“Are you getting better?”
It's a perfectly innocent question. Unless you've been living with long COVID for years, in which case it can be surprisingly difficult to answer.
In this episode of Bounded Energy, Katya and Hannah explore what progress really means when you're living with a chronic illness that doesn't follow a predictable path to recovery.
Why do we tend to measure progress entirely in terms of physical symptoms? What about the enormous effort involved in learning to pace yourself, accepting your limitations, adapting your environment and rebuilding a life you actually enjoy?
Hannah introduces the Care Aims framework from her work in speech and language therapy, which offers a rather wonderful alternative way of thinking about progress. Instead of focusing solely on improvement or recovery, it recognises the importance of adjustment, preventing deterioration and finding ways to participate in everyday life.
For Katya, who's spent years feeling that her long COVID recovery should look like a steadily rising line on a graph, it's something of a revelation.
Together, they discuss the pressure to reassure other people that you're getting better, the invisible work involved in managing chronic fatigue and post-exertional crashes, and why someone appearing more active doesn't necessarily mean their health has improved.
They also reflect on disability, acceptance, changing expectations and the possibility of making meaningful progress even when your symptoms remain stubbornly unchanged.
An honest, funny and unexpectedly uplifting conversation about long COVID recovery, pacing, chronic illness and learning to recognise just how far you've come.
A note for listeners: This episode explores personal experiences of long COVID and a framework used in healthcare to think about different goals of care. It is not medical advice, and progress will look different for everyone.
Transcript
Hannah: 00:00
How have you been? This week has been a hard week for me. I've been unusually tired. You look a bit pale today. Yeah. You look a little bit I look like I look like crap. I just I tend to only look at you while we're talking, but now I I can see myself and it's like I had a difficult week. Just every day I logged off work and like slept. Oh really? I think I took Tuesday off work.
Hannah: 00:28
Right.
Hannah: 00:28
And then yesterday we had a family friends' wedding, which was lovely. I was there from like two till eight.
Katya: 00:35
Gosh, two till eight. I know. That's a long time.
Hannah: 00:40
That's six hours. I I agree. That's like a bloody marathon. I was like super impressed. I'm I can't stop. I can't stop shaking. I'm like very shaky. Oh, yeah, I get that. Do you get that?
Katya: 00:58
Like I'm shaking. I I yeah, um, so that this was something that started to really freak me out in the very early days of having long COVID was the tremors. It's definitely a sign that you are your body is really tired, like really on the edge.
Hannah: 01:15
Oh, Hannah.
Katya: 01:17
Sorry.
Hannah: 01:18
It can't be a sign that like I'm just jazzed. Yeah, you're just so excited to be here. Um it's like a sign that really good things are around the corner. I'm like, no.
Katya: 01:33
Scale it back. I think you just clearly something has happened in the last couple weeks that's just put a bit more pressure on your body than usual. Can you think of anything?
Hannah: 01:46
I don't know. Yes, definitely. Like work and life, just life. I'm having a good day. Minute we what to do and how to be with the beans given to me, me and my bounded energy.
Katya: 02:15
Medical disclaimer, we are not doctors and we are not giving medical advice. If you are struggling with any of the issues discussed in the podcast, please seek professional help.
Hannah: 02:26
Welcome back. In today's episode, Hannah and I are discussing the dreaded word progress. It's something we've talked about a lot previously, our intense struggles with seemingly simple questions like, How are you? How is your long COVID? I heard you've been ill. I know that last one doesn't actually read like a question, but I've had it presented to me as one on numerous occasions, and it often leaves me feeling really quite stuck as to how to reply. Hannah and I discuss the concept of progress in chronic illness, and Hannah shares a seriously useful framework for measuring progress from her work in speech therapy. This moment almost brought me to tears of relief, and I can't wait for you to hear it. Hannah begins by mentioning an article I wrote for cosmopolitan.co.uk on non-COVID. So if you're interested in that, I'll link to it in the episode description. All right, that's it for now. Happy listening.
Katya: 03:19
Um, I've literally I I never check this email account unless we're doing this podcast. So I didn't see the email you sent with your um article until now. What email?
Hannah: 03:35
You sent me an email with your article on my 80s! I had no idea. The Cosmo one. I w I just wanted you to read it. But literally it's live, Hannah, so like it or not. Oh my god, I can't believe that. How come you didn't tell me over text and I didn't respond? Because you were like, you were stressed, and I didn't want to add I felt like you had a lot going on that week, and I knew it was your period, and I didn't want to give you a 2001 essay about long COVID to read. It's already on the website though, and I I have mentioned you by by first name, Hannah.
Katya: 04:17
Yeah, I'm nearly at the end. I'm like two-thirds through. And I was like, I feel so emotional reading it, honestly. I felt like I was welling up like at several points, and it's yeah, yeah, it's really, really good.
Hannah: 04:33
Just if I keep the spin in, this is about I wrote an article for Cosmo um about life with long COVID. I was really pleased, they let me donate my fee to the Long Covid Kids charity.
Katya: 04:45
Yay!
Hannah: 04:45
That's good.
Katya: 04:46
That's a great idea.
Hannah: 04:48
Yeah, I found it hard to read as well, to be honest.
Katya: 04:51
I wrote it like months ago, and it's been I haven't really reread it because it's just like, oh my god, Katia is so moving. Your description of that quiet descent into like the depths of long COVID, because that like really hit me, you know, when you when you talk about how initially you just felt like a creeping tiredness, and then slowly, slowly your life starts to change and the fatigue deepens, and before you know it, yeah, you're like a mess on the bathroom floor, like wondering how the hell did I get here? Yeah. Um, wow, that was really uh kind of that was really hard to read. I felt like I felt so sad for you, and then also sad for myself and for everyone who's going through this condition.
Hannah: 05:41
It's like the tiny adjustments that you make as you're becoming ill to hide it from yourself.
Katya: 05:46
Totally, yeah. Yeah. And there's yeah, there's you can kind of deny it to yourself for a period of time, can't you? Uh, I definitely did that.
Hannah: 05:57
Yeah. Like there's a part of me that wonders if that's why it ends up being like totally immobilizing. Yeah. Yeah. Because your body's like, hey, pay attention, and you're just like, no, I don't need to pay attention to this. I'll just stop doing Zumba. I'm having a good day. The word progress. How do you respond to that? What does it mean for you?
Katya: 06:26
I yeah, I don't respond to that word particularly well. Um, I think I I respond better to it now because I have over time reframed the meaning of that word. But I think initially I felt a lot of like an anxious pressure around the word progress because people would ask me, like, you know, are you getting better? You know, are you making progress? And it's like, no, no. Yeah.
Hannah: 06:58
In a word, I am not. Um, so but also do you do you not think that that response is because they tend to only mean one specific thing? Like when they say, Are you making progress? I know that they literally just mean physically. Yeah. Are you making progress?
Katya: 07:19
Yeah, like is your long COVID kind of clearing up?
Hannah: 07:22
Yeah, like, are you done yet?
Katya: 07:24
Can we move on?
Hannah: 07:26
Are you better yet?
Katya: 07:28
Just get better already. And the thing is, is I think people will ask about your progress in a super well-meaning way, but then in my head, I hear why you're not better yet. Clearly, you're doing something wrong if you say that you haven't made progress. I feel like that question of like, oh, are you feeling any better? I think people expect a yes because people assume that long COVID is something that will get better with time and typically resolves in like three to six months. So I think I found it really difficult um sort of going against I think what is sort of socially expected in that type of chit-chat. Um it's such a downer to be like, uh, yeah, actually, no, I'm not getting better. Like, I then had to, I don't know how you then it would just leave this awkwardness in the conversation.
Hannah: 08:22
Yeah. And I actually I feel like sometimes I get stumped at that. Like lately, I've found how are you doing difficult? How are like the question, how are you?
Hannah: 08:33
Yeah.
Hannah: 08:34
I've been like, there's a part of me that's kind of like, I I just have had a few people say, How are you? and I've just not known how to respond. Because it's just like, what do you mean? What do you want from me? I don't really think you have time for me to answer this honestly. I don't think that the truth would be satisfactory to you. Like, what do you want? And my head, there's a part of me that's just like, like, how am I? Like, like off, like, who cares?
Katya: 09:03
I don't know. Um, it reminds me of um uh Florence in the Machine song where she's got this lyric. Um, I think it's like at the end of the chorus, and it's like, tell me what you want me to say. And like I almost that lyric always comes up in my head when I'm like find myself in like a weird conversational moment where I feel stuck.
Hannah: 09:26
Like, I don't know what the other person wants from me. But that might be my autism. But uh yeah. No, it's good to hear that you you you feel that too.
Hannah: 09:36
I feel it too. Yesterday it's true, I thought about this conversation, this conversation we're gonna have yesterday because I was leaving this like family event, and a grandma grabbed my hand and said, I heard you got knocked down by COVID. Are you getting better? And it was like I was walking past her and I was on the way to the loo and I was like, didn't want to have a chat. So I was just like, I did get knocked down, but don't worry, I'm much better, and I'm getting better. And it was like in my head, it felt kind of surreal, but then it's like, I don't know, for that kind of meaningless interaction, I'm trying just to be like, Yeah, I'm getting better. Yeah, totally. Never see you again. But exactly I feel like when I think of progress, I have this horrible image of a straight, you know, like an X and Y axis where the X-axis is time and the Y-axis is progress. Sorry, X-axis is time and the Y axis is like your health. I feel like people expect progress just to be a straight line. Yeah, like a Y plus C just as time goes by, you'll just be getting better. And it's like sometimes if I honestly think about my progress over time in the two years since getting COVID, it's if you have that graph, it's like a sideways S, like recovery and then a dip, and then climbing back up again, and then yeah, definitely.
Katya: 10:56
Yeah, it looks like a roller coaster, doesn't it? Yeah, and looping around and down and all over the place. Yeah.
Hannah: 11:07
And it's like I think the thing I find hard about art people asking about progress is the expectation and that feeling that I'm just gonna disappoint someone by talking about it.
Katya: 11:21
Yeah, yeah, yeah. And yeah, you're not giving them what they want in that moment, which is uh a check-in on your well-being, uh, oh, that's good to hear, and then move on to something else. Um, yeah, I don't really think that many people want to be deep in a conversation with you about your chronic illness for a while. I don't think it's a particularly comfortable place for that many people to find themselves in conversationally. I said this over text, didn't I, last week? I was like, I think people are really uncomfortable with chronic illness.
Hannah: 11:56
But do you remember the context was I messaged Hannah complaining because I had complained. I had been complaining about how tired I was to people. And I had had the responses of like, well, you're probably a bit too hot, or of course you're tired, you're lying down, or well, you need to eat something. And my message to Hannah was just like, it could be that I'm tired, hungry, or hot, or it could be like the chronic illness I've been living with for two years, like go figure. And and Hannah's response was, yeah, people are just super uncomfortable.
Katya: 12:31
Yeah, people would much rather you just be, you're just a bit hot, let's move on and talk about something else.
Hannah: 12:36
I thought you had long COVID. Oh, actually, you're just hot. You just overheated, it happens to my toddler. Oh, yeah. I wanted to say something. Yeah, so I had two points to make here. One of them is like the thing I don't like about being asked about progress is I feel like it ignores how hard I've worked and how much I've done to come to terms with my current state.
Hannah: 13:04
Mm-hmm. Yeah.
Katya: 13:06
And how hard that we work literally just to keep, just to be stable, just to like maintain where I currently am and not go further down the hole.
Hannah: 13:19
Yeah.
Katya: 13:19
It's a lot of work. Uh well, not work, but yeah, it's a lot of mental work. Um, and a lot of making, having to make the correct judgments about your health and make the right choices to keep yourself on track. So yeah, just maintaining yourself is is hard. So to then be expected to improve can feel like too much sometimes on a bad day.
Hannah: 13:46
Another thing that I had also thought of with progress is just like it's so vague because the illness is so kind of unmeasured. My illness is so unmeasured. So other people's perceptions I don't actually think are helpful. Because it's like people can't tell whether my energy has increased or if I'm just using it for different things.
Katya: 14:08
Yeah.
Hannah: 14:08
So they don't know if I think that now I see my friends once a week. They don't know if cutting back from five days to four days of work has increased my health and now I can see my friends, or if I've just put that energy somewhere else. Does that make sense?
Katya: 14:26
Yeah, as in the the energy that you were giving to that additional fifth day of work, you're now giving to your friends.
Hannah: 14:34
Yeah. So to them, it's like, oh my god, Katja's making so much progress. It's like it's like just the same. Only exactly, only I know what I do with my downtime and yeah, yeah, totally.
Katya: 14:48
Only you know then what happens when you get home after seeing them, and like the the what you have to do to then look after yourself following that event to make sure that you can then get up and do the week again.
Hannah: 15:03
Yeah. Um Did you have anything else you wanted to? Well, I'll see on just the wire.
Katya: 15:10
I think what you were saying about adjustment um and the work that goes in just to kind of accept and adjust to the condition rather than being in a state of denial about it all the time as progress is something I completely agree with. Um, I was thinking kind of before we uh before we met to record this about the different ways that we can define progress. And it made me think of um something quite geeky, which is something called the Care Aims framework that we use in speech and language therapy. It was developed by Kate Malcolm S, but it's the Care Aims framework is um basically a list of reasons as to why, as a therapist, you would give care to a client. But I was thinking like, oh my gosh, that's just the perfect way for me to try and to visualize the different ways that I define progress. Um, because one of the care aims is adjustment, it's about accepting the condition you have and understanding it and then being ready to make a change.
Hannah: 16:16
Um say that again.
Katya: 16:18
So one of the care aims is that the person you're caring for you're supporting them to understand their condition and adjust and start to feel ready to make a change in their lives. Wow. Okay. So literally, like we're talking about like the very some people, for some people, that's where the work needs to start. And that's totally what it was like with us. Both of us were in huge denar for ages until we finally went through that process of like, I am actually ill and I actually need to change the way I live.
Hannah: 16:53
Yeah.
Katya: 16:54
So if you've actually reached that point of being like, I need to get help, like, well done, you have already made progress.
Hannah: 17:02
Well, and also that feels like an empowering, it feels like a possible aim. Because it's like if we only think of progress as physical, we have no control over that. But if you think that it's actually about adjusting and accepting you can make progress there, and that's and that can actually have like massive, um, a massive impact on your quality of life. Totally.
Katya: 17:32
Yeah, yeah. So the next one is um prevention. So sometimes you work with people so um to help them understand their own limits or any particular risks to themselves. Um, you help them to learn to self-monitor and prevent kind of basically like particular risks from happening. Um and I definitely think of like a lot of the work we do in managing our chronic illness is about monitoring our bodies and preventing crashes.
Hannah: 18:09
Yeah.
Katya: 18:10
And uh learning to do that is was huge progress for me. Like, yeah, fine, my condition still hadn't improved. But what I was doing was I was actually listening to my body and keeping myself on a more even keel and avoiding those huge dips um that I used to get. Yeah. Um so I liked that one as well.
Hannah: 18:32
I'm sitting here trembling, but I like I completely I completely agree. This is like this is this is also making me feel really good because it's making me think about like progress I've made. Yeah, prevention is huge, yeah.
Katya: 18:46
My god, that's huge. Okay. And then um then there's the my favorite one because I love this one for clients, but I feel like this is totally relevant to us as well, is participation. So even like I think I'm gonna cry. Aw. So even if you don't make any improvements in your the long COVID itself, participation is about adapting your environment, adapting your routines, um, getting educating the people around you so that they know how to support you better. And even if you don't, even if your long COVID doesn't get any better, by by kind of working on the supports around you, you can really keep participating in a lot of activities and keep, yeah, just taking part in life and maintain quality of life in that way. Um, so you know, we've talked a lot about the hard work we've had to do to educate people around us so that they understand us and they can make adaptations for us. Um again, that takes a lot of work to get to that point where you're you've built a supportive environment around yourself. And that is totally a mean a means of progress for me. And then you know there is improvement and there is resolution, but you know, improvement, resolution, they're only like two care aims out of like a whole framework.
Hannah: 20:18
But then those two improvement and resolution are also to a large extent completely out of your control to time and to medical progress. But with with that framework you shared, four out of six are things that people can actually do to make progress.
Katya: 20:43
Yeah, yeah. And I think we can talk about that when people say, Yeah, are you getting better? What progress are you making? You can be like, Oh, well, actually, um, I wouldn't say the long COVID itself is better, but I'm doing a lot of things around it that are really helping me to live a better life. And then that puts that you're reframing the term and you're still able to have that kind of positive interaction with somebody, um, and then move on and not kind of feel stuck of like, oh, I'm not getting better, and then just like the conversation falls flat.
Hannah: 21:17
That's such a that's such a like a beautiful way of phrasing it because you're right, like you know, people being uncomfortable with chronic illness can often mean that like people who have these illnesses don't feel like they can talk about them because we don't know how to talk about them in a way that doesn't bring the mood down. And actually, like yesterday I was at a wedding and I was asked, like, you know, how was your long COVID? And the tricky thing was like, I wanted to be honest with these people, but I was at a wedding and I didn't want to have an awkward conversation that would just be me complaining, and then the conversation fizzles out. Um, but I actually had I had that someone, I was speaking to someone who had. Has an experience of insomnia. And I was honest with him because I knew about his background. And I kind of explained that, like, my long COVID hasn't, you know, if I still have it, but my way of coping with it is so much better in terms of like, and I use the example of, well, I've come to the wedding and I'm not here counting my breaths or words or worrying about like stuff, you know. I've made space for this. I'm gonna, I know when I'm going home, and I it also reminds me, Hannah, of um, we both watched um what was that film we watched this week? We watched it separately. Oh, the subtle art of not giving a f. Yeah, the subtle art of not giving a f. And there is a bit in that film where he says, um, he talks about responsibility, and he says, it's not your the bad things that happen to you are not your fault, but you are responsible for them. And he he says, responsible for them in terms of like responsible for how you react, yeah, and how you handle them, basically. And he was kind of like, You're definitely failing if they could just keep happening to you again and again and again. Like that's that's you not being responsible. And I feel like, yeah, thinking of progress is like, are you now caring for yourself in a responsible way and protecting yourself by informing people about your illness, and you know what I mean? I feel like I've made progress there.
Hannah: 23:38
Yeah, definitely, yeah, yeah.
Hannah: 23:42
Um, it's yeah, it's okay. Where um I feel like um it's funny because we didn't prepare for this together, but we both came with a real desire to shift the conversation from physical progress to kind of like a maturity and a and an attitude and a reframing.
Katya: 24:15
Yeah, definitely. Um, I think it reflects as well like our attitudes to disability more generally as well.
Hannah: 24:25
Um I think about that a lot actually. I I read sometimes Melanie Reed's column in the Sunday Times. She is a journalist. I think she was a horse rider. She fell off her back and broke. She broke her back. She fell off her horse, sorry, and she is, I think, quadriplegic. Oh, really? The other day, one of her articles was about um she got into her like sturdy wheelchair and rode up this like rickety lane to where she used to ride her horse all the time and sat at the top and just enjoyed the view. And she just wrote with such composure and like gratitude for the level of freedom that she had and kind of acceptance. There was still sorrow, but there was this like maturity, and I just no one would ask her how her progress is, but you can you can sense that there must have been an enormous um progression in her kind of mental fortitude and her spirit, I think.
Katya: 25:29
Oh, totally, yeah, yeah. I think um we kind of talked about adjustment in terms of like coming to terms with your condition and readiness for change and stuff, but I think there's there's like a spiritual element to that, isn't there? And that that it's not like you adjust and then then you move on to the next step. It's like I've been just like every day, I feel like I'm continue to make progress in how I am understanding the condition and feeling different about my identity with it, uh, what it means for my life.
Hannah: 26:05
Yeah, it's like the perspective has gotten bigger. Like I can see all of the sorrows, but I'm also very aware that like long COVID has brought me into contact with pe with a world of disability. And I'm having I I was I realized this day I was talking to a friend who has autism about how like I don't have shallow conversations anymore because I the people I speak to now are just it's like I've cut out all of that, and because I have all of these new connections within the world of long COVID and disability, I am I spend more time with people who also don't have time for any of that. And it's kind of it's nice.
Katya: 26:50
Yeah. You spend more time having the conversations you want to have.
Hannah: 26:54
Yeah. Yeah. We're um we're at half an hour, Hannah. Should we stop?
Katya: 26:59
Yes, let's be responsible with our health and stop.
Hannah: 27:03
Yeah. Um, I feel like that was really good. That thing, that framework you brought was bloody amazing.
Katya: 27:09
Oh, glad I was I was thinking like, oh, will it be too much, you know, like but yeah, I kind of I actually thought it would be helpful. Yeah. Uh so glad that you liked it.
Hannah: 27:22
Thanks so much for listening. We hope you enjoyed this episode and that you join us next time.
Katya: 27:26
If you enjoyed the podcast, please leave a review and recommend us to a friend. Send your questions and comments to boundedenergy at gmail.com or find us on social media at bounded energy.
