in the early days, I sort of thought I didn't know if I qualified. I think it was that thing of like, I don't know if I if I am that category. Is it presumptuous for me to try you know, try and join that community when I'm disabled to I feel a lot more comfortable in that space now? Yeah, maybe I think in the early days when we were still trying to adjust and accept it, and there was a lot more unknowns, you know, I didn't know if maybe in the next six months, I would be miraculously better. I didn't know that this was a temporary thing. Whereas I think now, I have accepted that like, yeah, absolutely. This is a long term thing. And if it doesn't last the rest of my life, like, it's definitely, I'm now living, kind of accepting the fact that this is likely going to be years of my life.

Katya  15:32

I think you're right, the timescale is all the difference for me, I think, going from a period of I am, you know, Katya, from 2020, with a temporary sickness to I am a person with a disability and like that, I think subsuming that as part of my identity has taken some time. It's also taken some time to completely rid myself of the stigma, because I think I used to think of somebody as disabled. I thought that you had to meet, like, very, very visible physical signifiers to claim that word. So missing a limb or paralyzed in some way. Something as vague as chronic pain, chronic fatigue. I think my prior self might not have recognized as that as a disability as a disability. I think that's just my total ignorance. Hmm. Yeah, yeah.

Hannah  16:36

I think it's just having quite a narrow image in your mind, isn't it of what disability means? Yeah, and actually, I think that was a bit of a, like, in that very first episode, where we were talking about those. I think it was the green lanyards with the sunflowers on. Yeah, it was kind of wrapping my head around the whole hidden disability thing and thinking, Oh, wait, hang on, maybe, maybe that's me. Yeah, so I definitely expanded my mind around the term. In the early days, for sure. One thing I was thinking of, in terms of identity is that, like, there's certain parts of my identity prior to long COVID that I have had to let go of, but then there are other sides of my personality and my identity that I have really, like leaned into, because I was trying to think like, am I a completely new and different person I was, I don't think I am, I think I've just leaned into certain aspects of me more, you know, I've had to let go of certain things like you know, pole fitness and yoga and walking and my physical hospital job and everything and, but stuff that I am, I have embraced a lot more, like different types of interests and hobbies are still very much a part of my personality, I've just, I've just been able to put more invested in them a lot more. And stuff around like, the social side of me, like, I think I'm, I'm lucky in that I have always been a very introverted person anyway. So I have really been able to lean into that and embrace that. And just really accept that as part of myself. And now something that my fibromyalgia slash long COVID necessitates, whereas before, it was just a choice very often, but then I, but I'm, but I've always felt lucky that I am that personality, because I know that people who are extroverted, or people who really get a lot of a lot of their joy and energy from being with people. I know, it must be so much more challenging. Yeah, whereas I can just like really embrace my love of being on my own. And I don't, I don't, I don't loneliness is just not something that I experience very often at all. Yeah, but I know you're different, aren't you? 

Katya  19:06

I’m happy. I'm so happy for you. (both laugh)…something I was thinking about before like, is chronic. I wrote out like a list of like, how I would describe myself a list of identifiers. And chronically ill was like, really no down. It was 16th. After you know, my gender, my age, being a woman, being a writer, being in financial services, being a friend, a girlfriend or sister, like chronically ill was 16. But I struggle with knowing if it's like a new identity, or if my illness is just like a dimmer switch on other parts of myself. I'm naturally very sociable. And so for me, chronic illness turns that way. Are you down when it's flaring, and like, I am naturally very physically active. So chronic illness turns that way down. But then I've always been a massive reader. And chronic illness has just dimmed that, the tiniest bit, such that when I'm reading, I don't feel like I have long COVID. But when I want to dance, I have long COVID like a brick wall in my face. And so maybe for you having always been someone who is who needs a lot more time alone, and who kind of gets more energy from that, like…

Hannah  20:34

It’s kind of dialed that up.

Katya  20:37

Yeah, yeah, it kind of impacts you less.

Hannah  20:42

Yeah. Yeah, it does.

Katya  20:45

But then it also makes me think about, cuz my biggest symptom is fatigue. Sometimes I think about like sleeping, like, you know, when you go to sleep, or you're tired, you're still yourself, you're just unconscious, or slightly less bright? Like, I feel like with my symptoms, I can't decide if I’m my old self just less of the time. Or if I'm quite new and different, because, like you said, I've leaned, I've leaned into certain of my old habits more such that they now represent a much greater part of my time,

Hannah  21:25

I guess, our identity is never fixed is it? So I suppose one way you could imagine it is that having long COVID slash Fibro has, like, it's shaped my identity in a different direction, maybe to where it, it might have gone otherwise. Like I remember with my, like, I was so into pole fitness. And like that, I was thinking like, you know, maybe one day in the future, I could be like entering competitions and stuff like that. And it's like, I've gone in a different direction now, like I've learned into a different side of me, like really into reading, like playing the piano. I've just like listened to so many bloody audiobooks, like acquired so much knowledge that I've just gone off in a different direction. And that's been shaped by the fact that I have fibromyalgia. I think the other thing I would say is that, again, the the way that Fibro has just like, affected my choices, or it's just kind of entrenched things, beliefs, or decisions, like I remember, before I got long COVID, I was quite torn around the idea of am I going to be a mother in the future, am I going to have kids and since having fibromyalgia, and knowing that this is a, you know, a long term thing that I'm going to be living with for potentially years, you know, and I'm 30 now, and it really has helped me come to that decision that like, I don't know, unless I wake up in one day, and just have some, like, absolute burning desire for kids like I am, I'm just not going to pursue it. And I'm just gonna, I'm really happy not being a parent, in my lifetime. But that's, that was a really big decision to come to, but I can't lie, like having the fibromyalgia has been one of the factors that's made me decide that for my life, but again, I'm lucky, you know, like my personality that introversion that like desire to not have kids, you know, that all kind of lends itself to living with chronic illness. Whereas if you are a person who has very different instincts, like if you really desperately want to be a mum or want to be a dad, and then you get sick, like that is a much more difficult adjustment to make, and perhaps a more painful decision to come to, or, you know, a decision where right I want to be a mum, I prioritize this, this is a part of my future identity that I'm not going to give up. But then that might mean that you have to let go of other things in your life. Because I don't know. I just don't know how I don't know how people are … live with chronic illness, and are parents and then re everything else that life foist upon you. 

Katya  24:17

I'm now I'm having the same slow process. Like I said to Matty, do we want to have children, because we're, you know, were turning 30 as well. And yeah, and his response was like, I don't think at the moment you could handle having a having a kid. And he said this to me, you know, on my like, fifth day of lying on the sofa, struggling to really do anything. It's that... It's that strange thing of okay, well, like if I were to have children, my vision of being a mum would be different. I wouldn't be taking them to the park and like it would be a different style of parenting Right? Like they would need someone else to exercise them and come home to, to myself. So it it… I guess it changes everything doesn't it changes your sense of the future. Yeah. And I think we spoke about this before, right? That idea that your identity is so fixed and that things are so certain. And I feel like in Namibia, I've just been on a safari holiday, Hannah, which was absolutely incredible, because most of it was seated. 

Hannah  25:35

the dream. 

Katya  25:36

Yeah! I was in bliss! I was kind of thinking How are all these able-bodied people fine with like getting off a nine hour flight and then sitting in a car for 10 hours, but like no one complained. And we had a guide who was local to Namibia. And he had been explaining to us one day on about the drought, because they were at the end of their rainy season, and only a quarter of expected rainfall had fallen. And so we were seeing all of these beautiful little creatures, babies, baby zebras, baby giraffes, and just realizing that most of them wouldn't make it through the oncoming summer. And we had experienced that one day. And the next day, and I remember that night just looking at the sky just like Please, God, let it rain, I haven’t experienced that feeling of just everyday, please let it rain. And then the next day, my group did a little walk up some dunes and I couldn't do the walk. So me and the guide just took a flat route. And I had to just tell him that I had this illness, long COVID, which meant that I couldn't do this book. And he said to me, this world is changing. We must all adapt.

Katya  26:51

And that was all he said there was no like, oh my god, I'm so sorry for you, it was just this huge acceptance, that everything's changing all the time. This world is so fragile. We're living in a you know, we were in a country where everybody's future is uncertain. You know, not just the animals, but all the people who are employed by Safari and and I don't know it kind of like, normalized this illness. Yeah. And I find that I am happiest when I am not too identified with my long COVID I felt this enormous sense of relief of like, oh, yeah, no one. Nobody can predict or guarantee their next 10 years.

Hannah  27:42

Yeah. Yeah. That's so profound, that like, really simple sentence of like, the world is changing. We must adapt. Yeah. Yeah. And I completely agree. Like, the less I can think about and dwell on my long COVID Like, the better I feel, which is why I think it's so important to really lean into other sides of who you are. And still make sure that you're like, you have space to like, be you and be a person and not just be your illness every day. 

Katya  28:19

Yeah, I'm I'm rereading Portrait of a Lady by Henry James. We did it at uni. 

Hannah  28:26

Oh I love that book, 

Katya  28:28

Do you remember professor ____, the lecturer?

Hannah  28:29

Yeah I do, actually. Yeah.

Katya  28:30

I remember him speaking on it. And I obviously hadn't read it in time for the lecture. But I read it afterwards, because I remember him saying it was his favorite book. Oh, that man was such a legend. 

Hannah  28:42

Meanwhile, there's me sitting there with my like, highlighted copy. Like first year in uni where like, everyone was just getting drunk for a year basically. The guy who was teaching on Bleak House, I remember him saying like, Who here has read Bleak House? and then like me and like three other people put their hands up! Bleak House is massive book its huge. 

Hannah  29:14

I’m just a massive nerd! Well, I also like I was so I'm so afraid of failure that I go like really OTT? So I think I had read Bleak House before I even started the course because I saw it on the reading list.

Katya  29:27

Jesus Christ Hannah. Yeah, and I had such a crush on professor ____. I remember meeting him at the train platform in my third year and I wanted to tell him how much I loved his lectures, but because I fancied him so much I was physically trembling because he's like… it was like meeting an icon

Hannah  29:49

I was gonna say I fancied one of my one of my tutors. He specialized in like Renaissance literature. And like all he had to do was like, you know, really compliment some of my essays and I was like, oh my god, can we just get married, please? And just like live in a library for the rest of our lives?

Katya  30:11

Not like that lady. Remember, we had that lady who used to print off her lecture and give it to us. And then she would stand at the front and read her lecture.,

Hannah  30:21

Yeah  we had some really, really poor lecturers

Katya  30:26

We were like full time readers. It's like, I can read this, Yeah, twice as fast, like, yeah, ten times quicker than you can speak. Oh, yeah. My point is in Portrait of a Lady, there's a character called Touchett who has a chronic illness. And in one page, it like describes his years of illness. And then it just goes back to him as a character with his own interests and ambitions and relationships. And like, he has this bigger role to play.. And it was just reading it made me think of how you know, I, I personally feel so much happier when my sense of self is not just my illness, but kind of includes all of my other interests and skills and relationships. I go to a weekly Spanish class, where no one knows I have long COVID, and sometimes I feel a little bit in disguise, huh? A little bit like, Ah, you because they just see me as I at my best. Right? Yeah. Yeah, I also always get really dressed up and like, put on my colorful eyeshadow. And yeah, my I literally wear my best clothes to my Spanish class.

Hannah  32:04

Well, you know, that's so nice. I mean, you're, you're deliberately You're not lying, you're just deliberately choosing not to share that aspect of yourself, because you want to focus on being that other part of yourself. And yeah, yeah. It just, I think it goes to show that there are times when having that label is really important and really helpful, like, you know, occupational health purposes for work and stuff like that. Then there are times where it's like, I don't need, you know, I can just, I can ditch that label for a while, like, I don't need it today. Like it's not, it's not going to help me in this situation like I can do without it.

Katya  32:44

Yes, a great way of phrasing it. I don't need it today. Because like, for my Spanish lessons, I don't need it. And I don't want to have to even think about it. Yeah, think about it or worry what other people are thinking about it like it's okay, if someone doesn't know everything about me

Hannah  33:05

I agree. Sometimes you just want to focus on other parts of yourself.

Katya  33:08

Yeah. Which of which are no less valid? 

Hannah  33:12

Exactly. Yeah,

Katya  33:14

I want to be like, Hi, I'm Katya. I'm 29 and I have long COVID 

Hannah  33:19

Yeah, I just I don't want to be one of those people where the fibromyalgia or long COVID is just like, my entire identity. And just like everything that I am just gets subsumed into it. 

Katya  33:31

Yeah … Hannah, for time, I just don't want to overdo it. 

Hannah  33:37

yeah, we are at 40 minutes. So we should we should tap out now. 

Katya  33:41

Do  you want to say anything else?

Hannah  33:43

No, not really, I think other than just as I always do is just invite people to share so that Katya can then pass on the messages to me as our inbox monitor.

Katya  33:57

Yeah. Yeah, let us know. Thanks so much for listening. 

Katya 

Okay, I know we dropped off suddenly there, Hannaha and I have a time limit on these episodes to protect ourselves from overdoing it. Anyway I loved what Hannah said towards the end, about the importance of making space for other parts of yourself, to lean into those parts and to be a person and not just your illness.

That made me feel better coz it’s something I’ve been working on lately and so far, its only brought me good things. I guess the tricky thing here is the balance between remembering that I have this disability, I said it, so that I can look after myself and not letting it define who I am. And I’m working on finding that balance, from the wonderful emails and messages I receive from our listeners I know this is something you’re working on too. Anyway, that’s all for today, thanks for listening.