Episode 7

Ep 7

Intro: We talk a lot about living with inflammatory arthritis, but what’s it like to work when you’ve got IA? Inflammatory with Debbie Wilson and Katy Peiris, navigating life with inflammatory arthritis.

Debbie: Hello, and welcome to Inflammatory with Debbie and Katy. Over the last few episodes, we’ve taken real deep dives into rarely discussed topics, ones that have really pushed us out of our comfort zones.

But we want to be completely honest about how inflammatory arthritis affects our lives. The incredible feedback we’ve received shows that our stories really do resonate with you. But next week, we’re back with another Q&A session.

And of course, we can’t do the A’s without the Q’s. So please send them in via our website, inflammatoryarthritis.org. And we especially love the voice notes, so please send them in and you’ll even get featured on the podcast next week. But this week, we’re keeping things a little lighter, but diving into a really important topic, working with inflammatory arthritis.

But both Katy and I were made redundant last year, just to say it’s different roles, different jobs, even different sectors. But we know that actually this is becoming more common, but it’s a really stressful time. And we know that stress is a major trigger for inflammatory arthritis.

We’ll do a deep dive into that topic in another episode. But we just want to reflect on actually how that experience has really impacted our IA and what we’ve learned along the way. We also want to talk about employers who should now be offering flexible working from day one.

But what does actually that mean? And it might not be necessary for every job, but has it worked for us? Do we prefer working in the office or working from home? Plus, we’ll share some best tips about having those conversations with employers, how we plan our days to reduce fares, because we now know that sitting is the new smoking and it is really bad for you. And have we actually found that ever elusive work-life balance? But Katy, so lovely to see you. How’s it going in fuck it land?

Katy: Well, in fuck it land this week, we’re in the depths of half term, of course.

So yesterday, the struggle was real with my son’s tennis camp was cancelled because they didn’t have enough kids of his age. So they cancelled it. I was super lucky, though, that one of my friends, she was off work with her two kids.

So she invited him around for a play date. So that was, you know, that was avoided because it’s always stressful when if you need to work from home with your child in tow. I think it was a couple of weeks ago that I was recording the episode, and my son had been off. Yes. School sick. And he’d already interrupted a number of Zoom calls.

So it’s just that, you know, you don’t want to be battling getting multiple snacks and trying to kind of have the day to day goings on. And how is it for you? Because your two daughters are a lot older.

Debbie: Yes. Well, actually, they’re both away at the moment. So, I have a really quiet household and it’s really strange without them here. They’ve gone to Cardiff because it’s a potential university for my eldest daughter. Thankfully, she’s going to have a year out. But yeah, so it’s just really strange that they’re out having a great time. They did try, I think, go hiking yesterday, but I didn’t realize in Cardiff it was so cold, icy, and it wasn’t safe for them to try and get to the top of one of the mountains there. So thankfully, they came back. But yeah, it’s just very, very quiet. And I really miss them. Don’t tell them that, but I really do miss them. And hopefully they’ve missed me and kind of appreciate what I do for them. But yeah, they’re back today at some point, but no idea.

I don’t know if you know, Katy, it is Love Your Pet Day this week as well. And on our socials is a really cute video of my dog, Whiskey, because I’ve mentioned her quite a few times now in the podcast. So, I thought if you go head over to our socials, you will see my crazy but beautiful dog, Whiskey. Cause do you have any pets, Katy?

Katy: We have fish. Oh, okay.

Debbie: And it’s tropical fish?

Katy: No, so they’re freshwater fish. We used to have three tanks, but we’ve now just got one. So, when you’re doing your morning business, we had one in the toilet that you could watch. That was enjoyable. I used to quite enjoy that. It’s quite relaxing. But now we’ve just got one in the kitchen. So, when you’re having your breakfast, your cup of coffee in the morning. I find fish, actually, I probably don’t really look at them enough, but I find them really relaxing. But they are my husband’s thing. So, he had fish tanks growing up. We bought our first fish in just before lockdown. So, I had like two new buddies when I first started working from home in the lockdown period.

Debbie: Yeah, I just wonder how the fish would feel looking at you while you’re on the loo though. But you know. But we used to have tropical fish, and we had two sharks and a crab. The crab escaped to the bathroom, which was just bizarre. I don’t think it did actually make it to the bath, though, and have the water, it died on the way. And we had two sharks, and one of them was the daftest thing. Because we realised it just kind of kept looking at itself in the mirror. Because first of all, we called it Trigger, because I used to love Only Fools, and thought, you know, not the sharpest tool there. But then we actually, we had a friend called Nigel, and all he ever did was look in the mirror. He was one of the blokes who just looked. As soon as you walked past the mirror, he would stop and look at himself. So, we just called this shark Nigel, and it was, yeah, I don’t think he appreciated it. So, there you go. Didn’t know you had fish.

Katy: Learned something new every day.

Debbie: So, what’s your nickname?

Katy: I have multiple nicknames throughout the years. The most common one is Weave. So, my original surname, my maiden name, was Weaver. So I was often at school, I was called Little Weave, because I’m the youngest of three. Right. I’ve also, my dad used to call me Little Shit. Again, because

Debbie: that’s something you think, you never say, because that’s, to be fair, that’s my dog’s nickname.

Katy: Because I was a little bit of a pain growing up. And my brother still calls me that quite a lot. I’ve also, my husband had multiple nicknames for me when we first started dating. So I was Donkey, Camel, because I used to always have like a huge bag. Like, I love drinking water. So, I’ve always got to have enough space in a bag to have enough water.

Debbie: I wondered where that was going, but okay, it’s water.

Katy: So yeah, lots of nicknames, to be honest. What about you?

Debbie: Interesting. Yes, I just can’t get over you. I was supposed to call you Donkey. All that comes into mind is like Shrek, and you were just tagging along. I’ve never thought about that. I did once at Christmas, put on a little donkey outfit. Wow. Okay, we’ll have to do that at Christmas. We’ll record it live and we’ll just wear ridiculous onesies, I’d say.

For me, when I left uni before I started my career, I worked on a construction site as a secretary. It was a bit of a laugh, obviously.

Katy: I was just imagining you with a hard hat for a moment.

Debbie: I do love DIY, but I did actually wanted a hard hat and go around on the site. I was a secretary and they nicknamed me Lara Croft. Amazing.

Katy: I would have loved that nickname. I used to play Lara Croft when I was at university. Oh, really? Oh, I loved it. I was terrible. I never completed anything. I’d just let her go doing loopity loops in water and stuff.

Debbie: I’ve never played it. I think, to be fair, I didn’t quite realize what it was. I obviously then had to kind of Google it or something. Yes, I then found out. But I actually quite like that. I also just wore vest tops and trousers. I don’t do shorts. I may do. I may go into your fuck it land and just wear shorts and bikinis. You never know. But yes, I always used to wear vest tops with trousers and combat trousers was my thing. I love combat trousers even to this day. So that’s one of them. My friend at one point when I was in changing rooms called me Jessica Rabbit just because of the clothes.

Katy: Your nicknames are so cool.

Debbie: I think that’s it really. I don’t really have any other nicknames. Well, not that it’s been spoken to my face anyway.

There might be quite a number behind my back, but who knows.

Katy: Oh, yeah. And a friend’s husband used to call me the social grenade because drop me into a social situation and just watch the chaos begin.

Debbie: Actually, you know what? My husband should call me that because I’ve been so many times. When we’re at weddings, he’s like, I can’t believe you just said that. And I was like, well, I’ve just been honest. I was like, yeah, sometimes probably no filter. Debs would probably be the next one. But you are like a social grenade at work at all.

Katy: Depends on the situation. So, a lot of my roles have been quite social. Right. So, I worked in media for a long time. So, a lot of those roles were quite sociable. So going for lunches, going to events and things like that. But obviously, in a working environment, you sometimes slightly rein in your normal social ways potentially. And I guess this is really good. This leads us on to today’s topic, looking at working with inflammatory arthritis.

And as you mentioned in the introduction, Debbie, we both had quite difficult situations last year where we were both found ourselves in a situation where we were made redundant. And I think often it can be quite tricky to know whether to separate your inflammatory arthritis and your general day to day and things that happen. I know that in my situation, it wasn’t anything to do with my inflammatory arthritis. It was about the company that I’d chosen to work for. They shouldn’t have employed us. They employed a couple of extra salespeople.

They had really great salaries. And then they worked out there actually just wasn’t enough business to go around. So, I didn’t really have that much to do.

So, I kind of knew, I think quite early on that potentially that role wasn’t going to work out. I was in it for about seven months, which is obviously very short. But again, for me, I think your situation was a little bit different from memory. I was actually sort of pleased to be made redundant because I think it then forced me to look for something new and different. So, I’m in quite similar skills, but a slightly different role now. So, I’m working for a law firm in the business development team.

Debbie: Yeah, for me, it was very different. I was there doing maternity cover. And it was the first time I’ve ever done a maternity cover. It was just kind of, they then made the role, the permanent role redundant. And so obviously my contract was just kind of cut short, a lot shorter than it should have been. But I didn’t really see that coming at all. And for me, that was a big shock. But it was also then trying to talk to the person who I was doing the maternity cover for. And it was really, really stressful. And obviously it was doing a job that I was very, very passionate about. I think I’ve mentioned this when we talked about the mental health and how that actually impacted my mental health. But it also made my scleritis flare, the stress of that as well.

I think it’s because, you know, you learn, after having this disease for so long, you learn how to try to manage the stress. Again, we’ll talk about this in a deep dive episode because there’s so much to talk about on stress. But it’s, you can sort of see it coming and then hopefully, you know, try to manage that sort of side.

But when you don’t see it coming and it’s just a big shock and it really does hit me really quite hard and it’s just like, oh my gosh. But, you know, I then felt bad for the woman who I was, you know, taking over of Matt Cover. Worrying for the future for that company as well and what, you know, what they’re going to continue doing. Whether they’re going to make other staff redundant as well, because it’s not a nice situation to go through, unless it is what you want.

Katy: But I think whatever situation, even if it is what you want, it’s still quite a scary time to find yourself without a job or, you know, knowing what to do because a job gives you that kind of stability day to day and that routine of what you do at certain times. Yeah, and it kind of gives you a focus as well, sort of thing.

Because then that’s also when I was just like, oh gosh, what am I then going to do afterwards? And it was a really tough time. But then because my scleritis was flaring, I then had to have a bit of a break from screens because the eye strain and everything on, you know, just even looking for jobs. And I was in the charity sector, and I think obviously everyone knows that charities have gone through a really tough time.

You know, we’ve had COVID and cost of living, you know, people aren’t, you know, fundraising as much anymore. And so, it was really hard to try and get the job that I was after and there wasn’t many around. So, I did just kind of think, okay, I’m just going to take a bit of a break here, take a bit of a step back. But I didn’t want to end up being, before I had a massive career break after having my children. And I didn’t want to just go back to being the wife sort of thing. And as you said, Katy, work gives you, it gives you routine, it gives you focus, it gives you a purpose. And actually, I think obviously, you know, we both know and obviously with the charity now, we want to make a difference to people. This is what, you know, I feel like I’m here for, is to kind of really show people that you can, you know, live your life. But it’s just how you deal with all the situations that, you know, come up in life and how you can kind of be confident and resilient with them.

But actually for you at that time, it’s a really tough time to go through. But obviously you found a job, it seems to be quite quickly. How did you find the process?

Katy: I actually found it really hard because I think I’d sort of foreseen the potential of the job not being there. I’d started looking quite a bit before I actually got the news. I’d also wasn’t sure I really liked the company because it was just, think of the most, the person with the most power currently in the world, the person running this business seemed very similar to that person. So, I wasn’t convinced it was the place for me.

Debbie: I can’t imagine. You don’t seem to suit that at all. No. Knowing you that, no, that’s very, very chalk and cheese, I’d say.

Katy: It was, I was also selling a lot into the US market, which meant sort of your work-life balance wasn’t very good because you’d have to maybe make calls to California and some of those people wouldn’t be available until, I guess, kind of like 9pm our time. Yeah.

So, there was lots of work-life balance issues that I guess when I was going through the interview process, I hadn’t really understood properly. Also, I was sold the job on being into the office two to three times a week. And I think this is quite a good discussion point because everybody’s different. For me, as someone who’s quite extroverted, I do like that sort of in-person time with colleagues and sort of getting to know people that I’m working with. I think, for me, I work better that way. But also, don’t get me wrong, I do not want to be in an office environment five days a week and having that sort of two-hour commute each day.

So I like the sort of balance of a couple of days at home, a couple of days in the office, and nothing being too strict in terms of it has to be these set days kind of making it work for you because, as you know, I’ve got a son who we have in sort of breakfast and after-school club, but I don’t do that five days a week. There are two days a week that we will work out normal drop-off and pick-up between us and just kind of make that work with our diaries. So, it’s really important to me to have that kind of flexibility and make it work for me.

Also, I want to do this, so you can’t do things like this.

Debbie: No, well, that’s very true because I think, you know, because obviously looking up kind of what flexible working means, you know, employees, as I said, should offer that from day one. Now it changed last year. But flexible working can mean many things, and I think it’s trying to work out what works for you because it’s not necessarily working from home, remote working or hybrid working. It can be compressed hours. It can be flexi-time.

Just to say, I think if you’re listening in Northern Ireland, it is slightly different. The employment law is just over there. But this is generally, you know, but obviously you said that hybrid seems to work for you and you have that flexi-time as well.

I’ve had jobs where, put it this way, my previous, previous career, before I had my children, working from home was non-existent. You just didn’t. You were in the office five days a week. And when I was even heavily pregnant, I was thinking about this the other day, and it really tried to, it made me laugh because my kids wouldn’t understand that there wasn’t many laptops. And if you did have a laptop, they weren’t broadband compatible. They were dial-up. So, you’d take the laptop home and you would sit there for like half an hour, and that noise.

Katy: I remember that noise from my parents’ house. It’s so triggering.

Debbie: It just gives me anxiety. And actually, will it connect? Will it not? And then can I? But that’s mainly because my midwife, it was a very, very hot summer, and my midwife told me not to travel on the tube because it was just too hot and it wouldn’t be safe for me or my child. But I really did have to push for that. And yet, those laptops were just awful. And then I obviously had my career break, and then I did apply for a full-time job, but I wanted it to be remote. There was no way that I could get public transport there and I’d have to drive.

And I didn’t want to be driving for like two hours a day. I thought, I can’t do that. Even just being on the M25 just stresses me out. And I was like, oh, no. So, I did make sure that I had remote written in my contract as well. And I think if you do want remote working, because I know most companies now are pushing for the hybrid or kind of back to the office sort of thing.

Katy: Yeah, there’s so many things going around on socials about people trying to get people back in the office five days a week.

Debbie: Yeah, and I think if you have it in your contract that it is that, you know, your main place of work is remote working, working from home, you should be in a better place. But obviously, they can kind of give you another contract to sign. But it’s just kind of just making sure that what is in your contract when you sign is actually what you want as well. But then I did then have a job similar to yours, Katy, hybrid, been in the office for a few days a week. But then it was really interesting because there were a few days it was great.

But then you’re then on Teams calls with people even in that were in the office as well, because there’s lots of other people joining. And so then you kind of had to take yourself off to a little meeting room because you’d felt, you know, lots of feedback and everything that was going on. So, it’s just like, what’s the point really? Do you have that when you go in?

Katy: So, yeah, so where I am, we’ve got a lot of regional offices. So, it’s a bit different. So, what we did the other week, we had a big call with kind of everyone in the team was on it. But what we did, those of us in the London office went into a meeting room together and joined the Teams call together in the office. So, it kind of made it, I said, this is like old times, where I’m actually like in a room having a meeting rather than just on a screen and my head and shoulders. So, I just think it’s such a funny, been a funny period the last five years, kind of getting that balance between the old work, I classify it the old working ways and the new working ways. And I’m now working with people that have never been in the situation where they’ve been five days in the week in an office.

They’ve come into the workforce kind of, you know, the hybrid model. And I’ve always worked, I think, in relatively progressive organizations because we kind of instigated, I think it was Agile working, it was about sort of 15 years ago, it was before I was diagnosed. And I know my boss, when she came back from maternity leave, she used to have Fridays working from home. And then she’d have sort of one Friday a month where she didn’t actually work. She could, I guess, do other things. But we kind of had something called Agile working where it was just work what works best for you.

So, if you were going to a meeting that’s not close to the office, don’t bother coming into the office first, work wherever suits to begin with and then head over to that. So, I think, you know, there’s lots of different concepts. And I guess it’s always the certain jobs where you can’t work flexibly or in a different place.

So, it’s just understanding, you know, how to make that work. And I guess this leads us on to kind of looking at inflammatory arthritis and how we can talk to our employers better about it and what our needs are. Have you got any examples where you feel you’ve kind of done this in a really good way? I’ve done, I’d say I’ve been kind of good, bad and in between of how I’ve communicated.

Debbie: Okay. Well, I remember when I applied for my first career, I had an interview. It was kind of like a whole assessment week, I think. And I never, because I’d never really spoke about my arthritis, I didn’t really, I put something in like kind of like the application form, but it was very kind of around the edges. I think obviously, you know, doing this podcast, we try not to go around, we try to do, you know, the deep dives. So, he picked up on that and he asked me the question. So, you know, if you don’t mind me asking, what is this illness that you’ve got? And so, I spoke about it, and he was like, that’s fine. We can sort that out for you. What would you need? And I think that question really threw me. It’s like, well, what do you mean? You know, we can kind of get you ergonomic stuff for the desk. We can get you, you know, comfy chairs. Just let us know what you need.

Katy: Amazing.

Debbie: And obviously, you know, you can probably go on LinkedIn and this, you know, it was for the civil service. So, you know, you’d hope that they would obviously do what they say, practice what you preach. So, they were really good. And then in other organizations, even more recent ones, they’ve known that I’ve had the disease and that. But whether, I don’t think I’ve ever had kind of the conversations with them about what do I need. But you’ve started your job recently. So how did you go around having that conversation?

Katy: So on my CV, I make it really clear about the sort of charity things I’ve done. I kind of have a section in my hobbies and interests. You’re not meant to have that on your CVs anymore though. Oh, I still have it. Maybe I’m a bit of a dinosaur, am I?

Debbie: That probably proves your age.

Katy: I just think if you’re not showing who you are outside of work, isn’t that a bit boring?

Debbie: Yeah, I agree. But, you know, they don’t think about that anymore. It’s just kind of what skills you bring to the job. That’s all they, I think, want to know. But carry on, sorry. It’s all right.

Katy: So anyway, I have kind of some of my things I’ve done in terms of volunteering. And then quite often if they will bring up, so do you have this disease yourself? And then I can talk about it freely. So, I think that’s, for me, that’s been quite a good way of bringing it into the conversation. But I do think, and a lot of job applications now, there is a kind of tick box around sort of if you have any additional needs that they might need to consider. So, I mean, I don’t consider myself disabled, but what I do do is sort of add a comment about my diagnosis and about then what that could mean for an employer. Because there are going to be times where you’re fatigued, you might have brain fog, so you can’t focus.

So, I think it’s just about, it’s really hard, but it’s just about trying to be honest and open. And in the role that I’m in at the moment, we have something, we have a sort of flexi time, I can’t remember the actual title of it. But if you have to do something within working hours, you can just make up that time elsewhere. And it just makes it really easy. And so nobody really cares if you’re responding to something out of hours, because everybody can do the same. So my boss’s dog has cancer at the moment, which is really sad.

But obviously she’s got a lot of extra appointments that she’s got to go to to care for a dog. So I think all these things, it’s not just about, I think people quite often put a flexible working into the bracket of parenting, where it’s not just about parenting, it’s about health conditions, it’s about extra caring responsibilities. And it could just be that you’ve planned in a marathon, and you want to go for a run for two hours on your lunch break.

Debbie: It’s just life and actually how life can take over, but obviously work is there. And I find sometimes, I don’t get paid work, but obviously I’m running this charity, so I’m treating this as my full-time job. And I actually find that it’s actually helping my condition a little bit more because it’s given me that focus and that purpose as well, which I think for me, it’s a really big thing.

But then also I do plan my work kind of around having breaks and things like that, because meetings, like having long meetings, sometimes sitting there for hours, I get really stiff, so it’s just kind of like, no, so I do get up and kind of just do, right, what can I do in the next hour? Or 45 minutes sort of thing, if I’m flaring a little bit. So, I plan that around and I always have in my work, because otherwise, if I’m then in too much pain, I then can’t do my work properly either.

Katy: Yeah, because when you’ve got a distraction in your head, something hurting, I can’t focus, because all I can think about is the thing that’s hurting me. So, I end up going into kind of like a complete procrastination mode of just not doing anything. I don’t do anything to help the thing that’s hurting, and I also don’t do anything that might take my mind off it.

Debbie: Yeah, and I guess to pull this all together, what we want people to go away from is that actually your employers should be more flexible, have the confidence to talk to them.

I think what you said, Katy, earlier about whether it’s a disability or not, I think people do get, is it or is it not? And they’re not quite sure where to tick, but it’s just being open and transparent, making sure that employers do have their duty to make reasonable adjustments for you, whether that is ergonomic things for your desk, for chairs, but also how you want to work as well. There should be ways of working and having a really supportive manager as well really does help. I also think people think it’s their job to go and educate their manager.

It’s not. They are the ones that should go and read about the condition, but then come back and ask you, because I think Katy, you and I both know what you read can be slightly different to what goes on in people’s life and everyone’s different with inflammatory arthritis as well. So as long as you are open and honest and kind of even if it’s sending your appointment letters to them as well, having that formalized, if that’s how they want it, just do that, because then it won’t come back on you.

And I really do hope that no one has ever been discriminated against for having inflammatory arthritis, but unfortunately, you know, things can happen. But there is places to go where you can get support. There is the Citizens Advice, there’s ACAS and there’s the Equality Advisory and Support Service. These will be in our show notes for you as well. So, if you do need support, that is out there. So don’t feel like you’re on your own with that either.

But, you know, Katy, is there anything that you would want to say to anyone else?

Katy: I think it’s just to be confident in yourself and your own ability, because there’s no reason why these diseases should have an impact on your work. Appreciate, obviously, there’s good days and bad days, but it’s just being confident that you’re still a strong employee regardless of this disease and it’s up to your manager, as Debbie said, to ensure that the working environment enables you to thrive.

Debbie: Completely. I think you’ve nailed that on the head. And do you actually, lastly, have a work-life balance?

Katy: Does anybody? Good question.

Debbie: Maybe we’ll take that into the Q&A session next week. We can have a bit of a think about it. Please do send us your voice notes. Again, that’s on our website, inflammatoryarthritis.org. So, thank you so much for listening.

And actually, for those who are the age of under, I don’t know, probably about 45, this is the dial-up tone that triggers us and gives me so much anxiety. So now, be grateful for broadband and you can just click and get through.

Don’t forget to sign up to our newsletter as well on our website.

Follow us on Instagram, Facebook, Blue Sky and LinkedIn and you’ll see my dog. Until next week, it’s goodbye.

Katy: Goodbye.

In this episode, hosts Debbie and Katy, or should we say Lara Croft and Donkey (need to listen to understand why this is so) explore the realities of working life whilst living with inflammatory arthritis.  

Next week is the Q&A episode so please do send in your questions, especially voicenotes here https://inflammatoryarthritis.org/contact-us/ so you can be on the next episode of Inflammatory!

First, they have a light-hearted conversation about pets especially as it was National Love your Pet Day. Please visit Inflammatory Arthritis UK socials to see Whiskey, Debbie’s dog, debut! They also cover humorous personal anecdotes, including some unusual nicknames.

They both reflect on being made redundant from different jobs and industries last year, highlighting how stress, a known trigger for IA, impacted them and their IA. The ongoing stress of looking for work, discuss what should or shouldn’t be included in your CV and a dive into the evolving workplace landscape. How laptops have moved on, and the sound of dial up still gives Debbie anxiety to this day! Make sure you listen to the end to fully understand.

They explore what it means for employers to offer flexible working from day 1? Do they like working from home or do they prefer the office? How work provides them with routine and a purpose but discuss how they plan their day so they don’t trigger an IA flare.

They also cover how employees with IA can advocate for their needs, how communication is key, what their manager should be doing and how being confident and open about your needs really can help. However, there is support out there for people who may have been discriminated against due to their IA? Support can be found here:

Resources & Links:

Citizens Advice

ACAS

Equality Advisory and Support Service

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